SAJBL Vol 8, No 2 (2015)

ISSN 1999-7639

THE SOUTH AFRICAN JOURNAL OF

BIOETHICS & LAW November 2015 Vol. 8 No. 2

Financial support for SAJBL is received from the Medical Protection Society.

SAJBL is published by the Health and Medical Publishing Group.

THE SOUTH AFRICAN JOURNAL OF

BIOETHICS & LAW November 2015 Vol. 8 No. 2

CONTENTS

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EDITORIAL Physician-assisted dying and palliative care: Understanding the two A Dhai

EDITOR Ames Dhai CO-EDITOR David Mcquoid-Mason EDITORIAL BOARD Kevin Behrens Alexandra Capron Peter Cleaton-Jones Liz Gwyther Mariana Kruger Willem Landman Leslie London Nhlanhla Mkhize Charles Ngwenya J P de V van Niekerk Daniel Wikler PUBLISHED BY THE HEALTH AND MEDICAL PUBLISHING GROUP (HMPG)

FORUM 4 The 2015 Sexual Offences Amendment Act: Laudable amendments in line with the Teddy Bear clinic case

P Mahery

CEO AND PUBLISHER Hannah Kikaya Email: hannahk@hmpg.co.za

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EDITOR-IN-CHIEF Janet Seggie

Universal healthcare – through the eyes of a medical student V F Stock

RESEARCH 11 Ethical guidelines for military-based health research: An unmet need in Africa?

J Nwobegahay, J Ali, D Ter Goon, A A Hyder

EXECUTIVE EDITOR Bridget Farham

17 Moral challenges in managed care

L Hattingh

TECHNICAL EDITORS Diane de Kock Emma Buchanan Paula van der Bijl

21 The mandatory reporting of consensual, underage sex: Knowledge, practices and perspectives of social workers in KwaZulu-Natal

Z Essack, A Strode 26

Public health and social justice: Forging the links L Horn

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Public health, beneficence and cosmopolitan justice L Horn

34 Stransham-Ford v. Minister of Justice and Correctional Services and Others: Can active voluntary euthanasia and doctor-assisted suicide be legally justified and are they consistent with the biomedical ethical principles? Some suggested guidelines for doctors to consider

D J McQuoid-Mason 41 Protection of children by substitute consent: A universal principle and right

R Rheeder 44

Organ procurement in Israel: Lessons for South Africa M Slabbert, B Venter

CASE STUDY 48 Virtue ethics: Beyond moral theory

K Koch, C N Menezes

EDUCATION AND TRAINING 50 Nanotechnology in medicine and healthcare: Possibilities, progress and problems

J Gardner 54

MSc Med Bioethics and Health Law course for 2016 Steve Biko Centre for Bioethics

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CPD The SAJBL is published by the Health and Medical Publishing Group (Pty) Ltd, Co. registration 2004/0220 32/07, a subsidiary of SAMA. Suites 9 & 10, Lonsdale Building, Gardener Way, Pinelands, 7405 All letters and articles for publication must be submitted online at www.sajbl.org.za Tel. 021 532 1281 / E-mail: publishing@hmpg.co.za

MANAGING EDITOR Ingrid Nye

PRODUCTION MANAGER Emma Jane Couzens DTP & DESIGN Carl Sampson HEAD OF SALES AND MARKETING Diane Smith Email: dianes@samedical.org Tel. 021 481 2069 ONLINE SUPPORT Gertrude Fani Email: publishing@hmpg.co.za Tel. 072 463 2159 FINANCE Tshepiso Mokoena HMPG BOARD OF DIRECTORS Prof. M Lukhele Dr M R Abbas Dr M J Grootboom Mrs H Kikaya Prof. E L Mazwai Dr M Mbokota Dr G Wolvaardt ISSN 1999-7639

EDITORIAL

Physician-assisted dying and palliative care: Understanding the two

Ames Dhai Editor amaboo.dhai@wits.ac.za The recent case of Stransham-Ford v. Minister of Justice and Correctional Services and Others,[1] brought to the fore intense discussion, debate and reflection on endof-life issues. While much has been said, and rightfully so, of the patient’s right to dignity and the entwining of this right with the right to autonomy as entrenched in the Constitution of South Africa[2] with regard to physician-assisted dying, other core matters like the need for advocating for quality palliative care and the importance of taking the social context in the country into account require equal consideration too, if we are to have an evenly balanced debate.

Several terms have emerged in the discussion on euthanasia. In this article I consider the topic from the perspective of physician-assisted dying, which can be regarded as covering two different aspects: physi­ cian-assisted suicide (PAS), and euthanasia. In the former, a patient self-administers lethal drugs supplied by a doctor, and in the latter, a doctor administers lethal drugs to a patient at the patient’s request. It is important to note the difference between the two with respect to the doctor’s role. With PAS, while the doctor facilitates access to lethal medications, the patient plays an active role in terminating his or her own life. With euthanasia, it is the doctor that plays the active role in terminating the patient’s life, with the patient being the recipient of the lethal drugs. So, in PAS, the doctor’s role is facilitatory, as compared to euthanasia, where the doctor’s role is active.

Palliative care, as defined by the World Health Organization, is ‘an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’.[3] The intention of palliative care management is to neither hasten nor postpone death but to affirm life and uphold dying as a normal process. It does this by allowing for the provision of relief from pain and other distressing symptoms. It integrates the psychological and spiritual aspects of patient care and offers a support system to help patients live as actively as possible until death by using a team approach to address the needs of patients and their families, thereby supporting families to cope during the patients’ illness and in their bereavement. It provides for bereavement counselling when required. In this way, it serves to enhance the quality of life, and positively influence the course of illness. Management with palliative

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care should start off early in the course of illness, together with other therapies, such as chemotherapy or radiation therapy that are used to prolong life. Moreover, palliative care management includes those investigations needed to better understand and manage distressing clinical complications.[3] While there remains opposition to physician-assisted dying on grounds of personal morality, it is essential that the advances in all aspects of palliative care over the past few decades are taken into account during the debate. Palliative care is capable of relieving much of the suffering that once accompanied the dying process and the case for legalising physician-assisted dying should be less strong today than it was in the past. In addition, terms used by legal and other non-medical disciplines place an emphasis on ‘active’ and ‘passive’ euthanasia and scholars point out that the distinction between the two is false. Passive euthanasia is equated to withholding and withdrawing life-sustaining treatments and it is claimed that doctors are involved in acts of passive euthanasia on a regular basis with the end result being the same as active euthanasia – the death of the patient. These claims are flawed because of a lack of understanding into how healthcare practitioners manage terminally ill patients. When a decision is made to withhold or withdraw life sustaining treatments and change the trajectory of management to palliative care, this is only done when a diagnosis of medical futility is arrived at and hence death is the inevitable end result as life runs its natural course. The result of instituting palliative care is that of alleviation of pain and suffering during this period and not death. The intention is to try to make the patient as comfortable as possible in the final stages of life and that she or he lives in dignity until the very end. When death does occur, it is as part of the natural process or because of the side-effects of the treatment to alleviate pain and suffering. Certain types of medical management, e.g. some chemotherapeutic regimens also develop complications that result in death. Should oncologists whose patients demise from the side effects of chemotherapy now be told that they practise ‘passive’ euthanasia? These claims are irresponsible and serve to misguide the public, especially since the latter do not have an appreciation of what ‘hands-on’ medical management entails.

It is also essential that the process of physician-assisted dying is understood. With regard to drugs used in PAS, 9 -10 grams of a barbiturate (about 50 times the dose used clinically) is administered.

Drugs used in euthanasia are similar to those used in judicial executions in the United States. These are usually a short-acting anaesthetic agent plus pancuronium. The patient is completely paralysed by the pancuronium and then dies of asphyxia. There is no available evidence as to whether the terminally ill patient, who is administrered euthanasia, regains consciousness. However, evidence does exist that the blood levels of the anaesthetic agent in 43% of executed prisoners had fallen to a point at which they may have regained a degree of consciousness by the time of death.

Because of complete paralysis, official observers would not be able to detect this.[4]

EDITORIAL PAS and euthanasia are not without complications. There were diffi­ culties in administering the lethal drugs in 10% of PAS and 5% of euthanasias in a Dutch study. Other complications included vomiting and muscle spasms during the process in 7% of PAS and 3% of euthanasias; a long time for death (up to 7 days) in 15% of PAS and 5% of euthanasias.[5] Similar reports have been recorded in Oregon and very long intervals from ingestion to death have been documented.

Six patients who attempted PAS were reported to have re-awoken.

None re-attempted PAS.[6] Vulnerability in this context must also be considered. Not only is it linked to socioeconomic factors and other issues like elder abuse and possible coercion by family members, but also to feelings of dependency, loss of independence, inability to communicate, and psychological distress.[7,8] Clinical depression cannot be ignored, whatever the socioeconomic status of the patient. One third of patients who were being prospectively monitored as part of a PAS research project in Oregon and who died after ingesting the lethal drugs had been suffering from clinical depression. This condition had neither been diagnosed nor referred for expert psychiatric or psychological assessment and treatment. [9] Evidence from research confirms a strong correlation between depression and hopelessness among those requesting physician-assisted dying.[10] The case of Stransham-Ford v. Minister of Justice and Correctional Services and Others[1] was without doubt, a rushed decision. It did not take into consideration crucial issues like the advances in palliative care and social and cultural questions in the context of the wider public in SA. It has supported autonomy in its narrow sense and ignored the relational aspects of autonomy, which for many in the country is less individualistic and more relational to family or community values in decision-making. Respecting autonomy must respect not only the specific decision, but also the method by which the patient has chosen to make that decision. Moreover, while it is asserted that Stransham-Ford continued to suffer intractable pain despite receiving palliative care, it is alleged by reliable sources that the patient had not received palliative care prior to the application being made.[11] There have been calls for polls from doctors and others to assist with the decision-making with regard to physician-assisted dying.

Any poll should be conducted responsibly, taking into consideration

all elements at hand. It is highly questionable as to whether we in SA are currently equipped with adequate information to participate in any poll on the subject. It is also questionable as to whether we are ready for legalising physician-assisted dying. Perhaps our energies ought to be channelled towards advocating for quality palliative care as a right for everyone in this country. Quality palliative care remains pretty much a ‘therapeutic orphan’ – both in healthcare delivery and research. We should be wary of creating a situation whereby physician-assisted dying becomes the default position by state and other agents who fail to deliver on patients’ rights to access this much needed care.

References 1. Stransham-Ford v. the Minister of Justice and Correctional Services and Others.

30 April 2015, Case no. 27401/15 (NGHC) (unreported).

2. Republic of South Africa. Constitution of the Republic of South Africa. Pretoria: Government Gazette, 1996.

3. World Health Organization. WHO Definition of Palliative Care. Geneva: World Health Organization. http://www.who.int/cancer/palliative/en/ (accessed 1 November 2015).

4. Koniaris LG, Zimmers TA, Lubarsky DA, Sheldon JP. Inadequate anaesthesia in lethal injection for execution. Lancet 2005 Apr 16-22;365(9468):1412-1414.

5. Groenewoud JH, van der Heide A, Onwuteaka-Philipsen BD, et al. Clinical problems with the performance of euthanasia and physician-assisted suicide in The Netherlands. N Engl J Med 2000;342(8): 551-556. [http://dx.doi.org/10.1056/ NEJM200002243420805] 6. Jones DA. Evidence of the adverse impact in assisted suicide and euthanasia. BMJ 2015;351:H4437. http://www.bmj.com/content/351/bmj.h4437/rr-10 (accessed 1 November 2015).

7. Chochinov HM, Wilson KG, Enns M, Lander S. Depression, hopelessness, and suicidal ideation in the terminally ill. Psychosomatics 1998;39(4):366-370. [http:// dx.doi.org/10.1016/S0033-3182(98)71325-8] 8. Finlay I, George R. Legal physician-assisted suicide in Oregon and The Netherlands: Evidence concerning the impact on patients in vulnerable groups - another perspective on Oregon’s data. J Med Ethics 2011;37(3):171-174. [http:// dx.doi.org/10.1136/jme.2010.037044] 9. Ganzini L, Goy ER, Dobscha SK. Prevalence of depression and anxiety in patients requesting physicians’ aid in dying: Cross sectional survey. BMJ 2008; 337:a1682. [http://dx.doi.org/10.1136/bmj.a1682] 10. Smith KA, Harvath TA, Goy ER, Ganzini L. Predictors of pursuit of physicianassisted death. J Pain Symptom Manage 2015;49(3):555-561. [http://dx.doi. org/10.1016/j.jpainsymman.2014.06.010] 11. Presentation by Dr Liz Gwyther at Annual SAMA Conference. Palliative Care: Living in Fear, Dying in Despair: How Can We Help? 18 September 2015.

S Afr J BL 2015;8(2):2-3. DOI:10.7196/SAJBL.448

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FORUM

The 2015 Sexual Offences Amendment Act: Laudable amend­ments in line with the Teddy Bear clinic case P Mahery, LLB, LLM Oliver Schreiner School of Law, University of the Witwatersrand, Johannesburg, South Africa Corresponding author: P Mahery (prinslean.mahery@wits.ac.za)

Two years ago the Constitutional Court invalidated provisions in the Sexual Offences Act which outlawed sexual conduct between adolescents.

Parliament was ordered to fix the relevant provisions and to decriminalise consensual sexual activity between adolescents. In July 2015 the Amendment Act came into operation with the aim of revising the current Sexual Offences Act in line with the Constitutional Court judgment.

This article evaluates some of the changes contained in the Amendment Act to determine its alignment with the ruling of the Constitutional Court. It also considers how the changes will impact the reporting obligations of health providers.

S Afr J BL 2015;8(2):4-6. DOI:10.7196/SAJBL.375

In October 2013 the Constitutional Court (CC) declared provisions of the Sexual Offences Act (herein after referred to as the principle Act, also abbreviated as SOA) unconstitutional and invalid. The sections were invalidated because they allowed adolescents (i.e. 12 - 15-yearolds) to be prosecuted for engaging in consensual sexual activity with other adolescents.[1] The order of invalidity was suspended, parliament was given time to rectify the defects of the law and a moratorium was placed on reporting sexual acts between consenting adolescents. The process of drafting and enacting the Amendment Act was hastened by the strict deadline of 18 months that was initially given to parliament by the CC to finalise the amended law.[1] Just over a year after the CC judgment, the Minister of Justice and Correctional Services published an Amendment Bill for public comment.[2] Public hearings took place over a period of about five months until March 2015. Unable to comply with the initial deadline created by the CC the Speaker of Parliament applied for more time to finalise the law and in May 2015 the CC granted parliament until August 2015 to put the amended law in place.[3]The Bill was debated and approved by majority vote in Parliament by June 2015 and was subsequently signed into law on 3 July 2015. Its full title is the Criminal Law (Sexual Offences and Related Matters) Amendment Act Amendment Act [4] (herein after simply referred to as the Amendment Act).

The consequences of the original CC judgment for health providers were outlined in this publication[5] and others publications.[6] Suffice to say that the declaration of invalidity and the moratorium served as a means of giving effect to the health and other important rights of adolescents (e.g. their right to privacy and physical integrity).[7] It also operated in support of provisions of other laws, particularly the Children’s Act [8] which, for example, allows children aged 12 and older to access contraceptives. However, the suspended order and moratorium were only temporary solutions to the negative effects of the provisions in the principal Act and a more permanent solution in the form of legislation is welcomed.

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This article aims to compare and analyse the new provisions against the invalidated sections of the SOA through commentary in order to determine if the amendments are in line with the CC judgment. The Amendment Act makes four significant changes to the provisions of the SOA that are relevant to the discussion here. This article will focus only on those specific amendments.

Analysis of the amendments contained in the Amendment Act Amendment No. 1

Section 1 of the principal Act had two different definitions of a child. Firstly a child was defined as a person under the age of 18 and secondly, for the purpose of sections 15 and 16, a child was considered a person older than 12 but younger than 16 (i.e. between 12 and 15).

The Amendment Act removes the second definition and creates one overall definition of a child as a person under the age of 18.

Furthermore the legislature amended sections 15 and 16 (discussed below) by directly inserting certain age requirements regarding children engaging in sexual conduct.

Comments The SOA is not the easiest piece of legislation to read. This amendment will reduce any confusion on the concept of a child for the purpose of the SOA. By inserting the age requirements directly into the relevant sections 15 and 16 the lawmakers would make those sections easier for professionals like health providers to read, understand and apply.

Amendments 2 and 3: Relating to sections 15 and 16 of the SOA respectively The Preamble of the Amendment Act makes it clear that the Sexual Offences Act is amended ‘so as to ensure that children of certain ages are not held criminally liable for engaging in consensual sexual acts with each other…’[4] So the amendment is directed specifically at sections 15 and 16 of the SOA. In its original form section 15 outlawed sex with a child between 12 and 15 years of age, even if it was consensual. The effect of this was that even if the two children,

FORUM who are engaged in sexual activity, were both adolescents they were both guilty of contravening section 15. Similarly section 16 originally outlawed sexual violations (i.e sexual acts not involving penetration) committed between children 12 - 15 years of age, even if it was consensual.

As indicated previously, in the Amendment Act the legislature chose to remove the consenting age setting from the definition of a child and to reinsert it directly into the amended sections 15 and 16. The amendment now reads that anyone who commits sexual pene­tration or sexual violation with a child ‘who is 12 years of age or older but under the age of 16 years’ (i.e. adolescents aged 12 - 15) is guilty of an offence even if the adolescent consents to such an act.

So the broad prohibitions originally contained in sections 15 and 16 are retained in the Amendment Act. However, two exceptions are included in the Amendment Act to limit the general prohibition. In the first instance (the second exception relates to amendment No. 4 discussed below) the Amendment Act goes on to say that there would be no offence if, at the time of the sexual act, the perpetrator is also an adolescent (i.e. when both parties are adolescents).

Comments The CC finding made it clear that adolescents should not be criminalised for engaging in consensual sexual acts. The Amendment Act clearly removes that criminalisation while still maintaining the prohibition of other perpetrators to engage in sexual acts with adolescents. This amendment is therefore clearly in line with the CC judgment.

Amendment No. 4 Originally section 56(2)(b) of the SOA created an age-gap defence for a perpetrator who was 16- or 17-years-old at the time of committing a sexual violation against (with) a consenting adolescent who was more than two years younger than the perpetrator. The Amendment Act makes fundamental changes to the position of the 16- and 17-year-old in this regard. The Amendment Act states that there would be no sexual offence committed if, at the time of the sexual act in question, the perpetrator is 16 or 17 years of age and the age difference between the perpetrator and the victim is no more than two years. Furthermore, in the event of the perpetrator being 16 or 17 and there is more than a 2-year age difference the Director of Public Prosecution must authorise the institution of a prosecution.

To this end the Amendment Act subsequently removed the original age-gap defence that was set out in section 56(2) (b) of the SOA.

Comments Firstly, what is significant here is that the defence created in terms of the now removed section 56(2) (b) applied only in respect of a sexual violation and not sexual penetration. However, the amendment now covers both sexual penetrations and sexual violations. The amendment is therefore broader than the original provision. The second significant change created by the Amendment Act is that it replaces the original age-gap defence with an age-gap ‘exception’ to the offence. The difference is significant. When section 56(2)(b) was applied it meant that if a 16- or 17-year-old engaged in sexual activity with an adolescent, and the age difference between the parties was less than two years, then an offence was still committed by the older child and the prosecutor could still decide to prosecute. If the

prosecutor decided to charge and prosecute the 16- or 17-year-old then the child perpetrator would be able to raise the age gap defence to get acquitted. The defence did not serve as an automatic get-outof-jail-free card, it had to be argued in court and it was up to the court to decide whether the defence would succeed or not. However, the amendment works differently. By removing the age-gap defence it now means that if one child is 16- or 17-years-old and his consensual sexual partner is an adolescent who is not more than two years younger, then no offence has been committed at all. No prosecution will lie against the 16- or 17-year-old. Such a child cannot be charged because there is no offence.

What does it mean now that the Amendment Act has become law?

The Amendment has a knock-on effect on section 54 of the SOA, which is the compulsory reporting section, obligating professionals like health providers to report sexual offences. Firstly, it is no longer regarded as an offence for adolescents to engage in consensual sexual activity with other adolescents. This means that a mature 12-yearold who seeks contraceptives in accordance with the Children’s Act and who is knowingly engaged in consensual sexual activity with another child between 12 and 15 years of age is no longer at risk of being reported and prosecuted in terms of the SOA. Therefore health providers do not have to report such cases in terms of section 54 of the SOA. The health provider consulting with a 12-year-old patient is similarly no longer at risk of prosecution for failing to report knowledge of the sexual acts of this particular patient.

It is important to note that the effect of the amendments does not mean that the lawmakers have lowered the age of consent to sex to 12 years. The age of sexual consent is still 16. However, the amendment creates an exception to the offences so as not to catch adolescents in the net of a prohibition which is generally aimed at protecting children against adult perpetrators. This would be in accordance with the CC order.

The lawmakers have effectively changed the legal position around 16- and 17-year-olds. The SOA required that a 16- and 17-year-old who engaged in sexual activity with an adolescent be reported (whether they committed sexual penetration or a sexual violation). It was up to the prosecutor to decide whether or not to prosecute and they would have had to take into account the age-gap defence (in respect of a sexual violation only) in that decision. However, in terms of the new amendments the 16- and 17-year-old need only be reported if he or she engaged in sexual activity with an adolescent who is more than two years younger (whether it was an act of sexual penetration or a sexual violation). What this means is that, for example, a 17-yearold who has consensual sex with a 13-year-old and impregnates her commits an offence because there is more than two years age gap between these parties. The 17-year-old must be reported for committing a sexual offence if the health worker becomes aware of this. However, if a 16-year-old impregnates a 15-year-old as a result of consensual intercourse then the 16-year-old has not committed an offence at all (in terms of the exception created by the Amendment) and no report is required.

There are areas of the sexual offences law that the Amendment Act does not attempt to change. The reporting obligations are not directly addressed by the Amendment Act and will continue to operate as it is currently set out in the SOA. The differential treatment

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FORUM between 16- and 17-year-olds and adolescents was not an issue dealt with by the CC so the legislature has also left that divide between categories of children intact in the Amendment Act. The CC made it clear that the law must fulfil its primary function, which is to protect children from adult predators and that is why they suspended the order of invalidity. In response the lawmaker has kept the general prohibition against adults intact so if the health provider is aware of a child patient engaged in sexual activity with an adult (18 years or older) that adult has still committed a criminal offence that will have to be reported. Despite changing the legal position of the adolescent the Amendment Act does not seek to change the position in the principal Act that if anyone (including an adolescent) engages in sexual activity with a child below 12 years of age, it constitutes an offence which requires reporting.

Conclusion The CC judgment has been commended for protecting children’s rights.[9] The task of the lawmakers was to ensure that they drafted a law in line with the CC judgment. These new SOA amendments received much support from various civil society organisations when they were being discussed during the public hearings. [10] The drafters of this Amendment Act would therefore be commended for effectively decriminalising sexual activity between adolescents in accordance with the CC judgment. It would get additional praise for proactively improving the position of the 16- and 17-year-old who is engaged in consensual sexual conduct with an adolescent by limiting the offence and reporting obligation to when the adolescent is more than two years younger than the 16- or 17-year-old. This amendment could

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certainly be said to have gone beyond the scope of the order made by CC but should further operate to create less intrusion into the sexual autonomy of the consenting adolescent while at the same time still maintaining an avenue for prosecution – if the much older child unduly influences the much younger adolescent to engage in sexual acts.

References 1. Teddy Bear Clinic for Abused Children and Another v Minister of Justice and Constitutional Development and Another 2014(2) SA 168 (CC).

2. Republic of South Africa. Criminal Law (Sexual Offences and Related Matters) Amendment Act Amendment Bill. [B18-2014]. Pretoria: Government Printer, 2014.http:// www.parliament.gov.za/live/commonrepository/Processed/20150302/594925_1.pdf (accessed 5 August 2015).

3. Acting Speaker of the National Assembly v Teddy Bear Clinic for Abused Children and Another [2015] ZACC 16 4. Republic of South Africa. Criminal Law (Sexual Offences and Related Matters) Amendment Act Amendment Act 5. Government Gazette no. 38977 2015.

Pretoria: Government Printer, 2015.

5. Mahery P. Reporting sexual offences involving child patients: What is the current law following the Constitutional Court judgment? S Afr J BL 2014;7(1):26-29. [http://dx.doi.org/10.7196/sajbl.303] 6. McQuoid-Mason D. The Teddy Bear Clinic Constitutional Court case: Sexual conduct between adolescents consenting children aged under 16 years decriminalised and a moratorium on the reporting duties of doctors and others.

S Afr Med J 2014;104(4):275-276.

7. Republic of South Africa. Constitution of the Republic of South Africa, Sections 12 and 13 of 1996. Pretoria: Government Printer 1996.

8. Republic of South Africa. Children’s Act No. 38 of 2005. Pretoria: Government Printer 2005.

9. Buthelezi MC, Bernard RB. The court knows the law. J S Afr Law 2014;3:625-639.

10. Community Law Centre, University of the Western Cape and Centre for Justice and Crime Prevention. Submission to the Portfolio Committee on Justice and Correctional Services on the Criminal Law (Sexual Offences and Related Matters) Amendment Act Amendment Bill 3. Cape Town: University of the Western Cape.

2015. Pretoria: Government Printer 2015.

FORUM

Universal healthcare – through the eyes of a medical student V F Stock, 3rd-year medical student Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa Corresponding author: V F Stock (victoriastock@gmail.com)

Had I been tasked with writing an article on universal healthcare it is unlikely that it would have addressed any of the issues that Victoria Stock has in her article. This is not a criticism of the author but an endorsement of the idea of not only encouraging students to write on subjects of an ethical nature but also to disseminate their views further. Issues addressed by her range from poor student attendance through to taxation and thoughts on distributive justice. Clearly she has thought about the subject and is willing to reflect not only on major issues but also on her experiences close to hand.

Ethics appears to be alive and well at the University of Witswatersrand and students are engaging. An undergraduate student manages to bring the weighty subject of universal healthcare directly to the level of students and their clinical involvement. This reflects exactly what the Medical Protection’s motivation was to be involved in the exercise – to make ethics real, relevant and engaging; to encourage the future of the profession to participate.

Read the article for what it is, not what you think it may lack. This is an undergraduate medical student with virtually no formal training in logic or bioethics and she opens up an interesting vista. Read it critically and think for yourself. My angle, given my background, may have been on money and resources wasted or money wasted to litigation. What would yours have been? Graham Howarth

Regardless of which bioethical theory one consults – be it, for example, utilitarianism, which states that one must do the most good for the greatest number of people, ‘An action is morally right if the consequences of that action are on balance more positive than negative for the greatest number’;[1] or perhaps deontology, which is duty theory ‘there are certain actions which we have a duty to perform or to refrain from performing’[1] – one will likely come to the conclusion that universal healthcare is an ideal which, if at all possible, should be achieved by mankind. It is a question of human rights, and respect for one’s fellow man, or perhaps, more fundamentally treating those around us with the care we would expect for ourselves, or family members. In this article, I shall attempt to unravel universal healthcare as an ideal. To bring it down to fundamentals and perhaps make suggestions towards how such an ideal may be realised. I will look at relevant healthcare systems, which have been implemented overseas, and compare them with what government hopes to implement in South Africa (SA) – a National Health Insurance. Most importantly, I will analyse universal healthcare in the context of SA, and establish whether this ideal is attainable.

Universal healthcare is the gem of healthcare in the 21st century. It is what all healthcare professionals would love to achieve within their lifetimes, but to achieve a goal as immense as this, one needs to build from the foundations upwards. As such, I shall discuss and suggest ways in which healthcare students can contribute to this ultimate ideal.

S Afr J BL 2015:8(2):7-10. DOI:10.7196/SAJBL.438

Could the implementation of National Health Insurance (NHI), be the answer to universal healthcare in South Africa (SA)? In theory, yes – an NHI policy in SA would formalise access to healthcare for all walks of life, regardless of income, race, gender or religion – as is due to one according to the Bill of Rights, chapter 2 of the South African Constitution.

‘Health care, food, water and social security Section 27: 1. Everyone has the right to have access to: • Health care services, including reproductive health care; • Sufficient food and water; and • Social security, including, if they are unable to support themselves and their dependants, appropriate social assistance 2. The state must take reasonable legislative and other measures, within its available resources, to achieve the progressive realisation of each of these rights.

3. No one may be refused emergency medical treatment.’[2] However, a key point in the Bill of Rights is section 27, point 2: ‘The state must take reasonable legislative and other measures, within

its available resources, to achieve the progressive realisation of each of these rights’.[2] The specification of ‘within its available resources’, gives the state leeway in realising these basic human, and constitutional rights on account of insufficient resources.

For the financial year 2014/15, the South African Treasury bud­ geted ZAR145.7 billion for Health.[3] That is an increase from the 2013/14 financial year of ZAR11.4 billion.[3] This increase was aimed at making the human papilloma virus (HPV) vaccine available, to decrease the incidence of cervical cancer;[4] launching the Office of Health Standards Compliance – an independent body responsible for making sure that healthcare facilities are operating optimally;[4] further HIV/AIDS treatment[4] and lastly, on clinic refurbishment.[4] These expenditures are all in line with the achievement of universal healthcare. But it is the NHI that truly holds the key. The NHI, which the SA government plans to implement, so far aims to provide primary healthcare to anyone who is not a member or beneficiary of a private medical aid scheme.[5] This is to ensure that members of the general populace, who are not earning enough money to afford private health insurance, will have free access to community centres and clinics through the NHI. However, the National Health Act, No. 61 of 2003 has been around for over 10 years, and there are still members

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FORUM of the general population suffering without proper access to medical treatment – be it in rural areas, where people have to walk for hours to reach their nearest clinic, or people in more urban areas, who perhaps deal with poor quality of treatment, and a lack of resources because of so many people being in the catchment area of each clinic. The National Health Act, as it currently stands, makes it sound as if everyone who cannot afford proper healthcare can go to a government facility to receive treatment.

However, these facilities remain shortstaffed and under-resourced.

With the implementation of a proper NHI in this country, would the situation improve? A better NHI system would indeed ensure that members of the population have free access to healthcare. But would this improve the quality of care given at community centres and clinics? Would the implementation of a better NHI policy mean that more clinics are built in rural areas? And would availability of resources, including human resources improve?

I believe the answer is no. No Acts of Parliament will improve quality of care, until healthcare practitioners find it in themselves to help patients more compassionately, and until more money is allocated to beds, food and general upkeep of these healthcare facilities. Achieving good health is largely dependent on the availability of social determinants. This is not taken into consideration in the Green Paper on NHI. If transport options are not available for people in rural areas, how will they reach health facilities? And lastly, the implementation of an improved NHI would not necessarily mean that more doctors and nurses would work in the public sector, rather than in the private sector; and there is again, no guarantee that there would be enough resources such as bandages, bedding, suturing packs, etc. for the general treatment of patients.

The major blockade to quality universal healthcare is not the lack of a law proclaiming that all patients have the right to quality healthcare, but rather a lack of financial backing and availability of resources which the SA government continues to fail to provide to better, and to promote quality in, public healthcare.

Achieving universal access to healthcare Is universal access to healthcare achievable?

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Many countries, such as the UK, Denmark and Sweden have NHI systems, which prioritise quality universal care within the bounds of their countries. But is such an achievement attainable in a country like SA? The comparison is difficult because the UK, Denmark and Sweden are all first-world, or developed countries, while SA, while it has areas which qualify as developed, is on the whole a developing country. As such, the three developed countries have much larger access to funds and because of this they can afford to allocate larger proportions of their national budget to health. When analysing the statistics in Table 1 it is important to note that not only does SA have the smallest budget allocation for health of these four countries, but SA is also not only a larger country geographically, but the population far exceeds that of Denmark and Sweden.

One of the most obvious problems with the SA healthcare system, with reference to the above statistics, is the lack of doctors.

SA has a ratio of less than one doctor per thousand people. This is a huge obstacle, which needs to be overcome if SA is to rise in the global comparison of healthcare systems.

One way to overcome such an obstacle would be to improve the standard of working conditions for healthcare practitioners in SA, as there are many graduates who immigrate to countries such as Australia and the UK. Another idea would be to increase the salary of government-employed healthcare practitioners, to incentivise working in the public sector, rather than seeking higherpaying private sector positions.

In addition to a severe lack of healthcare professionals, it is clear that the ZAR145.7 billion that SA spends on health is insufficient to cover the requirements of a universal healthcare system. In order to gain sufficient revenue to support an NHI capable of being truly universal there are a few areas in which SA could improve. For example, either tax

would need to be increased, or budget from other sectors would have to be re-allocated to health. In the case of an increase in tax, one would have to clarify a number of points – what type of tax would this new tax be? Would it be aimed at specific income brackets? And how would one make sure that these additional funds would find their way to the health sector rather than to other sectors within the government’s budget?

One idea is to increase so called ‘sin-tax’, that is a tax on luxury items such as alcohol or cigarettes. The reason I suggest such a tax is that these luxury items, especially alcohol and cigarettes, are huge risk factors with regards to personal health. Smoking is a risk factor for most diseases, including, but not limited to cancer, stomach and duodenal ulcers, diabetes mellitus, as well as having a hugely negative impact on the rate of wound healing. Alcohol, on the other hand, is a major cause of liver cirrhosis, as well as a major cause of motor-vehicle accidents which may have otherwise been avoided.

Therefore, discouraging the use of these substances by increasing tax may cause a decrease in the hospitalisation of patients with illnesses related to these substances, and decrease the burden that weighs down upon our public health system.

SA could also increase tax revenue by increasing corporate income tax, fuel levies and customs and excise duties. The aim of this would be to institute a small increase in all three of these brackets, but not so much as to discourage international investment.

This would contribute greatly to the revenue, and these funds could then be allocated to health.

In the case of increasing the health budget through re-allocation of funds from other sectors, one would have to establish a priority scale among the sectors to which the government allocates funds. For instance, SA does not have a great need for a large

Table 1. Healthcare allocation comparison

% of GDP spent on health

Approximate amount in ZAR

Number of physicians per 1 000 population

Number of beds per 1 000 population

9.3

2.505 trillion

2.77

3

Denmark

11.2

196 billion

3.42

3.5

Sweden[10,11]

9.4

321 billion

3.8

2.8

8.5

145.7 billion

0.76

2.8

Country UK[7,9] [8,9]

South Africa

[3,12]

FORUM defence force budget, but there is a huge need for a health and education budget. In the 2014/15 financial year, SA allocated ZAR47.9 billion to the defence force,[3] this could be decreased to perhaps ZAR40 billion, and the difference could be re-allocated to health.

Another option would be to decrease subsidies in departments such as agriculture, forestry and fisheries and general economic and commercial affairs. These gained funds could subsequently be used to build more clinics and hospitals, or to create a transport service for rural patients to gain access to healthcare facilities which they would otherwise have to walk to. Another area where the government could streamline funds within the healthcare system would be to institute independent auditors of the funds, which flow through government structures – the aim of which would be to decrease and hopefully eliminate corruption and fund misappropriation and ensure that the funds, which have been allocated to healthcare, are spent appropriately.

Further, the government could opt to allow private investors to buy shares in various hospitals. This would solve the problem as it stands, of not having enough financial resources to keep hospitals running smoothly, with sufficient medical equipment and disposables available to administer quality care to patients. This would also ‘freeup’ the budget allocated to health in order to help other struggling healthcare facilities that are still 100% government owned. The downside of this arrangement would be that the government would no longer have 100% control of public hospitals, and this means there is a potential for price changes due to competition between hospitals, which are semi-privately owned. Although there would almost certainly be an improvement in quality, there would also almost definitely be an increase in prices as private investors would expect returns on their investments. These changes in pricing may prevent standardisation, but they would also likely help move this country closer to achieving universal healthcare. Ideally, a universal healthcare system would be government controlled so as to standardise issues such as quality and costing, but unfortunately, in order to achieve universal quality care, we may need to open up the opportunity of investment to private individuals.

A further implementation, which could improve general healthcare in this country, would be to make it possible for government patients to be treated at private facilities at the expense of the government.

This would decrease the necessity of building new hospitals and clinics in the short term, while still making quality healthcare available to public sector patients. This would require legislation, and also hugely increased communication and co-operation between public and private healthcare providers such as large companies including Life and Netcare, large private insurance companies, such as Discovery, and the government health portfolio.

These changes are obviously not going to happen overnight, but I believe that taking steps in the directions that I have suggested would greatly increase SA’s ability to look after their own, and to properly supply quality care to citizens, regardless of socioeconomic status.

The role of students There are many ways in which we, as students, can start making a difference here at university. Firstly, I think that societies such as the Wits Students’ Bioethics Society are essential for creating awareness and promoting free thought among students of all ages. The Wits Students’ Bioethics Symposium, which took place in March 2015, is

a classic example of students educating other students in the field of bioethics and opening the doors to free communication about the topics that are so pertinent to our field of work in the Faculty of Health Sciences. It is essential that students attend such events and make any problems, that they have been made aware of, known to other students at these events.

Secondly, I think that students ought to feel ethically bound to report any malpractice or shortcomings which they may find or experience during their time in hospitals and clinics during their clinical rotations. Students should also give their all to learn and help while on these rotations. So often, we find students leaving early, or arriving late, and then not assisting in the ward to which they were allocated. What makes students believe that they are above helping in certain wards? What makes students feel that it is acceptable to arrive late or leave early from these sessions? I feel that the onus should be placed on students to report their fellows who are slacking.

These clinical rotations are not just an incredibly important part of one’s education as a healthcare practitioner, but also an amazing opportunity for students to assist the heavily overworked nurses and doctors in each ward. With such an immense shortfall in the numbers of healthcare practitioners in this country, students should be responsible for any small duties concerning patient care and assisting the qualified doctors and nurses in their daily duties, so as to allow qualified individuals to take care of tasks which require a higher level of skills and knowledge. The fact that students neglect full participation is a gross failing on their part, as not only are they not learning the clinical and practical skills necessary for them to become competent healthcare professionals one day, but they are also shirking the duty which they have to the patients and healthcare professionals in the ward to which they have been allocated. If students were to do their duties in their wards, this would greatly alleviate the workload of other healthcare professionals, which would in turn assist in addressing the issue of understaffing that is everpresent in government facilities.

Lastly, I think that students should be encouraged to educate themselves on issues of health law and government policy, which influences the sphere of healthcare. It is vastly important in a field which not only desires, but requires redesign, that the students of today should prepare themselves for a long-term fight for improved healthcare in this country.

Conclusion We, the current students in the country are soon going to be in a position, as qualified practitioners, to become involved, through rele­vant councils, in the changing of policies of law and healthcare administration. We should take it upon ourselves to be the driving force behind initiatives such as an NHI, and work to see these structures built into our everyday lives. And although, as it stands, SA cannot afford to implement the form of NHI that we would so love to see, as individuals, we can try to make a difference at the grassroots level. Whether a student chooses to volunteer at a clinic on free days, or merely take the time to truly care for each patient we encounter, small deeds such as these will eventually cause a domino effect of improved quality of care in our country. As residents, as citizens and as future healthcare professionals, it falls to us to try and empower our people through quality care and treatment. It is hoped, that with improved economic stability and an increased national revenue, that

November 2015, Vol. 8, No. 2 SAJBL

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FORUM one day the infrastructure will be put into place to make this dream of universal care a reality.

References 1. Behrens K. Introduction to Bioethics and Ethical Theory. Wits Medical School, University of the Witwatersrand, Johannesburg. 11 February 2015.

2. Republic of South Africa. South African Constitution, Bill of Rights, Chapter 2, Section 27. Health care, food, water and social security. Government Gazette, 1996. http://www.westerncape.gov.za/legislation/bill-rights-chapter-2-constitutionrepublic-south-africa#7 (accessed 22 February 2015).

3. National Treasury, South Africa. Budget 2014 Highlights, Pretoria: National Treasury, 2014.

4. National Treasury, South Africa and South African Revenue Service. People’s guide to the Budget. Pretoria: National Treasury, 2014.

5. Republic of South Africa. National Health Amendment Act 61 of 2003. Chapter 1 point 4.3.b. Page 15. Government Notice 869. Pretoria: Government Gazette 26595, 23 July 2004.

6. House of Commons, HM Treasury, United Kingdom. Budget 2014. London: House of Commons, 19 March 2014. https://www.gov.uk/government/ uploads/system/uploads/attachment_data/file/293759/37630_Budget_2014_ Web_Accessible.pdf (accessed 22 February 2015).

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7. Central Intelligence Agency. Fact-book: United Kingdom. Washington: Central Intelligence Agency, 2014. https://www.cia.gov/library/publications/the-worldfactbook/geos/uk.html (accessed 22 February 2015).

8. Organisation for Economic Cooperation and Development (OECD). Data Denmark.

France: OECD, 2015. http://data.oecd.org/denmark.htm#profile-health (accessed 21 February 2015).

9. Central Intelligence Agency Fact-book: Denmark. Washington: Central Intelligence Agency, 2014. https://www.cia.gov/library/publications/the-worldfactbook/geos/da.html (accessed 22 February 2015).

10. Organisation for Economic Cooperation and Development. OECD indicators, health at a glance. France: OECD, 2013. http://data.oecd.org/healthres/healthspending.htm# (accessed 21 February 2015).

11. Central Intelligence Agency. Fact-book: Sweden. Washington: Central Intelligence Agency, 2014. https://www.cia.gov/library/publications/the-world-factbook/ geos/sw.html (accessed 22 February 2015).

12. Central Intelligence Agency. Fact-book: South Africa. Washington: Central Intelligence Agency, 2014. https://www.cia.gov/library/publications/the-worldfactbook/geos/sf.html (accessed 22 February 2015).

13. Republic of South Africa. Policy paper, National Health Insurance in South Africa.

Pretoria: Government Gazette, 2011. http://www.gov.za/sites/www.gov.za/files/ nationalhealthinsurance.pdf (accessed 22 February 2015).

RESEARCH

Ethical guidelines for military-based health research: An unmet need in Africa?

J Nwobegahay,1, 2 PhD; J Ali,2 JD; D Ter Goon,3 PhD; A A Hyder,4 MD, MPH, PhD Yaounde Military Hospital, Yaoundé, Cameroon; and Military Health Research Center (CRESAR), Yaoundé, Cameroon Fogarty African Bioethics Training Program, Johns Hopkins Berman Institute of Bioethics, Baltimore, USA 3 Department of Health Sciences, University of Fort Hare, Alice, South Africa 4 Johns Hopkins Bloomberg School of Public Health, Baltimore, USA 1 2

Corresponding author: D Ter Goon (daniel.goon2013@yahoo.com)

Background. Achieving the highest standards of ethics in military health research is a challenging but crucial undertaking. The military environment is complex and African military health professionals struggle to maintain a balance between ethics and military ethos. The objective of this paper is to explore research ethics guidelines by reviewing 10 examples for their application to the military context, and describe the need for guidance in military research ethics in sub-Saharan Africa.

Method. To achieve this, five prominent international research ethics guidelines and five African guidelines were selected. Thereafter, designed topics were used in analysing them for their strengths and weaknesses in providing protection for military research participants.

Results. Out of the five international guidelines reviewed, only the Council for International Organization of Medical Sciences (CIOMS) mentions the ‘armed forces’. Similarly, the only African national guideline that specifically mentions the ‘armed forces’ is the Ugandan national guideline.

Conclusions. We concluded that national and international guidelines for human subject research may be too general and not suitable for research with military populations. There is a need for additional guidance in research ethics for military health research in sub-Saharan Africa.

S Afr J BL 2015:8(2):11-16. DOI:10.7196/SAJBL.433

The military has increasingly become a site for research.

In Africa, for instance, bilateral and multilateral military alliances have opened the way for collaborative health research programmes between and within various countries. For example, the non-profit Research Triangle Institute has collaborated with the US Naval Health Research Center of the US Department of Defense HIV/AIDS Prevention Program (DHAPP) to develop and implement of an HIV behavioural health surveillance programme for the armed forces in Mozambique and Uganda.[1] In the Central African sub-region, DHAPP also provides technical and financial assistance to national militaries for the implementation of HIV prevention and surveillance activities. In the Republic of South Africa (SA), the South African Military Health Service and DHAPP are involved in a collaborative research project known as Phidisa, which also involves the US National Institute of Health.[2] Given this trend towards increased research collaboration with the military, a critical evaluation of the ethics standards for research with military populations is necessary. While many scholarly and practical efforts have yielded significant progress towards greater protection for research participants in general, relatively little attention has been paid to ethical guidelines for military researchers in developing countries.

Military health personnel and soldiers work in complex cultural environments that often contrast with civilian life.[1] While international codes of ethics generally prescribe complete loyalty to patients, military health professionals have the duty to both support military objectives and promote the health of individuals.[3] The problem of dual loyalty is also common in settings such as occupational health

and forensic services, and these tensions could result in ethical and human rights consequences for both soldiers and civilians.[4] The issue of dual loyalty could be a particular problem in military medical service, especially when there has been no formal ethical theory specific to military physicians.[4] Additionally, some research populations are particularly vulnerable and need special protection. These include those who cannot give or refuse consent for themselves and those who may be vulnerable to coercion or undue influence. Soldiers live in camps and barracks, and they are easily accessible as a result of proper internal organisation.

Decisions and orders from superior members of the armed forces could be easily applied to the entire troop because of the strong notion of respect for hierarchy and orders.

As the military are, by nature, institutions of global power and influence, research with military populations should be subject to the rules, principles, and guidelines that broadly inform international research ethics. However, it is important to acknowledge that standard protections may be insufficient for military populations where, for instance, a culture of absolute obedience to authorities may potentially conflict with the right to patient and participant autonomy in health and research decisions.[5] This paper explores the extent to which current international and African research ethics guidelines address military health research and describes the need for research ethics guidelines for the military in sub-Saharan Africa. It reviews 10 prominent examples of existing international and African ethics guidelines to assess content that addresses research with military populations. The paper concludes by

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RESEARCH exploring the need for alternative (local and population-specific) guidelines that protect the populations involved in African military human subject research.

Methods

Ethical considerations Ethical clearance for this study was obtained from the National Ethics Committee of Cameroon and the Institutional Review Board (IRB) of the Johns Hopkins Bloomberg School of Public Health (JHSPH).

Review of selected research ethics guidelines A convenience sample of five prominent in­ ter­ national guidelines and five African guide­ lines were reviewed for particular application to human subject research within the military. International guidelines were reviewed to determine their relevance to human subject health research within the military, with particular attention to whether the international guidelines make mention of, or address, the military directly. The strength or weakness of the guidelines was further determined.

African national guidelines were reviewed to determine: • The usefulness of national guidelines for research within the ranks • Soldiers’ participation in research vis-à-vis promotion and career opportunities • Payment of military personnel for participating in research, and • The relationship between senior military physicians and subordinate soldiers, during and after research.

The guidelines were reviewed and relevant information was extracted and compiled into tables. The guidelines were screened for any language that directly or indirectly concerned populations in the armed forces and sections or references to health research on or by the military. These sections were then analysed for their strengths and weaknesses in providing protection to military populations involved in health research.

The article then uses these examples to conceptually demonstrate the need for further guidance in this area.

Results

International guidelines and military research The Nuremberg Code was written in 1947 by the Nuremberg Military Tribunals in response to the atrocities committed by Nazi doctors and medical scientists,[6] and became the prototype of many later codes of ethics intended to ensure that research involving human subjects is carried out in an ethical manner.[7] Despite originating as a response to war crimes and crimes against humanity conducted by military physicians, there are no specific sections of the 10-point document that address the military (Table 2). However, it clearly brought forth the requirement for voluntary informed consent of the research subjects and points out the fact that riskbenefit analysis is important in human subject health research while unnecessary pain and suffering should be avoided.

The Declaration of Helsinki was adopted by the 18th World Medical Association (WMA) in 1964 and was recently amended for the ninth

The criteria used in the selection of guide­ lines are presented in Table 1. The follow­ ing international research ethics guidelines were reviewed: the Nuremberg Code, the Declaration of Helsinki, the Belmont Report, the guidelines for ethics committees that review biomedical research, and the Council for International Organisation of Medical Sciences (CIOMS) guidelines.

Similarly, five national guidelines on health research ethics were obtained from African countries: guidelines on ethics for health research in Tanzania, the national code for health research ethics for Nigeria, Ugandan national guidelines for research involving humans as research participants, guidelines on ethics for medical research in SA and the guidelines for health research in Zimbabwe.

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time by the 64th WMA General Assembly, Fortaleza, Brazil in 2013.[8] This is the first postWorld War II health research guideline that includes a section concerning ‘vulnerable po­­ pu­­lations’, though no reference is specifi­cally made to the military (Table 2). In paragraph 9 of the introduction, the declaration states that, ‘some research populations are particularly vulnerable and need special protection’. It further states that: ‘These include those who cannot give or refuse consent for themselves and those who may be vulnerable to coercion or undue influence’. However, paragraph 9 does not define ‘vulnerable populations’, and fails to clearly define the kind of special protection needed to protect vulnerable populations.

The Declaration of Helsinki does not directly address soldiers, but it could still be a useful document to guide military physicians during research in military populations. However, some military physicians could find it difficult to apply paragraph 6 which states that: ‘In medical research involving human subjects, the well-being of the individual research subject must take precedence over all other interests’.

Paragraph 6 potentially conflicts with basic military culture which considers the interests of the military as supreme. During basic military training, soldiers (including military physicians) are taught that the interests of the military as an institution is always [and must be considered at all times] more important than the interests of the individual soldier.

Paragraph 6 could, therefore, be a weakness in using the declaration of Helsinki in military health research.

The Belmont Report, written in 1979, addressed some of the limitations of previous

Table 1. Criteria used in the selection of guidelines A. African guidelines Inclusion criteria

Exclusion criteria

1. Must be from a country in sub-Saharan Africa 2. Must have a national character 3. Guideline for human subject health research 4. Guideline readily available on the internet 5. Guideline published between 2000 and 2009

1. Not from sub-Saharan Africa 2. Not used throughout the country 3. Guideline not for human subject health research 4. Not available on the internet 5. Guideline published before 2000

B. International guidelines Inclusion criteria

Exclusion criteria

1. Guideline for human subject health research 2. Has global use 3. Guideline readily available on the internet 4. M ust be referenced in at least one of the African national guidelines already selected for this study

1. Not for use with human subject health research 2. Restricted use 3. Not available on the internet 4. Not referenced in any of the African guidelines

RESEARCH guidelines.[9] The report was written by the US National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. It was meant to provide broad ethical principles as an analytical framework to guide the resolution of ethical problems arising from research involving human subjects.[7] The Belmont Report does not directly address the military in any of its sections. However, it too references ‘vulnerable populations’ in its discussion of informed consent, risk-benefit assessment, and the selection of subjects for research (Table 2). The section on voluntariness in informed consent states that: ‘an agreement to participate in research constitutes a valid consent only if voluntarily given’.[9] This section of the report further states that ‘unjustifiable pressures usually occur when persons in position of authority or commanding influence – especially where possible sanctions are involved – urge a course of action for a subject’.[9] This language may have implications for military health research; however, the use of the word ‘unjustifiable’ significantly lowers the level of pro­ tection. The report falls short of making clear what sort of pressure might be justifiable, and it is possible that pressure might be considered ‘justifiable’ in some military contexts, such as in times of combat.

Furthermore, the section concerning the selection of subjects could be applied to military researchers. It states that certain groups, such as racial minorities, the economically disadvantaged, the very sick, and the institutionalised may continually be sought as research subjects, owing to their ready availability in settings where research is conducted.

Given their dependent status and their frequently compromised capacity for free consent, they should be protected against the danger of being involved in research solely for administrative convenience, or because they are easy to manipulate. Such extra protections may also be warranted in the military where soldiers are relatively restrained in their movement and limited in their capacity to make particular decisions. Nevertheless, guidance does not indicate whether, and under what conditions, the operational interests of the military can override those of the individual, in research.

The World Health Organization (WHO) operational guidelines for ethics committees that review biomedical research, published in 2000, were developed to support ethics committees globally.[10] The WHO guidelines have an African origin as the first draft of these guidelines were discussed at a workshop for members of African Ethical Review Committees organised by the WHO special programme for training in Tropical Diseases and Research (WHO TDR) and the African Malaria Vaccine Testing Network (AMVTN) in Arusha, Tanzania, on 5 November 1999. The draft was subsequently presented to an interim meeting of the Forum for Ethical Review Committees in the Asian and Western Pacific Regions in Bethesda, Maryland, USA, on 9 November 1999.

The guidelines take into consideration that a large proportion of biomedical research is now collaborative, often involving investigators or donors from high-income nations working in lowincome contexts. These guidelines do not address the military directly,

Table 2. Review of selected international research ethics guidelines for relevance to military health research Title of guideline

Year of publication

Source

Specific sections/chapters concerning the military

Discussion of particular military research issues*

1.

The Nuremberg Code

1947

The Department of Health, Education, and Welfare, Office of the Secretary, Protection of Human Subjects of the US Government. http://ohsr.od.nih.gov/guidelines/ nuremberg.html

None; however, it was written in response to the atrocities Nazi doctors and medical scientists had committed on prisoners in concentration camps

None

2.

The Declaration of Helsinki

2000

WMA http://www.wma.net/e/ policy/b3.htm

This guideline does not address the military

None

3.

The Belmont Report

1979

The Department of Health, Education, and Welfare, Office of the Secretary, Protection of Human Subjects of the US Government. http://ohsr.od.nih.gov/guidelines/ belmont.html

This guideline partly addresses the military in part C, where it makes reference to vulnerable populations in all three of its requirements

None

4.

Guidelines for Ethics Committees that Review Biomedical Research

2000

WHO http://www.searo.who.int/LinkFiles/ RPC_Operational_Guidlines_Ethics. pdf

None, however, it can guide militaries in establishing research ethics committees

None

5.

The Council for International Organization of Medical Sciences

2002

The Council for International Organizations of Medical Sciences. http://www.cioms.ch/frame_ guidelines_nov_2002.htm

This guideline directly addresses the military This is the only international guideline examined in this review which specifically makes mention of the armed forces in guideline 13

Yes

No.

* Discussion of particular military research issues (e.g. payment of active duty personnel, refusal to participate/career opportunities, possible research advantages accruing to the soldier, the relationship between juniors (study subjects) and superiors in the chain of command (study physicians)).

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RESEARCH nor do they discuss setting up research ethics committees in military establishments. However, the statement that: ’the Guidelines should be used by national and local bodies in developing, evaluating, and progressively refining standard operating procedures for the ethical review of biomedical research’ could be applicable to militaries that wish to establish their own guidelines and review boards (Table 2).

The CIOMS published its revised International Ethical Guidelines for Biomedical Research Involving Human Subjects in 2002.[11] The revised CIOMS guidelines have a section concerning members of the Armed Forces (Table 2). Guideline 13 concerns research involving vulnerable persons and specifies that: ‘[s]pecial justification is required for inviting vulnerable individuals to serve as research subjects and, if they are selected; the means of protecting their rights and welfare must be strictly applied’. It further states that: ‘[t]he quality of the consent of

prospective subjects who are junior or subordinate members of a hierarchical group requires careful consideration, as their agreement to volunteer may be unduly influenced, whether justified or not, by the expectation of preferential treatment if they agree, or by fear of disapproval or retaliation if they refuse. Examples of such groups are medical and nursing students, subordinate hospital and laboratory personnel, employees of pharmaceutical companies and members of the armed forces and police.’[11] CIOMS is the only international guideline examined in this review that specifically mentions the armed forces.

African national ethics guidelines and military research The national ethics guidelines of Uganda, Nigeria, SA, Tanzania, and Zimbabwe were selected for review (Table 3). Uganda’s revised

Table 3. Review of selected national research ethics guidelines in Africa for relevance to military health research

Year of Publication

Source

Specific sections/ chapters concerning the military

Discussion of particular military research issues*

Presence of any other rules which are specific for the military†

No.

Title

1.

National Guidelines for Research Involving Humans as Research Participants

2007

Ugandan National Council for Science and Technology http://www.uncst. go.ug

Section 9 of the guidelines concerns vulnerable groups and their protection

Yes, subsection 9.8 of the guidelines makes mention that there must be adequate assurance that a soldier’s agreement or refusal to participate in a research project is not considered in promotion, salary, or career decisions

None

2.

The National Code for Health Research Ethics for Nigeria

2006

National Health Research Ethics Committee of Nigeria http:// www.nhrec.net

There are no sections that refer specifically to the military

No specific issues

None

3.

Guidelines on Ethics for Medical Research in SA

2000

The Medical Research Council of South Africa http:// www.sahealthinfo. org/ethics/ethics. htm

There are no sections that refer specifically to the military

No specific issues

None

4.

Guidelines on Ethics for Health Research in Tanzania

2001

Tanzania National Health research Forum https:// webapps.sph. harvard.edu/live/ gremap/files/ tz_health_research_ ethics.pdf

There are no sections that refer specifically to the military

No specific issues

None

5.

Guidelines for Health Research in Zimbabwe

2004

The Medical Research Council of Zimbabwe http://www.mrcz. org.zw-docs

There are no sections that refer specifically to the military

No specific issues

Yes, Zimbabwe Defence Forces Health Services Research Guidelines

* Discussion of particular military research issues (e.g. payment of active duty personnel, refusal to participate/career opportunities, possible research advantages accruing to the soldier, the relationship between juniors (study subjects) and superiors in the chain of command (study physicians)). † Presence of any other rules which are different and specific for the military such as military-specific guidelines or codes for conduct for health research within the military.

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RESEARCH National Guidelines for Research Involving Humans as Research Participants was prepared by the Ugandan National Council for Science and Technology in March 2007.[12] Section 9 of the guideline concerns the protection of vulnerable groups. The guideline mentions that: ‘classes of individuals conventionally considered to be vulnerable are those with limited capacity or freedom to consent or decline consent.’[12] According to these guidelines, such individuals include ‘children, mature and emancipated minors, street children, prisoners, the homeless, substance abusers, handicapped (mentally and physically), armed forces, and pregnant women.’[12] Subsection 9.8 of the guideline is devoted entirely to the armed forces and states that: ‘soldiers involved in research may be under constraints because of the conditions of their military service and these constraints could affect their ability to make a voluntary decision regarding their participation in research.’[12] The guideline sets some requirements for research involving soldiers on command, such as the condition that a soldier’s agreement or refusal to participate in a research project will not be considered in promotion, salary, or career decisions. For example, a field commander cannot refuse to promote a soldier simply because he refused to participate in an HIV sentinel survey study. The Ugandan guidelines directly promote the ethical conduct of health research involving soldiers in Uganda. It addresses all the four topics that we set forth for use in the review of all the African national guidelines selected and speaks specifically to the review of projects, benefits in research, informed consent of soldiers, promotion, pay and career opportunities.

In Nigeria, the National Code for Health Research Ethics was created in 2006 by the National Health Research Ethics Committee of Nigeria.[13] This document requires that institutions must have a registered health research ethics committee to conduct health research. However, the code does not define ‘institution’, and it is therefore unclear whether the Nigerian military would require its own research ethics committee. There are no sections of the Nigerian code that refer specifically to the military (Table 3). The code does not address any of the four topics used in this review.

The Guidelines on Ethics for Medical Research was created by the Medical Research Council (MRC) of SA in 1977 and amended as the fourth edition in 2000. [14] There are no sections that specifically discuss the military, but section seven covers ‘vulnerable commu­ nities’ (Table 3). The MRC also recognises that SA is home to a number of vulnerable communities and demands that particular caution be exercised before involving these communities in research.

The vulnerability section does not mention military or hierarchical institutions and does not address any of the topics used in this review.

The Guidelines on Ethics for Health Research in Tanzania was prepared by the National Health Research Ethics Committee of Tanzania in 2001.[15] The guidelines also do not address the topics set aside for this review and do not specifically reference the military (Table 3). Furthermore, section 3.6, which describes ‘consent from vulnerable groups in the society’, does not mention soldiers as a vulnerable group.[15] The guideline entitled ‘Conducting Health Research in Zimbabwe: What Researchers Need to Know’ was prepared by the Medical Re­search Council of Zimbabwe (MRCZ) in 2004.[16] Again, it does not address any of the topics and there are no specific sections regarding the military (Table 3). However, there are military-specific guidelines for the Zimbabwe Defence Forces Health Services Research.

Discussion The military is an arena where systemic and institutional norms may conflict with widely assumed principles of research ethics. When an individual joins the military, he or she incurs unique obligations to the country and fellow colleagues. He or she ‘agrees’ to subordinate their autonomy for the sake of accomplishing the military mission.

Soldiers therefore often have diminished autonomy because, by the nature of their profession, some of their civil and political rights are curtailed or significantly restricted for the sake of producing a reliable and effective national defence force. Additionally, militaries sometimes limit soldiers’ autonomy to ensure that their behaviour does not harm others or the organisation itself.[5] The hierarchical structure of the military, combined with a prevailing philosophy of sacrifice and obedience, tends to orient military personnel away from individual autonomy and toward the common good. By contrast, in civil society, potential research participants are typically less restricted in their ability to balance individual preferences against the common good. The concern from an ethics point of view is that military researchers are not provided with adequate tools, training, and the authority to ensure voluntary informed participation in research. They are typically not adequately equipped to de-link potential military research participants from an environment that feverishly controls decision-making processes. Without adequate guidance, military health professionals will struggle to manage the tension between definite obligations to respect autonomy, and larger duties to satisfy the legitimate goals of the military.[5] In settings where collaborative military research agreements are standard practice, it is critically important to examine the availability of ethics guidance for military health researchers. Several international research ethics guidelines have been developed since the ‘Doctors’ Trial’ at Nuremberg.[17] Some militaries in developed countries, such as the US, have established their own ethics guidelines to regulate the conduct of human subject research within the military.[18] In the absence of military-specific research ethics guidelines, militaries may use either national guidelines, when available, or rely on international guidelines with the assumption that external collaborators will extend their own protective practices to the local military populations in any collaborative research.

This review of selected guidelines indicates that there is a need for more definite research ethics guidelines for militaries, particularly in sub-Saharan Africa, as many prevailing international and African guidelines have not adequately addressed this population. Only one of the five international guidelines reviewed here, namely CIOMS, specifically mentions the armed forces. However, despite its reference to military personnel, the CIOMS guidelines do not explain in detail how military health researchers can effectively manage important issues such as informed consent in the military context, payment of active duty military personnel for participation in research, and the relationship between commanders and subordinates during research.

Similarly, of five national African guidelines reviewed, the Ugandan national guideline was the only one that specifically addressed the armed forces, providing direct protections for military health research participants. It highlights the fact that potentially the fear of retaliation from senior members of the military could unduly in­flu­ ence the willingness of some personnel to volunteer or participate in research. However, again, other issues such as the payment of

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RESEARCH active duty military personnel during research are not addressed more generally and still need to be examined in most of the already existing guidelines.

Conclusions International research ethics guidelines have progressed over time to better accommodate health research among civilian populations, yet clear and specific guidance for the military is still largely lacking across most of Africa. Military personnel are called upon to serve with honour, to the point of possibly sacrificing their lives for their country. Where such willingness to sacrifice is everpresent, greater clarification is essential to distinguish a soldier’s duties and obligations from their rights when presented with health and research decisions. While gathering information on military research practices may be a difficult task, future research could focus on interviewing military health researchers and participants to add an empirical basis to the discourse. Furthermore, since most African militaries are likely to draw inspiration from international guidelines, it would be appropriate for soldiers to be included in working groups or panels during future revisions of international guidelines. The participation of military representatives at inter­ national ethics workshops and conferences would also be advantageous. Finally, national and international communities should discuss whether general research ethics guide­lines are well-suited to guide research with military populations. Militaryspecific human subjects’ research guidelines may be better able to reflect the complex nature of the military environment while simultaneously complying with international norms of research ethics.

Competing interests. The authors declare that they have no competing interests.

Authors’ contributions. J Nwobegahay designed the research proposal, selected and reviewed the guidelines, and generated the manuscript.

J Ali analysed and revised the manuscript. D Ter Goon analysed and revised the manuscript. A A Hyder participated in the conception, review of the guidelines and revision of the manuscript.

Acknowledgements. This work was supported by the Fogarty International Center and National Institute of Allergy and Infectious Diseases of the National Institutes of Health under Award Number R25 TW 001604. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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References 1. Schwerin M. Health Surveillance Research in Foreign Military Populations. Atlanta: RTI International, 2007: 1-2. http://rti.org/brochures/dhapp_hivsurveillance.pdf (accesssed 21 May 2015) 2. Republic of South Africa. South African Military Health Service: Project PHIDISA. SAMHS info. Bulletin 2007; No. 05/07.

3. Sidel VW, Levy BS. Military Medical Ethics. Physician-Soldier: A moral dilemma?

Vol. 2; Chapter 11. Washington DC: Walter Reed Army Medical Center and Bordon Institute 2003:293-312.

4. London L, Rubenstein LS, Baldwin-Ragaven L, van Es A. Dual loyalty in Military Medicine. Dual loyalty among military health professionals: Human rights and ethics in times of armed conflict. Cambridge: Q Health C Ethics 2006;15(4):381–391 5. Visser LS. Military Medical Ethics. The soldier and autonomy. In. Beam TE, Spracino IR, eds. Vol. 1, Chapter 9. Falls Church, VA; Office of the Surgeon General 2003:251-266.

6. Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10: Vol. 2, Washington, D.C. US Government Printing Office, US Department of Health and Human Services, 1949:181-182.

7. Emanuel EJ, Crouch RA, Arras JD, Moreno JD, Grady C. Ethical and Regulatory Aspects of Clinical Research. Baltimore, MD: The Johns Hopkins University Press; 2003.

8. World Medical Association. Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. Amended by the 64th WMA General Assembly, Fortaleza, Brazil, 2013.

9. Department of Health, Education, and Welfare, Office of the Secretary, Protection of Human Subjects. Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Report of the National Committee for the Protection of Human Subjects of Biomedical and Behavioral Research. DHEW Publication No. (OS) 78-0013 and No. (OS) 78-0014.

Washington DC: Department of Health, Education and Welfare, 1979:1-9.

10. World Health Organization: Operational Guidelines for Ethics Committees that review Biomedical Research. Geneva: World Health Organization, 2000. http://irb.sinica.edu. tw/doc/regulation/Operational%20Guidelines%20for%20Ethics%20Committees%20 That%20Review%20Biomedical%20Research.pdf (accessed 20 September 2015).

11. Council for International Organizations of Medical Sciences (CIOMS) in Collaboration with the World Health Organization (WHO). International Ethical Guidelines for Biomedical Research involving Human subjects. Geneva: CIOMS, WHO, 2002: 1-64. http://www.recerca.uab.es/ceeah/docs/CIOMS.pdf (accessed 21 May 2015).

12. Ugandan National Council for Science and Technology. National Guidelines for Research involving Humans as Research Participants. Uganda: Ugandan National Council for Science and Technology, 2007:1-61.

13. National Health Research Ethics Committee of Nigeria. The National Code for Health Research Ethics for Nigeria. Nigeria: National Health Research Ethics Committee, 2006:1-45.

14. The Medical Research Council of South Africa. Ethics for Medical Research in South Africa. General Principles. 4th ed. Parow: MRC, 2000:1-97.

15. Tanzania National Health Research Forum. Guidelines on Ethics for Health Research in Tanzania. Dar es Salaam: Tanzania National Health Research Forum, 2001:1-61.

16. The Medical Research Council of Zimbabwe. Guidelines for Health Research in Zimbabwe. Harare: Medical Research Council of Zimbabwe, 2004:1-22.

17. Faden R, Lederer SE, Moreno JD. US medical researchers, the Nuremberg Doctors trial, and the Nuremberg Code. A review of findings of the Advisory Committee on Human Radiation Experiments. JAMA 1996;276(20):1667-1671. [http:// dx.doi:10.1001/jama.1996.03540200053031] 18. US Army Medical Research. Guidelines for Investigators: Requirements for U.S. Army Medical Research and Materiel Command (USAMRMC) Headquarters Review and Approval of Research Involving Human Volunteers, Human Anatomical Substances, and/or Human Data; Maryland: US Army Medical Research and Materiel Command, 2007:10 -100.

RESEARCH

Moral challenges in managed care L Hattingh, MB ChB, MPhil (Applied Ethics) Leandri Hattingh writes in her personal capacity. Previously affiliated to Stellenbosch University, she now works for Medscheme.

Corresponding author: L Hattingh (leandrihatt@gmail.com)

Managed healthcare in South Africa is faced with complex moral challenges, where different stakeholders appeal to different ethics principles to guide decision-making. The traditional bio-medical ethics principles of beneficence, non-maleficence and respect for autonomy are typically emphasised in clinical practice, while third-party funders appeal to the principle of justice to guide the allocation of limited, pooled resources. Healthcare professionals working in managed care are particularly exposed to these conflicts, vis-à-vis incongruence between the ethics guidelines from their professional bodies and the legislation pertaining to managed care. Common understanding of the claims and responsibilities of each of the stakeholders may promote a more coherent, sustainable healthcare system.

S Afr J BL 2015;8(2):17-20. DOI:10.7196/SAJBL.431

While worldwide debate rages about the ideal healthcare system, managed care is an integral part of the current South African (SA) private healthcare sector, and may become relevant in a future national health insurance structure. Managed healthcare is defined in Regulation 15 of the Medical Schemes Act[1] as: ‘clinical and financial risk assessment and management of health care, with a view to facilitating appropriateness and cost-effectiveness of relevant health services within the constraints of what is affordable, through the use of rules-based and clinical management-based programmes.’

In terms of the Act, managed care organisations may be contracted by medical aid schemes to provide the above services. As third-party funders, the influence of medical schemes has historically centred on funding of healthcare services. As managed care programmes move closer towards prescriptive practices to healthcare practitioners, the boundaries of liability between patient, clinician and managed care organisation are in a constant state of flux. An understanding of the ethical responsibilities of each is necessary for protection of all stakeholders in the private healthcare system. These include clinicians, managed care organisations, medical schemes, and patients who also function as beneficiaries of such schemes. This article will focus on the four traditional bio-medical ethics principles as applied to the managed care paradigm, specifically in the context of healthcare professionals employed in managed care, and will explore some of the conflicts as various stakeholders appeal to different principles in guiding their ethical behaviour. Ultimately, the patient remains at the centre of this complex interaction. It falls upon all stakeholders to strive towards a sustainable system which provides reasonable access to healthcare of acceptable quality.

The four biomedical ethics principles The principle-based approach to biomedical ethics as suggested prominently by Beauchamp and Childress[2] proposes four main biomedical ethics principles: respect for autonomy, beneficence,

non-maleficence and justice. No one principle has prima facie value over another – to decide between conflicting principles requires a process of moral deliberation in a specific practical context.[3] While Petrini and Gainotti[4] suggest that the principle-based approach to biomedical ethics is inadequate to address the questions faced in the public health management and policy environment, it remains the dominant approach to biomedical ethics in SA. In the managed care context, various stakeholders implicitly appeal to different principles to guide their decision-making. The principles of autonomy, beneficence and non-maleficence are comfortably invoked by medical practitioners in pursuing the best, immediate interests of their individual patients. Managed care organisations and medical schemes, however, are primarily concerned with the principle of justice, as their duties are towards large collections of individuals in the form of medical scheme memberships. They are also concerned about distributive justice across time, as they seek to sustain healthcare funding into the future. These concerns are central to the domains of public health management and policy.

Who gets what? – utilitarianism and its problems The sky-rocketing costs of modern healthcare associated with its myriad of technological advances render even standard healthcare unaffordable to most people in their individual capacities. Hence the need for pooled resources such as medical schemes or government funding mechanisms for the majority of healthcare needs. Access to modern healthcare generates not only claims on the individual patient’s bank balance, but also on that of society and collectives like medical schemes.[3] In the face of limited resources and increasing healthcare costs, some form of rationing is imperative, and the concept of utility is often appealed to in guiding this rationing towards the greater good for the greater society.

Utilitarianism, as a consequentialist moral theory, holds that moral decision-making should be based on evaluation of the foreseeable consequences of an action, not on the action itself, and that the action which produces the most good consequences

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RESEARCH (roughly translating to promoting the greater good for the greater society), is the right one. Prima facie, this appears to be a reasonable starting point to guide the allocation of shared, limited healthcare resources. One of the main criticisms against utilitarianism, however, is that it clashes with the concepts of rights and fairness. Rachels and Rachels[5] write: ‘Utilitarianism is at odds with the idea that people have rights that may not be trampled on merely because one anticipates good results’. Consider the following hypothetical situation to illustrate this point: say there are three people; the only distinguishing factor between them is that two of them need kidney transplants and one has two healthy kidneys (for purposes of this illustration, let us assume that they do not have access to renal dialysis). The utilitarian might argue that the life of the latter must be sacrificed for donation of both her kidneys in order to save the other two; instead of losing two people, now only one will die. The rights to life and health, as well as the ethics principles of autonomy and non-maleficence are all compromised by this approach. That said, a thoroughly considered utilitarian view may take into account the overall (long-term) consequences of forcing the healthy person to donate both kidneys, such as possible social uproar and general disrespect for life that may ensue. This may ultimately sway the utilitarian to decide against such action, purely based on utilitarian principles.[3] Another problem of utilitarianism, however, is the inherent inability to foresee all possible consequences and to predict the future with absolute confidence.[3] The utilitarian may base decisions on insufficient information or incorrect assumptions about the future and this may ultimately lead to failure in achieving the greater good despite the utilitarian’s best attempts.

A further important criticism of Jeremy Bentham’s (1748 - 1832) concept of utility is that it attempts to measure all moral values on one scale (of happiness), which can easily translate into a single scale of monetary value in the hands of public policymakers such as managed care organisations.[3] Even though this would not be a true interpretation of Bentham’s utilitarianism (which would also account for emotional and other consequences of actions), Michael Sandel[6] points out that cost-benefit analysis – a common tool used in health economics – has a strong utilitarian underpinning in its attempt to reduce all values to one monetary measure. It would be dangerous to completely ignore concepts such as rights, emotions, sentiments and values attributed to human life and health. These concepts are intricately embedded in the very definitions of health and healthcare.[3]

Distributive justice To address the problems posed by a purely utilitarian approach to justice in healthcare, an approach such as that of Beauchamp and Childress’[2] provides a kind of ‘safety net’ to prevent the vulnerable from facing gross violation of their rights. They describe the principle of justice in the form of a ‘general approach’ to the questions on social justice and specifically distributive justice in healthcare. This principle is to guide the allocation of health resources and burdens within a society. They propose the recognition of ‘an enforceable right to a decent minimum of healthcare within a framework for allocation that incorporates both utilitarian and egalitarian standards’. [2] Their principle of justice draws on the social justice theory of John Rawls,[7] and incorporates his concept of justified unequal distribution, as long as its result is to the benefit of the least advantaged.[3,7]

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The prescribed minimum benefits: Prescribed minimum beneficence The prescribed minimum benefits (PMBs), as described in the regulations to the South African Medical Schemes Act of 1998,[1] recognise the need for provision of a basic minimum level of private healthcare. The regulations enforce the funding of these PMBs for all members of medical aid schemes, in order to alleviate some of the burden of care from the public health sector, and to guarantee access to a minimum level of healthcare coverage regardless of varying contributions from scheme members. The PMB regulations define a list of conditions typically requiring hospital-based care, common chronic conditions, and medical emergencies. The type of care included is further defined by treatment algorithms and prescribed treatments, also published under these regulations. The PMBs (albeit not without shortcomings) can be seen as a practical implementation of Beauchamp and Childress’s principle of distributive justice. This enforces a basic level of beneficence towards individual scheme beneficiaries, in order to protect their rights to basic healthcare where conflicts with justice arise. Conflicts may still arise, however, when medical scheme beneficiaries require care which is in excess of the basic minimum. Resource allocation according to the principle of distributive justice still supports rationing at a societal level, and at the coalface of healthcare delivery, this may come into conflict with individual appeals to beneficence, non-maleficence, and respect for autonomy.

Threats to autonomy The author predicts that autonomy will increasingly become an important bone of contention in the SA managed care context. Auto­ nomy entails an individual agent exercising freedom of choice, and in a medical context, these choices usually pertain to the agent’s body, health, and privacy. According to Beauchamp and Childress,[2] ‘liberty (independence from controlling influences) and agency (capacity for intentional action)’ are essential conditions for autonomy. The influence of medical schemes and their managed care organisations is primarily focussed on the funding of healthcare. In this context, patients and clinicians have the freedom of choice in the treatments they use or prescribe. Their choice may, however, be limited indirectly by the unavailability of funding. In following international trends, managed care in SA is increasingly moving towards more prescriptive practices to healthcare practitioners, with standardised ‘care path­ ways’ and incentives to influence clinician behaviour in a bid to promote cost-effective, quality care. These practices may threaten the autonomy of the patient and clinician.

Another important exercise in autonomy by the medical scheme member occurs when choosing the type of insurance cover to purchase. Members tend to underinsure themselves for various reasons. These include constraints on affordability of premiums, poor understanding of available benefit options and matching these against their own needs, and sometimes, a lack of discipline in providing for future healthcare and financial needs. The Consumer Protection Act[8] promotes informed decision-making when buying medical insurance products, but the industry still has some work to do to enhance this process. The complexity of the medical schemes legislation (particularly in terms of PMBs) further impedes informed decision-making by scheme members, who may harbour false assurance of insurance cover, which is often subject to complex

RESEARCH limitations. The unpredictability of some future healthcare needs further complicates this.

Moral complexity in managed care To further illustrate the conflicts generated by these philosophical considerations in the practical context, consider the employment of medical professionals by managed care organisations. The regu­ lations to the Medical Schemes Act[1] require that ‘qualified health care professionals administer the managed healthcare programmes and over­see funding decisions’. While the duties of these professionals are governed by the Medical Schemes Act, they also remain bound by other healthcare laws and ethics rules prescribed by the regulators of their professions. These include the Health Professions Council of South Africa (HPCSA), Nursing Council of South Africa, and the South African Pharmacy Council. The ethics guidelines of these organisations mainly focus on clinical practice, which is indeed relevant to the majority of their members. There are, however, no specific guidelines for the conduct of medical professionals in managed care or other administrative or public health management positions, and some of the existing guidelines and position statements by the HPCSA place these professionals in a precarious position of conflict with the Medical Schemes Act. The following examples demonstrate this: A policy document on undesirable business practices by the HPCSA[9] states the following under the section relating to managed healthcare: ‘The medical protocols, clinical guidelines and review criteria used by medical schemes and managed care organisations must be developed by doctors according to scientific criteria.

‘These guidelines should not be dictated or influenced by managers of HMO (health care management organisations) whose primary objective is cost-saving.’

Another section of the documents states ‘The HPCSA holds the view that all healthcare professionals should at all times act in the best interest of the patient and place the clinical needs of the patient paramount’.[9] If only considering the clinical evidence and ignoring the cost implications, medical professionals employed by managed care organisations would be failing their legal duties in terms of the Medical Schemes Act. Considerations of cost-effectiveness and affordability are as important, as recognised in the Regulations to the Medical Schemes Act[1], which state: ‘If managed healthcare entails limiting coverage of specific diseases … such limitations or a restricted list of diseases must be developed on the basis of evidence-based medicine, taking into account considerations of cost-effectiveness and affordability’.

In accordance with these regulations, medical professionals tasked with managed healthcare ought to base their decisions regarding the limitation of healthcare funding on clinical evidence as well as consi­ derations of cost-effectiveness and affordability, and cannot ignore the cost element, as prescribed by the HPCSA guidelines. By ignoring cost, these professionals would also fail in the application of the ethics principle of distributive justice. Pursuing only the best interests of the individual patient ignores the concerns of the broader society, and hampers the fair distribution of commonly-owned resources.[3] This example illustrates the conflict in the managed care environment between the principles of beneficence, along with non-

maleficence – underlying the concept of evidence-based medicine, where efficacy and safety are the main concerns – versus distributive justice. It also highlights the inadequacy of the existing professional ethics guidelines for doctors in catering for the complex situation in which medical advisors to medical schemes and managed care organisations function. Of concern is that, while the HPCSA General Ethical Guidelines for the Health Care Professions[10] do not provide for all eventualities by their own admission, they are construed to be ‘…a fairly comprehensive picture of what it is, in general, that binds any healthcare provider as a professional to his or her patients, as well as to others’ and ‘…that these duties, if not honoured without justification, may constitute the basis for sanctions being imposed on professionals by the Health Professions Council of South Africa’.[10] The important consideration of cost in managed healthcare, as legislated by the Regulations to the Medical Schemes Act,[1] is not accommodated for in the HPCSA guidelines, and action by medical professionals involved in managed care, based on such consideration, may be in conflict with these guidelines.

The Nursing Council and Pharmacy Council’s ethical guidelines appear more balanced with due consideration of justice. The Pharmacy Code of Conduct[11] places equal emphasis on duty towards the individual patient and to the public as a whole. The Nursing Code of Conduct[12] is explicitly binding on nursing practitioners in health policy and administration roles, among others. Throughout this document, the importance of larger societal considerations is emphasised. In its detailing of the principle of (social) justice, fairness, equity, and advocacy for the vulnerable are encouraged, also in the context of accessing healthcare resources. This is in contrast with the HPCSA guidelines,[10] where the concept of justice appears to be poorly developed: ‘Justice: Health care practitioners should treat all individuals and groups in an impartial, fair and just manner’.

‘Community: Health care practitioners should strive to contribute to the betterment of society in accordance with their professional abilities and standing in the community.’

In this guideline, practitioners are instructed to ‘deal responsibly with scarce healthcare resources’, refrain from unnecessary wastage, over servicing and participation in ‘improper’ financial relationships, while health policy makers are simply instructed to take into account the law, ethics, and human rights.[10] There appears to be a lack of appreciation of the principle of justice in the ethics guidelines for doctors, as compared to those for nurses and pharmacists, while all of these professions play important roles in the managed care and public health environment, where justice is paramount to ethical decision making. It is suggested that a more detailed explanation and emphasis on the concept of distributive justice – one so important in modern healthcare where costs keep rising but resources remain limited, and one that does not come to mind naturally in the western individualist paradigm – is required in the HPCSA guidelines. Doctors – both in managed care and in clinical practice – ought to be guided to not only act in the best interests of the individual patient, without due regard for the broader societal implications, and vice versa. This is applicable not only to considerations of resource limitation, but also to problems such as drug resistance. Irresponsible use of an antibiotic might not harm the individual patient today, but creates

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RESEARCH the opportunity for the development of drug-resistant infection, which has clear implications for society.[3] Distributive justice requires thoughtful deliberation in modern healthcare, both at individual and public levels of the healthcare system.

Recommendations All participants in healthcare have to appreciate their roles in a larger system where they have multiple responsibilities toward various other stakeholders. These include patients, healthcare practitioners, funders and managers of healthcare, manufacturers of drugs and equipment, healthcare organisations, society, government and future generations. These responsibilities impose ethical duties on each of these stakeholders, and though they may each have their individual functions and goals, they all need to function in recognition and respect of each other if they are to achieve the over-arching, ultimate goal of any healthcare system: the delivery of quality, universally accessible and sustainable healthcare.[3] Though burdening clinicians for solutions to the problems of health policy and funding would be unfair and unrealistic, it is suggested that a sound appreciation of distributive justice is indispensable in modern medical practice. Doctors and other healthcare practitioners are encouraged to appreciate their broader societal responsibilities and the role they have to play in the just distribution of scarce and unequally distributed healthcare resources.

Similarly, managed care organisations, funders and government also need to be cognisant of the claims and aims of all stakeholders in their approach to developing health policy and strategy.[3] As stated by Benatar, Daar and Singer:[13] ‘A framework that combines an understanding of global interdependence with enlightened, long-term self-interest has the potential to produce a broad spectrum of beneficial outcomes ...’

One way to protect the autonomy of all stakeholders in the pro­ gression towards standardised care pathways in the managed care environment would be the inclusion of each stakeholder in the development of such pathways or guidelines, and the maintenance of exception processes for situations which fall outside the norms. Indeed, the Welsh National Health Services (NHS) model[14] incorporates reporting on ‘variance’ from the standard as an essential part of a care pathway. This recognises the inherent complexity of medical practice, which frustrates the standardisation of guidelines and care. Unfortunately, exception processes generate additional administration burdens for all involved.

The challenge lies in balancing these burdens against the potential gains in quality and efficiency from carefully implemented care pathways.[15] Improved transparency regarding medical aid benefits will support informed decision-making by medical aid members. Brokers for medical insurance products are encouraged to take heed of the importance of well-informed decision-making in this regard. Revision of the PMB legislation, as mandated by the regulations,[1] should, among other things, aim to simplify the legislation and minimise the ambiguity it is currently fraught with. The recent attempts by the Council for Medical Schemes to provide more detailed benefit definitions are encouraging, but will not adequately address certain fundamental flaws in the regulations.

Lastly, there is a lack in ethics guidance for medical professionals working in managed care and health policy management, and the current guidelines by some professional bodies are conflicting and inappropriate for this small but important part of the SA healthcare system, while lacking clear guidance on the application

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of the principle of justice in modern healthcare. The professional guidelines for healthcare practitioners, and especially those by the HPCSA, may benefit from revision in order to accommodate medical personnel working in managed care, and other public health matters.

In its current form, misconceptions about the true definitions of unethical conduct may fuel conflicts between different stakeholders in the healthcare system, particularly between those concerned with individual patient care v. those responsible for public health policy and management. It is hoped that an understanding of the status quo may also help provoke critical appraisal and further development of the current ethics approach to public healthcare and funding in SA.

Conclusion The managed care moral landscape is complex. Managed care organisations and medical aid schemes are primarily concerned with the just and sustainable distribution of limited, pooled resources, while clinical practitioners mainly focus on meeting the needs of their individual patients. Patients also tend to be concerned with their individual, immediate needs when faced with threats to their own health, but are forced to contribute to, and utilise, pooled, limited funds from medical schemes for costly medical care. This inevitably brings the ethics principle of justice into conflict with the principles of beneficence, non-maleficence, and respect for autonomy of patient and healthcare professionals. Common understanding of the claims and ethical responsibilities of each of these stakeholders may promote the development of a more coherent, sustainable healthcare system by avoiding undue claims on commonly-owned resources, while ensuring a basic level of acceptable healthcare for all involved.

References 1. Republic of South Africa. Department of Health (South Africa). Regulations in Terms of the Medical Schemes Act, 1998 (Act No.131 of 1998). Pretoria: Government Gazette 1999.

2. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 5th ed. New York: Oxford University Press, 2001;58:272.

3. Hattingh L. Business versus health care: Are they compatible? Thesis for MPhil: Applied Ethics. Stellenbosch: Stellenbosch University, 2012:30-92.

4. Petrini C, Gainotti S. A personalist approach to public-health ethics. Bull World Health Organ 2008;86(8):577-656.

5. Rachels J, Rachels S. The Elements of Moral Philosophy. New York: McGraw-Hill, 2010:113.

6. Sandel MJ. Justice. What’s the Right Thing to Do? London: Penguin Books Limited, 2010:41.

7. Rawls J. Justice as Fairness (extracts from A Theory of Justice). In: Clayton M, Williams A, eds. Social Justice. Oxford: Blackwell, 2004:60.

8. Republic of South Africa. Consumer Protection Act; Act 68 of 2008. Pretoria: Government Gazette, 29 April 2009.

9. Health Professions Council of South Africa. Policy Document on Undesirable Business Practices. Pretoria: HPCSA, 2005:8-9.

10. Health Professions Council of South Africa. General Ethical Guidelines For The Health Care Professions Booklet 1. Pretoria: HPCSA, May 2008:5.

11. South African Pharmacy Council. The Code of Conduct for Pharmacists and Other Persons Registered in Terms of the Act. The South African Pharmacy Council. http:// www.e2.co.za/emags/CodeofConduct/pageflip.html (accessed 29 Oct 2014).

12. South African Nursing Council. Code of Ethics for Nusing Practitioners in South Africa. Pretoria: South African Nursing Council, May 2013:3-5.

13. Benatar S, Daar AS, Singer PA. Global health ethics: The rationale for mutual caring. In: Benatar S, Brock G, eds. Global Health and Global Heath Ethics.

Cambridge: Cambridge University Press, 2011:129-142.

14. Davis N, ed. National Leadership and Innovation Agency for Healthcare.

Integrated Care Pathways: A Guide To Good Practice. Llanarhan, Wales: National Leadership and Innovation Agency for Healthcare 2005:7-37.

15. Schrijvers G, van Hoorn A, Huiskes N. The care pathway: Concepts and theories: An introduction. Int J Integr Care 2012;12(Spec Ed Integrated Care Pathways):e192.

16. Republic of South Africa. Medical Schemes Act 131. Pretoria: Government Gazette 1998.

RESEARCH

The mandatory reporting of consensual, underage sex: Knowledge, practices and perspectives of social workers in KwaZulu-Natal Z Essack,1,2 BSocSci (Psyc), BSocSci (Hons), MSocSci (Research Psychology), PhD; A Strode,2 BA, LLB, LLM, PhD 1 2

KwaZulu-Natal Legislature, KwaZulu-Natal, South Africa School of Law, University of KwaZulu-Natal, Pietermaritzburg, Durban, South Africa

Corresponding author: Zaynab Essack (zaynab.essack@gmail.com)

Until recently, any sex or sexual activity with a person under the age of 16 was criminalised, regardless of consent. All such incidents were considered criminal offences and needed to be reported to the police. This paper explores the knowledge, practices and perspectives of seventeen social workers in KwaZulu-Natal in relation to their mandatory reporting responsibilities on consensual underage sex. All social workers were clear about their reporting responsibilities regarding child abuse and non-consensual underage sex. However, findings suggest that social workers were less clear on the exact circumstances in which they ought to report consensual underage sex. Most participants indi­ cated that they would make individual assessments about when to report underage consensual sex and sexual activity. Such decisions would be influenced by structural factors, the personal circumstances of affected children and the availability of other interventions to address early sexual activity. This study has shown that social workers are struggling to comply with mandatory reporting responsibilities involving underage consensual sex. Most social workers approach reporting of consensual sex and sexual activity differently to other reporting responsibilities and use a case-by-case approach. Given these findings, it is argued that parliament should consider reforming mandatory reporting provisions so that there is a distinction between the obligation to report consensual and non-consensual sexual offences against children. The mandatory obligation to report non-consensual sexual offences against children should remain but the obligation to report consensual sex or sexual activity should be discretionary and depend on the facts of each case.

S Afr J BL 2015;8(2):21-25. DOI:10.7196/SAJBL.435

Until recently, any sex (penetrative intercourse) or sexual activity (e.g. kissing, petting or hugging) with a person under the age of 16 was criminalised, regardless of consent.[1] All such incidents were considered criminal offences and needed to be reported to the police.[2] Despite these laws, many South African (SA) adolescents are engaging in consensual underage sex as evidenced by high rates of teenage pregnancy. For example, 36 702 school goers were pregnant in 2010.[3] Recent research in SA found that ‘many young adolescents are engaging in a variety of sexual behaviours ranging from kissing and touching to intercourse’.[4] Sections 15 and 16 of the Criminal Law [Sexual Offences and Related Matters] Amendment Act[1] (hereafter the ‘Sexual Offences Act’), which criminalised underage consensual sex and sexual activity have been extensively criticised. Commentators contended that criminalising consensual underage sex is incongruent with developmentally normative sexual practices among adolescents,[4-5] is incompatible with other legislation like the Children’s Act and the Choice of Termination of Pregnancy Act,[6-7] contrary to the principle of ‘the best interests of the child’ and inconsistent with children’s constitutional rights to bodily and psychological integrity and privacy.[6] A further criticism of the Sexual Offences Act was that it made it incumbent on all service providers, including doctors, social workers, psychologists and others to report consensual underage sex to a police official. This places practitioners ‘in an invidious position’ since client-provider relationships are founded on the principle of confidentiality.[5] Although the law had been in place for more than 5 years, few studies have detailed

service providers’ experiences with fulfilling their mandatory reporting responsibilities. Much of the international literature has focussed on the mandatory reporting of child abuse, including perspectives of service providers.[8.9] This paper is based on a qualitative study involving social workers and explores their knowledge, practices and perspectives on children’s evolving sexual and reproductive rights, including mandatory reporting responsibilities. The Constitutional Court recently found the criminalisation of consensual peer-group sex and sexual activity to be inconsistent with the constitution as it violated the rights of children.[10-11] Resultantly, sections 15 and 16 of the Sexual Offences Act were referred to parliament for amendment.[10] This article is timely as the recent decriminalisation of consensual underage sex has implications for mandatory reporting respon­ sibilities and only presents study findings regarding the mandatory reporting of underage consensual sex.

The legal framework: The age of consent to sex and accompanying mandatory reporting responsibilities Legal position prior to decriminalisation of consensual underage sex by the Constitutional Court

The Sexual Offences Act sets the age of consent to sex at 16.[1] Below the age of 12, the Act provides that children do not have the capacity to consent to sex and therefore any sexual activity with a person below this age amounted to rape.[1] A child aged 12 to 16 could consent to sex;

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RESEARCH however, the sexual act or activity was criminalised.[2] Furthermore, the Act mandated the reporting of all sexual offences against children to the police with section 54(1) stating any person ‘who has knowledge that a sexual offence has been committed against a child’ must report this ‘immediately’ to the police; failure to comply with this obligation was an offence.[1] This included consensual sexual encounters.

Situation following decriminalisation of consensual underage sex by the Constitutional Court The Constitutional Court found that sections 15 and 16 of the Sexual Offences Act violated a child’s rights to privacy and dignity and was not in their best interests.[10] It declared the sections invalid but suspended the declaration of invalidity for 18 months to allow parliament to rectify the constitutional defects in the Act.[10] In the interim, the court placed a moratorium on all arrests and prosecutions of teenagers aged 12 - 16 who engaged in consensual peer-group sex or sexual activity.[10] The judgment also narrowed the scope of mandatory reporting requirements in this interim period to consensual sex or sexual activity with children under the age of 12, and where one of the participants is aged 12 - 15 and the other is older than 16.[2,12] The National Assembly recently issued an amendment of sections 15 and 16 of the Sexual Offences Act in the form of the Sexual Offences Amendment Act Amendment Act (No 5 of 2015), which was signed into law in July 2015[13] (hereafter the ‘amendment’). In line with the Constitutional Court ruling, the amendment decriminalises all consensual sex or sexual activity between children aged 12 - 15; and when one partner is 16/17 and the other is 12 - 15, as long as there is no more than a two-year age difference between them.[13] This means that for example, if one child is 12 and the other is 16, consensual sex between them remains criminalised as there is more than a two-year age gap between them. It also remains a reportable sexual offence.[11]

Methodology

Sample and procedure Semi-structured interviews were conducted with 17 social workers across various districts in KwaZulu-Natal. Face-to-face interviews were conducted with 13 social workers and telephone interviews with an additional four. Except for the loss of ability to access social cues (e.g. body language) and the poor quality of telephone reception in one in­ter­view, telephone interviews provided data comparable to face-toface interviews. Interviews lasted 45 minutes to an hour.

Participants were purposively sampled based on their involvement in the care of children. Data were collected between November 2013 and January 2014. All participants provided their informed consent for interviews. Ethical approval for this study was obtained from the University of KwaZulu-Natal’s Human and Social Sciences Ethics Committee (HSS/0945/013).

Social workers’ practices and perspectives were thematically ana­lysed.[14] Key themes were developed inductively by listening to audio-recorded interviews and summarising each interview.

Emerging issues of relevance to the research questions were identified and portions of the interview that illustrated these issues were transcribed verbatim.[15] These emerging issues informed the development of a coding framework, which was refined in team discussions. Transcripts and summaries were coded according to this framework on QSR NVIVO 10 (a qualitative software package).

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Findings This section describes the knowledge, practices and perspectives of social workers in relation to their mandatory reporting of underage consensual sex.

Knowledge of reporting responsibilities All participants reported knowledge of mandatory reporting responsibilities in relation to abuse and underage non-consensual sex. Reporting of child abuse was considered unequivocal and all participants exercised their legal responsibilities in this regard.

However, many participants were less clear about reporting underage consensual sex. For example: ‘I don’t really know how the law works regarding consensual underage sex…’ (P10). This uncertainty about their legal reporting responsibilities was reflected in their lack of understanding of who is responsible for reporting and to whom. One respondent noted that she would seek guidance from her supervisor regarding whether to report such cases. Some assumed that reporting consensual underage sex to police was the parent’s prerogative and described informing parents of their responsibility. For example: ‘The only [thing] that I do, I consult the family member, ‘cause I feel that they are the ones who are responsible. As social workers we are also responsible but since there is a family member, who can be responsible for the child, let that person be responsible.’ (P9) ‘I encourage caregivers to open up cases.’ (P14) Only a few participants were aware of changes to the law regarding consensual underage sex and consensual sexual activity.

Reporting practices regarding underage consensual sex Few participants reported having experience with reporting consensual underage sex to a police officer. For example: R: ‘Why do you prefer not to report to SAPS?’ P9: ‘I don’t know, I felt I didn’t want to take the responsibility. I don’t want to take the responsibility in those cases ‘cause as I said if there is a family member, the only thing I can do is report that something is happening …

I don’t know if I have to do it or I don’t have to do it but I’ve never done it … unless maybe there is a paper that could say these are the things that we have to do as a social worker if you get such cases. Then I’ll be able to do it. And I’ll know when I get to the police station, who I’ll ask for because they are also not aware of these things.’

Instead, children engaging in consensual underage sex were offered counselling and referral to other services: ‘Sometimes we get the cases whereby children who were schooling together, maybe they were having sort of sex or videotaping whereby the other one is naked … we do the counselling with them and refer them to the Child Line.’ (P7) ‘I had a case yesterday. The mother of the child came. The child was 5 months pregnant, she’s 14 years old. The boyfriend is 16. Apparently the mother doesn’t want to open a case of rape but the father is saying its rape. So the child is saying the boyfriend didn’t rape her. So I just didn’t know what to do… I took the child in and offered counselling services to the child. And I asked her does she want to continue seeing me for

RESEARCH counselling services and she said no. So I found out from her did the boy rape you, she said no. Do you want to open a case, “no I agreed to having sex with my boyfriend”.’(P11) ‘I think that we just need to give them [the children] proper counselling…’

(P15)

Factors influencing reporting decisions While only a few participants had experience with reporting underage consensual sex to police, all participants were asked for their views on the appropriate actions in such circumstances. They were also asked to reflect on the factors that would influence their reporting choices. Some social workers reported that they would always report underage consensual sex: ‘Yes … it needs to be reported. It’s not something that they have to do.

They are not married, they are not adults.’ (P1) ‘…need to report so that maybe the one who do these things can be afraid of these police.’ (P5) However, many said that they would consider several factors in making reporting decisions. Some social workers perceived the age difference of minors as being important in determining to whom such cases should be reported. When the age difference was negligible, approaching parents was preferred, but where the age difference was significant, reporting to the police was deemed appropriate. For example: ‘When children are 10/11 then I would go to the parents but where a child is 11 and 16 I would normally go to the police.’ (P8) Others noted the potential trauma of children having to endure the criminal justice system and the psychological ramifications of being entered onto the Sexual Offences Register as being important factors when deciding whether to report: ‘…because they are in a relationship in their own way. There is nobody who has forced anyone … you just need to give them guidance and equip them with the necessary skills to deal with that … I don’t think it would help if you just send those children for criminal charges. I don’t think it would help them in any way. …if you put an element of criminality now, it’s going to even traumatise the child further.’ (P15) Children being in a ‘love relationship’ seemed to influence the social workers’ approach in favour of offering counselling and other programmes rather than criminalisation: ‘… they must get some programmes, both of them … because they say they are in a love relationship.’ (P4) Perceptions of the futility of reporting also deterred social workers from reporting. They considered that cases of underage consensual sex are unlikely to proceed since the implicated minors would be reluctant to report and/or testify. For example: ‘…there was two cases by the parent to two different social workers one was 16 and the other 15 years. The social workers did counselling, followed the protocol, the children refused. One was examined; the doctor confir­ med penetration. But they said they are not going to go to court as they feel they are in a relationship…. We term these cases statutory rape but if the

girl does not want to testify we cannot go to court. One of the girls refused to testify, she went missing. So there are a lot of challenges.’ (P2) A few participants regarded the manner in which cases are processed in the justice system as being a deterrent to reporting consensual underage sex. It was noted that some South African Police Services (SAPS) officers are themselves reluctant to open cases because often prosecutors decline to proceed with the matter and simply return these cases to social workers. For example: ‘Yes I have [previously reported consensual underage sex]. The girl was 16 she was “gang raped” by three men but she kept saying it was consensual and I asked her how it was consensual, you can’t have sex with three men, but we have no idea of the case developments. I find it frustrating to deal with such cases because the courts toss them back to you so I get the families together.’ (P8) ‘Most of the cases the perpetrators have not been prosecuted … never, never, never.’ (P17) Finally, the opinion of the parents was a consideration, with some suggesting that socio-cultural taboos may deter parents from reporting consensual underage sex to the authorities. For example: ‘We don’t get a lot of support from the parents sometimes. Like they don’t want to open cases.’ (P12) ‘It becomes a challenge in such cases because even though the elders/ the adults in the families are aware, they will try not to report the matter ‘cause it’s like taboo or something … it should be kept in the family. Pay or slaughter a goat or something…’ (P13)

Awareness of penalties for failing to report The Sexual Offences Act stipulates that any person failing to com­ ply with the obligation to report knowledge of a sexual offence committed against a child, commits an offence and may be sentenced to a fine or a maximum of 5 years in prison or both.[1] Awareness of this penalty among participants was variable. Some reported not being explicitly aware of the penalty: ‘I haven’t heard of anything.’ (P14) Some assumed that a penalty may be likely for failing to report. For example: ‘Because I would have put maybe a child’s life in danger by not reporting so I think there would be disciplinary measures … But none that I’ve been trained or informed of.’ (P10) A few participants were aware of the penalty because of information from supervisors, or their knowledge of various Acts. For example: ‘It’s in the Children’s Act, you have to report… I do know it’s a criminal offence and I will be charged for it because I’m hiding something that may harm the child, so why am I not reporting? So I do know. What charges that might be imposed on me, I’m not sure but I do know that it’s a criminal charge.’ (P12) ‘I know. One is you can be found guilty of an offence if you knew about the case and you just kept quiet and didn’t report.’ (P16)

Discussion This article explored the knowledge, practices and perspectives of social workers in relation to their mandatory reporting responsibilities

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RESEARCH on consensual underage sex. Given their central involvement with children and families, social workers are ideally positioned to intervene on behalf of children and also to advocate for their wellbeing, welfare and protection.

All social workers were clear about their mandatory reporting res­ pon­ sibilities regarding child abuse. However, findings suggest that social workers were less clear on the exact circumstances in which they ought to report consensual underage sex.

There were also low levels of compliance in terms of reporting all cases of underage consensual sex to the SAPS. Table 1 below outlines mandatory reporting obligations according to the amended Act.[13] Despite legal requirements, most participants indicated that they would make individual assessments about when to report underage consensual sex and sexual activity. These findings resonate with research conducted with healthcare providers.[16] Few healthcare providers fulfilled their mandatory reporting responsibilities. Decisions to report were influenced by factors such as a patient’s age, the consequences of reporting and the impact on confidentiality.[16] Factors considered to influence reporting decisions in this study can be clustered in three main categories: • Structural factors related to perceptions that police are dismissive of consensual underage sex cases, and that even when these cases are reported to police they are ultimately reverted to social workers.

Therefore reporting was considered a futile exercise that may unnecessarily burden the justice system.

• The personal circumstances of the affected children including their age, the age differences between children, and whether they claimed to be in a loving, consensual relationship would inform reporting decisions. This more flexible approach resonates with some factors outlined in the Children’s Act in terms of applying the ‘best interests of the child’ principle, including considering ‘the child’s age, maturity and stage of development, gender, background and any other relevant characteristic of the child’.[11] Sensitivity to personal circumstances also indicates cognisance that consensual sexual exploration among adolescents is developmentally normative.[4] Age difference was one of several factors considered by social workers in this study when deciding whether to report consensual underage sex. This is contrary to the approach in the recently amended Act[13] which makes age difference the sole factor guiding whether the behaviour will attract criminal sanction.

• Social workers considered the availability of other interventions to address early sexual activity, such as counselling or the in­ volve­ ment of parents. Such interventions were favoured given concerns that reporting to the police may result in children being inappropriately exposed to the criminal justice system, which may result in psychological harm.

Table 1. Mandatory reporting obligations of service providers in relation to the Sexual Offences Amendment Act Amendment Act[13] Consensual sex/sexual activity: legal (√) illegal (×)

Reporting responsibilities

If either participant is below 12 years

Rape

Report

Any age

Non-consensual

Report

Age of A

Age of B

12,13, 14 or 15

12, 13, 14 or 15

√

Do not report

12

16

×

Report

12

17

×

Report

13

16

×

Report

13

17

×

Report

14

16

√

Do not report

14

17

×

Report

15

16

√

Do not report

15

17

√

Do not report

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These perceptions resonate with recent Constitutional Court findings that we must be mindful of the long-term implications of actions we take against children as they have a right to ‘learn as they grow how they should conduct themselves and make choices in the wide and moral world of adulthood’.[17] The court found that the age of consent should remain at 16, however this norm should not be enforced through criminalising underage consensual sex.[10] Furthermore, compounding the immense stigma and shame associated with being convicted of a sexual offence are the negative impacts on future work prospects, including that offenders are prohibited from working with children.[5,17] Finally as with healthcare providers,[16] confidentiality is a guiding principle of social work practice, and sometimes reporting information disclosed confidentially may undermine trust in the social worker-client relationship.[11] Of the social workers who had experience with cases of underage consensual sex, only a few opted to report to authorities for the reasons outlined above. However, none of the participants in this study described experiencing any disciplinary or legal penalty for not complying with their mandatory responsibilities, which suggests that this law may be difficult to enforce. It also calls into question whether the rigidity of the mandatory reporting responsibilities are achieving their purpose of protecting child victims of sexual offences.

Given the small sample size, the practices and perspectives presented here may not be representative of all social workers in KwaZulu-Natal or SA more broadly.

Nevertheless, it is possible to argue that the issues raised by the sample might be identified in the general context of social work practice vis-à-vis mandatory reporting responsibilities.

Conclusions Although the issue of criminalising con­ sensual underage sex was recently before the Constitutional Court it was never argued in this case that the overly broad mandatory reporting provisions were inconsistent with the constitution but rather that the impact of criminalising consensual underage sex was heightened by them.[10] In other words the Constitutional Court was not asked to

RESEARCH consider whether the mandatory reporting responsibilities violated children’s constitutional rights. Nevertheless, the amendments do narrow the reporting obligations of service providers in terms of consensual underage sex. However, they do not completely absolve providers of their mandatory reporting duties (see Table 1), which may still present complex ethical conflicts for providers, as detailed elsewhere.[2] This study has shown that social workers are struggling to comply with reporting responsibilities involving underage consensual sex. Most social workers approach reporting of con­ sensual sex and sexual activity differently to other reporting responsibilities and use a case-by-case approach. Given this context, it is argued that parliament should consider reforming section 54 of the Sexual Offences Act [11] so that there is a distinction between the obligation to report consensual and non-consensual sexual offences against children. The mandatory obligation to report non-consensual sexual offences against children should remain but the obligation to report consensual sex or sexual activity should be discretionary and depend on the facts of each case. Furthermore, detailed training should be provided to social workers and other service providers to enable them to apply the recent changes in the law.

Acknowledgements. This study was undertaken as part of the oversight activities of the Social Development Portfolio Committee at the KwaZulu-Natal Legislature. The views expressed in this paper do not necessarily reflect those of the Social Development Portfolio Committee or the KwaZulu-Natal Legislature. Thanks are extended to Ms Jacintha Toohey for her assistance with data collection. Sincere thanks go to all the respondents who participated in interviews and to Dr Ngcongo of the Department of Social Development for assistance with access to social workers.

References 1. Republic of South Africa. Criminal Law (Sexual Offences and Related Matters) Amendment Act No. 32 of 2007. Pretoria: Government Printer 2007.

2. Strode A, Toohey J, Slack C, et al. Reporting underage consensual sex after the Teddy Bear case: A different perspective. S Afr J Bioeth Law 2013;6(2): 45-47. [http://dx.doi.org/10.7196/sajbl.289] 3. Department of Basic Education. Annual School Surveys: Report for Ordinary Schools 2010 and 2011. South Africa: Department of Education, 2013. http://www.google.co.za/url?sa=t&rct=j&q=&esrc=s&frm=1&source=w eb&cd=1&ved=0CCgQFjAA&url=http%3A%2F%2Fwww.education.gov. za%2FLinkClick.aspx%3Ffileticket%3D8mBPHBmAGY0%253D%26tabid%3D3 6%26mid%3D2514&ei=G8IyU-3CGYS6ygP14LYAg&usg=AFQjCNFRTlLXj12HW zSTFIH0qjEjCHcfww&sig2=vSZHrVN6431GSPWl9TpgSA&bvm=bv.63738703,d. bGQDownloadFileAction?id=67892 (accessed 11 November 2014).

4. Gevers A, Mathews C, Cupp P, et al. Illegal yet developmentally normative: A descriptive analysis of young, urban adolescents’ dating and sexual behaviour in Cape Town, South Africa. BMC Int Health Hum Rights 2013;13(1):31. http://www.biomedcentral.com/ content/pdf/1472-698x-13-31.pdf (accessed 23 November 2014).

5. Perumal D. Misguided reform: Regulating consensual sexual activity between adolescents in South African law from a gender perspective. Agenda 2013;27(3):107-117. [http://.dx.doi.org/10.1080/10130950.2013.849789] 6. McQuoid-Mason D. Decriminalisation of consensual sexual conduct between children: What should doctors do regarding the reporting of sexual offences under the Sexual Offences Act until the Constitutional Court confirms the judgment of the Teddy Bear Clinic case? S Afr J Bioeth Law 2013;6(1):10-12. [http://dx.doi.org/10.7196/SAJBL.257] 7. Strode A, Slack C, Essack Z. Child consent in South African law: Implications for researchers, service providers and policy-makers. S Afr Med J 2010;100(4):247-249.

8. Delaronde S, King G, Bendel R, Reece R. Opinions among mandated reporters toward child maltreatment reporting policies. Child Abuse Negl 2000; 24(7):901910. [http://dx.doi.org/10.1016/S0145-2134(00)00151-4] 9. Savell S. Child sexual abuse: Are health care providers looking the other way? J Forensic Nurs 2005;1(2):78-82. [http://dx.doi.org/.10.1111/j.1939-3938.2005.tb00018.x] 10. Teddy Bear Clinic for Abused Children and Another v. Minister of Justice and Constitutional Development and Another [2013] ZACC 35 11. Mahery P. Reporting sexual offences involving child patients: What is the current law following the Constitutional Court judgement? S Afr J Bioeth Law 2014;7(1):26 -29.[http://dx.doi.org/10.7196/sajbl.303] 12. McQuoid-Mason DJ. The Teddy Bear Clinic Constitutional Court case: Sexual conduct between adolescent consenting children aged under 16 years decriminalised and a moratorium on the reporting duties of doctors and others.

S Afr Med J 2014;104(4):275-275. [http://dx.doi.org/10.7196/SAMJ.7653] 13. Republic of South Africa. Criminal Law (Sexual Offences and Related Matters) Amendment Act Amendment Act, No 5 of 2015. Pretoria: Government Printer 2015. http://pmg-assets.s3website-eu-west-1.amazonaws.com/38977_7-7_Act5of2015CriminalLaw_a.pdf (accessed 10 July 2015).

14. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3(2):77-101. [http://dx.doi.org/10.1191/1478088706qp063oa] 15. Silverman D. Doing qualitative research: A practical handbook. 2nd ed. London: Sage Publications. 2005.

16. Hoffman-Wanderer Y, Carmody L, Chai J, Röhrs S. Condoms? Yes! Sex? No! Conflicting responsibilities for healthcare professionals under South Africa’s framework on reproductive rights. University of Cape Town:The Gender, Health & Justice Research Unit. 2013. http:// www.ghjru.uct.ac.za/pdf/Condoms_Yes_Sex_No.pdf (accessed 18 February 2015).

17. J v. National Director of Public Prosecutions and Another 2014 (7) BCLR 764 (CC).

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RESEARCH

Public health and social justice: Forging the links L Horn, MB ChB, DTM&H, DCH(SA), MPhil (Applied Ethics), Diploma: International Research Ethics, PhD Centre for Applied Ethics, Department of Philosophy and Division for Research Development, Stellenbosch University, South Africa Corresponding author: L Horn (lhorn@sun.ac.za)

The purpose of this article is to explore the concept and scope of public health and to argue that particularly in low-income contexts, where social injustice and poverty often impact significantly on the overall health of the population, the link between public health and social justice should be a very firm one. Furthermore, social justice in these contexts must be understood as not simply a matter for local communities and nation-states, but in so far as public health is concerned, as a matter of global concern and responsibility. The interpretation of the scope of public health by any particular nation is I believe contingent on the current socio-political context and the conception of social or distributive justice that underpins this context. Furthermore I will argue here that the link between public health and social justice ought to be founded on a conception of social justice that adequately addresses issues of social injustice, and patterns of systematic disadvantage, that contribute to ill health and that so commonly prevail in many low- and middle-income social contexts.

S Afr J BL 2015:8(2):26-29. DOI:10.7196/SAJBL.437

A review of the current literature quickly reveals that the answer to the question ‘What is public health?’ is not a straightforward one and appears influenced by many factors, not least socio-political context.[1] ‘This is understandable as one of the key points of contention in public health is the legitimate extent of the role and responsibility of the state or government in the health of its citizens. Furthermore, social justice in these contexts must be understood as not simply a matter for local communities and nation-states, but in so far as public health is concerned, as a matter of global concern and responsibility’.[1] The purpose of this article is to explore the scope of public health and to argue that particularly in low income-contexts, where social injustice and poverty often impact significantly on the overall health of the popu­ lation, the link between public health and social justice should be a very firm one. ‘The concept of public health is often presented as objective and without underlying value considerations. The definition of public health, as an approach to health that is concerned primarily with the health of communities or populations and delivered primarily by organisations or government rather than individuals, is generally accepted. However what is contested is the scope of what falls under the umbrella of public health and the identification of those responsible for delivering this entity, ‘public health’. This is where value considerations are drawn into the dis­cussion.

The interpretation of the scope of public health by any particular nation is I believe contingent on the current prevailing sociopolitical context and the conception of social justice that underpins this context.[1] I use the term social justice broadly, in line with Burris and Anderson,[2] to incorporate a range of values such as ‘human rights, social equality and distributive justice’.[2] Furthermore I will argue here that the link between public health and social justice should be closely forged and that public health ought to be founded on a conception of social justice that adequately addresses issues of social injustice and ‘patterns of systematic disadvantage’ that contri­ bute to ill health and that so commonly prevail in many lowand middle-income social contexts.[3] A detailed comparative analysis of different theories of social justice is not the focus of this paper and shall not be attempted. However, I shall support a broadly essentialist view of social justice as developed by authors such as Nussbaum, Sen[4] and more

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recently Powers and Faden.[3] I shall conclude this paper by introducing the notion, in line with cosmopolitan theorists, that affluent nations do have an obligation – founded in justice and not merely altruism or beneficence – to share the responsibility of the burden of public-health implementation in low income contexts. Due to word limitations this argument cannot be expanded here, but will be developed in a separate paper.

Conceptions of public health One of the earliest conceptions of public health was published in 1920

by Winslow,[5] then Professor of Public Health at Yale. This definition was one of the first attempts to define the scope of public health:[1] ‘Public health is the science and art of (1) preventing disease, (2) prolonging life and (3) organised community efforts for (a) the sanitation of the environment, (b) the control of communicable infections, (c) the education of the individual in personal hygiene, (d) the organization of medical services for the early diagnosis and prevention of disease, and (e) the development of a social machinery to ensure everyone a standard of living adequate for the maintenance of health, so organizing these benefits as to enable every citizen to realize his birthright and longevity.’ [5] The Institute of Medicine (IOM) in its 1988 report entitled The Future of Public Health gives a broader definition of public health.

The IOM definition has three parts, namely mission, substance and organisational structure:[1,6] • The mission of public health as: the fulfillment of society’s interest in assuring the conditions in which people can be healthy.

• The substance of public health as: organised community efforts aimed at the prevention of disease and promotion of health. It links many disciplines and rests upon the scientific core of epidemiology.

• The organisational framework of public health: to encompass both ac­tivi­ties undertaken within the formal structure of government and the associated efforts of private and voluntary organisations and individuals.[6] The Royal College of Physicians,[7] UK defines public health as: ‘The science and art of preventing disease, prolonging life and promoting

RESEARCH health through organized efforts of society’. The Nuffield Council on Bioethics[8] also uses the above definition, but adds that two notions are of particular importance when trying to define the scope of public health, namely the importance of prevention and the notion that public health is achieved by ‘collective effort’.[1,7,8,9] The definitions presented above all appear to be fairly neutral, descriptive definitions although some do have normative elements.

They all have common themes and by looking at their commonalities one can start to develop a better idea of ‘What is public health?’

The following are some of the themes or phrases that appear repeatedly: ‘prevention of disease’, ‘promotion of health’, ‘organised effort of society’, ‘health of populations’ or ‘people’, ‘conditions under which people can be healthy’. Therefore a minimum conception of public health could be some form of organised or collective effort undertaken to promote the health of a community or population, particularly by preventing disease. Underlying the apparent broad agreement with this concept is considerable disagreement with respect to interpretation of the scope of public health. The main areas of contention are: Who is in fact responsible for this ‘organised effort’ of health promotion and disease prevention and, what is or should be the extent of that responsibility? Does it include ensuring that ‘conditions exist under which people can be healthy?’[8] What should the extent and reach of the authority be, by those recognised as having this responsibility, to fulfil the goals of health promotion and disease prevention?[1] A useful discussion of the concept of public health is presented

by Dawson and Verweij.[10] They note that Winslow’s definition sets out the traditional field of public health as those activities such as water sanitation, disease surveillance, health education, etc, that can be undertaken to promote health and prevent disease. More recent definitions and discussions however, like those reflected above, do appear to be widening the field of public health to include a range of factors that may influence the conditions under which people can or cannot live healthy lives. Dawson and Verweij[10] see this as potentially problematic. ‘If we employ such an approach, any intervention aiming at improving well-being is likely to count as a matter relevant to public health. The concept of “public health” essentially just collapses into that of generating wellbeing or welfare: as a result such a concept arguably loses any useful purpose’.[10] They therefore caution against defining the concept of public health too broadly. They continue to explore the concept by focusing on the two senses of ‘public’ in ‘public health’, namely: public as meaning health of populations or communities of people; and ‘public’ as meaning a ‘collective’, as in organisational group responsible for health prevention and promotion. Therefore, the ‘practice of public health (roughly) consists of collective interventions that aim to promote and protect the health of the public’.[10] These interventions are aimed at the population as a whole, rather than at individuals, and the effect of such interventions or outcome measures should be apparent at population level. However, the distribution of health within a population is as important as the overall aggregation of health improvement, as are ‘the underlying social and environmental conditions that might affect the health of each member of the public’.[1,10] The second sense of ‘public’ discussed by Dawson and Verweij[10] is the notion of a ‘collective intervention’, namely, that public health does not involve the actions of individuals but rather collective

actions in the form of policies or programmes. Unlike authors proposing a particularly narrow view of public health, they concede that these collective efforts may involve both government and other organisations like non-governmental organisations (NGOs) and, to be successful often involve the cooperation and participation of members of the public themselves.[1].

Lawrence Gostin[11] who has written extensively in this field, states that ‘the problem with an expansive view, is that public health becomes limitless, as almost everything human beings undertake affects public health.[10] Gostin’s concerns are mainly pragmatic as by adopting such a wide approach the ‘field lacks precision’ and ‘lacks a discrete expertise’. He also notes that ‘by espousing controversial issues of economic redistribution and social restructuring the field becomes highly political’.[1,11] Mark Rothstein[12] argues against a broad agenda for public health and proposes instead a particularly narrow view which is diametrically opposite. He discusses three different approaches to public health which he describes as: ‘human rights as public health’, ‘population health as public health’, and ‘government intervention as public health’, rigorously supporting the last approach.[11] In his view health and health choices should remain predominantly the concern and domain of individuals, unless central action is required to protect lives such as in a pandemic. The human rights approach to public health is considered by Rothstein to be an inappropriately broad approach and Rothstein’s objections to it are in accordance with Gostin’s[11] argument above. Rothstein states: ‘Individuals trained in public health should not give up the noble struggle to ensure that every person has a minimum standard of living to support a healthy life. But this battle must be fought together with people from all disciplines and all walks of life and without using the self-defeating strategy of annexing human rights into the public health domain’.[1,12] The Nuffield Council on Bioethics published an extensive report in December 2007 entitled Public Health: Ethical Issues and devoted the first chapter largely to attempting to define the scope of public health.[8] Their discussion contrasts significantly with Rothstein’s view and is situated within the context of the UK’s National Health System (NHS). They note that the NHS is an important part of the UK’s public health system as it is: ‘…considered too important to be left to private suppliers alone …

Focusing on equity and fairness considerations, there is a risk that a fully privatised approach would increase inequalities. …The reduction of health inequalities must be one of the principal aims of public health policy. The provision of some form of public healthcare system …is therefore a public service of exceptional value, complementing other forms of public health initiatives, such as provision of clean water.’[8] This more egalitarian approach to healthcare, in general seems to re­ sult in a broader approach to public health in which the boundaries be­tween individual healthcare and service-provision measures, aimed primarily at socioeconomic factors such as housing, and other public health initiatives, are blurred. The central obligation for public health is placed clearly at government level but other role players are not excluded. ‘The role of government is to provide certain key services that should not be left to the market alone, and to establish the rules under which different agents operate in a way that is compatible with promoting health and reducing inequalities’.[1,8]

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RESEARCH Linking public health to social justice Much has been written over the last two decades on the link between public health and social justice. Some authors are supportive of some conception of social justice – often a version of essentialism or capability theory – as an appropriate foundation for public health and others, such as Rothstein,[12] are not. I believe there is always some link between social justice and public health. All nation-states have some form of political system that influences distributive justice, ranging from libertarianism to socialism and beyond, and this influences public health policy. A state or government that upholds a libertarian conception of justice, where the protection of rights to property, liberty and privacy are paramount, may well support a fairly narrow conception of public health in comparison to a government who adheres to a more egalitarian conception of social or distributive justice more generally. Alternatively a nation that pays little or no attention to the protection of human rights and civil liberties and the avoidance of social injustice is likely to promote a model of public health that is possibly paternalistic and probably autocratic.

South Africa (SA), a country that has undergone a dramatic political transition, illustrates this point well. The apartheid government’s interpretation of social justice (1948 - 1994) significantly influenced the biased implementation of both health service provision and the scope of public health practice. During apartheid non-white women and children were largely confined to rural areas with limited access to health promotion and disease prevention programmes, such as antenatal care and childhood vaccination. Therefore preventable events such as high rates of infant and maternal mortality were not uncommon in these areas.[13,14] The post-apartheid era has seen a considerable widening of both public health programmes and the scope of health services that are now delivered by the state. Even so, the scope of these services, including public health disease prevention programmes, has been highly contentious and a matter of great controversy in the recent past. The court action by the Treatment Action Campaign (TAC)[15] regarding the very slow implementation of HIV prevention programmes including Prevention of Mother to Child Transmission (PMTCT) is a case in point.

In many other low-income countries, particularly on the African, Indian and Asian continents, the burden of disease and life expectancy is inextricably linked to poverty and persistent patterns of discrimination, most notably discrimination against women. The World Health Organization (WHO) commission report on the social determinants of health, published in 2008, confirms this link.[16] An increasing number of scholars are making a case for forging a tight link between a theory of social justice that can adequately address the social injustices and ‘patterns of systematic discrimination’ that so often exist in poor or marginalised communities, and the practice of public health.[3] Powers and Faden[3] are such authors and they devote their book ‘Social Justice: The moral foundations of public health and health policy’ to this argument. They describe the ‘standard view’ of the moral foundation of public health as resting on ‘general obligations in beneficence to promote good or welfare’.[3] Furthermore, the ‘standard view’ is usually understood to: ‘[H]ave utilitarian commitments to bring about as much health as possible. Concerns about justice, like concerns about respect for individual liberties, are understood as ethical considerations external to the moral purpose of public health that serve to balance public health’s

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single-minded function to produce the good of health with other right making concerns. In these discussions, justice is almost entirely presented as a distributional principle.’[3] They argue that public health cannot be focused only on outcomes but rather should be based on broader notions of well-being that ‘capture what we believe are the twin moral impulses that animate public health: to improve human well-being by improving health and to do so in particular by focusing on the needs of those who are the most disadvantaged’.[3] Chapter four has as its chief focus a discussion of ‘Justice, Sufficiency and Systemic Disadvantage’ and highlights what is generally well accepted; that the social injustice and poverty that is so prevalent in many developing world countries fosters poor health and disease and limits well-being.[3,17] Powers and Faden identify six dimensions of well-being which they argue matter to everyone, no matter where in the world one lives. The purpose of public health programmes and policy should be to ensure a sufficiency of wellbeing in each of these dimensions: health, personal security, self-determination, attachment, reasoning, and respect.[3] Other scholars, such as Jennifer Prah Ruger,[18] have recently used the essentialist sufficiency approach to social justice developed

by Martha Nussbaum and Amartya Sen[4] to expand the literature, arguing for a strengthening of the link between health delivery, in a broad sense, and social justice. Other authors have demonstrated the usefulness of Powers and Faden’s[3] ‘sufficiency of well-being’ theory in holistically addressing real public health problems such as fetal alcohol syndrome and human papilloma virus infection at a community level.[19,20] What is perhaps less clear though, is not that a good theory of justice would be a useful moral foundation for public health particularly in low- and middle-income countries and communities, but rather whose moral responsibility is it to deliver on the promises articulated by such a theory?

Charles Beitz[21] was one of the earliest scholars to argue in response to John Rawls that members of affluent societies do have obligations founded on justice, not merely humanitarian obligations or those based on beneficence, to ‘share their wealth with poorer people elsewhere’.[22] Heywood and Shija[23] have used the SA context to illustrate the enormity of the public health challenge that SA faces now, even with a constitution that is based on a comprehensive Bill of Rights and a government that is committed to introducing National Health Insurance and providing antiretroviral therapy (ART) to an estimated extra 500 000 people a year who will need it. Therefore they ask the question ‘Should the duty to fulfill the right to health in this context be SA’s alone?’[23] In line with cosmopolitan theorists[21] they make the point that the extraordinary burden of disease experienced by low-income countries is not just due to local issues and corruption but ‘often has historical determinants that go back centuries’. These include slavery, colonialism, the cold war and of course, in SA, apartheid. Migrant labour and gold mining contributed significantly to the current epidemiology of both tuberculosis and HIV. Heywood and Shija[23] conclude that an internationally accepted framework and standard for global health is a ‘moral legal; political and public health imperative’.

Furthermore such a framework must not rely on the ‘vagaries and subjective priorities of different political administrations in the USA, Canada and the EU’.

RESEARCH Conclusion What is ‘public health’ then? I think it is fairly easy to accept that public health is about the health of societies and communities rather than the health of individuals. Public health is also generally a public enterprise undertaken by organisations and governments.[10] This much appears to be largely uncontested. What remains far more contentious, and inevitably influenced by some conception of social justice (however that may be conceived), is the exact scope or range of programmes and interventions that will fall under the umbrella of public health; and the role, responsibility and authority of any given entity to implement these programmes.

The argument proposed in this paper addresses three aspects of public health. The first is that the moral foundation of public health, particularly in low-income or otherwise vulnerable communities, ought to be closely linked to a broad, well-justified and appropriate con­cept of social justice that can serve as the bedrock for public health interventions. These interventions will prevent disease and promote health by simultaneously addressing the underlying determinants of ill health such as poverty, poor food security, lack of education and gender and race discrimination. This would mean that the scope of public health will be broader than that proposed by authors such as Dawson and Verweij,[10] and include things like domestic violence and prevention of fetal alcohol abuse. Second, although I have not argued in favour of one specific theory of justice, as this was not the main focus of this paper, I am broadly in agreement with those theories that are essentialist in nature such as those proposed by Nussbaum and Sen,[4] and Faden and Powers,[3] as I believe this bottom-up, non-ideal approach is both practical and holistic. Finally, I have introduced the idea that the obligations imposed by such a theory of justice, acting as the moral foundation of public health in vulnerable and low-income communities, cannot be the responsibility of such communities or nation-states alone, but that well-resourced nations have an obligation founded on justice, not merely altruism or beneficence, to assist low- and medium-income countries to address public health issues (this is argued for elsewhere).

Acknowedgement. Prof. Anton van Niekerk as promotor of my PhD thesis from which this paper is adapted. Gail Robinson for valuable editorial assistance. The Andrew W Mellon Foundation for financial assistance to complete doctoral studies.

References 1. Horn LM. Virtue ethics in the development of a framework for public health. PhD thesis. Stellenbosch: Stellenbosch University, 2010:22-30. https://scholar.sun.ac.za/ handle/10019.1/5418. Excerpts from this paper have been taken directly from this thesis.

2. Burris S, Anderson ED. A framework convention on global health: Social justice lite, or a light on social justice? J Law Med Ethics 2010;38(3):580-93. [http://dx.doi. org/10.1111/j.1748-720x.2010.00513.x] 3. Powers M, Faden R. Social justice: The moral foundations of public health and health policy. Oxford: Oxford University Press, 2006;4:80-99,16-29.

4. Nussbaum MC, Sen AK. The Quality of Life. Oxford: Clarendon, 1993.

5. Winslow CEA. The untilled field of public health. Modern Medicine 1920;2:83.

6. Institute of Medicine. The future of public health. Washington DC: National Acadamies Press,1988. http://www.nap.edu/openbook.php?record_id=1091 (accessed 17 December 2014).

7. Faculty of Public Health. What is Public Health? London: Faculty of Public Health, 2015. http://www.fph.org.uk/what_is_public_health (accessed 17 December 2014).

8. Nuffield Council on Bioethics. Public Health: Ethical Issues. London: Nuffield Council on Bioethics, 2007:6-9.

9. Horn L, Mwaluko G. Public health research ethics. In: Kruger M, Ndebele P, Horn L, eds. Research Ethics in Africa: A resource for Research Ethics Committees.

Stellenbosch: SunMeDIA, 2014.

10. Dawson A, Verweij M, eds. Ethics, prevention and public health. Oxford: Oxford University Press, 2007:17-25.

11. Gostin LO. Public health, ethics, and human rights: A tribute to the late Jonathan Mann. J Law Med Ethics 2001;29(2):121-130.

12. Rothstein MA. Rethinking the meaning of public health. J Law Med Ethics 2002;30(2):144-149. [http://dx.doi.org/10.1111/j.1748-720X.2002.tb00381.x] 13. Mechanic D. Apartheid medicine. Society 1973;10(3):36-44.

14. Coovadia H, Jewkes R, Barron P, Sanders D, McIntyre D. The health and health system of South Africa: Historical roots of current public health challenges. Lancet 2009;374(9692):817-834. [http://dx.doi.org/10.1016/50140-6736(9)60951-X] 15. Treatment Action Campaign (TAC) . Open letter to minister of international relations: Intervene in Karabus caase. Cape Town: TAC, 2015. http://www.tac.org.za/community/ (accessed 17 December 2014).

16. World Health Organization. Commission on Social Determinants of Health. Closing the Gap in a Generation. Health Equity Through Action on the social Determinants of Health. Geneva: World Health Organization, 2008. http://whqlibdoc.who.int/ publications/2008/9789241563703_eng.pdf?ua=1 (accessed 20 February 2014).

17. Daniels N, Kennedy BP, Kawachi I. Why Justice is Good for our Health: The Social Determinants of Health Inequalities. Daedalus 1999;128(4):215-251. http://www. jstor.org/stable/20027594 (accessed 17 December 2014).

18. Prah Ruger J. Health and Social Justice. New York: Oxford University Press, 2010.

19. Horn L. Powers and Faden’s theory of social justice applied to the problem of foetal alcohol syndrome in South Africa. Pub Health Ethics 2013;6(1):3-10.

20. Thompson A. Human papilloma virus, vaccination and social justice: An analysis of a Canadian school-based vaccine program. Pub Health Ethics 2013 6(1):11-20. [http://dx.doi.org/10.1093/phe/pht010] 21. Beitz CR. Justice and international relations. Phil Pub Affairs 1975 4(4):360-389.

22. Rawls JA. Theory of Justice. Revised ed. London: Oxford University Press, 1999.

23. Heywood M, Shija J. A global framework convention on health: Would it help developing countries to fulfil their duties on the right to health? A South African perspective. J Law Med Ethics 2010;38(3):640-646.

24. Caney S. Justice beyond borders. London: Oxford University Press, 2005:4.

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RESEARCH

Public health, beneficence and cosmopolitan justice L Horn, MB ChB, DTM&H, DCH(SA), MPhil (Applied Ethics), Diploma: International Research Ethics, PhD Centre for Applied Ethics, Department of Philosophy and Division for Research Development, Stellenbosch University, South Africa Corresponding author: L Horn (lhorn@sun.ac.za)

This article proposes that, in line with moral-cosmopolitan theorists, affluent nations have an obligation, founded in justice and not merely altruism or beneficence, to share the responsibility of the burden of public health implementation in low-income contexts. The current Ebola epidemic highlights the fact that countries with under-developed health systems and limited resources cannot cope with a significant and sudden health threat. The link between burden of disease, adverse factors in the social environment and poverty is well established and confirmed by the 2008 World Health Organization (WHO)’s Social Determinants of Health Commission report. Well-resourced nations generally consider that they have some humanitarian obligation to assist where possible, but this obligation is limited. The following questions are considered: Is reliance on the principle of beneficence to address the global disparities in the social determinants of health and life expectancy at birth good enough? Do well-resourced nations have some obligation from justice, which is stronger than from beneficence, and which cannot be as easily cast aside or diminished, to address these issues? In a globalised world, shaped by centuries of historical injustice and where first-world economies are now so intertwined and reliant on third-world labour, beneficence is not a strong enough principle on which to base an obligation to achieve the WHO vision of ‘health equity through action on the social determinants of health’.

S Afr J BL 2015:8(2):30-33. DOI:10.7196/SAJBL.436

It is proposed that, in line with moral-cosmopolitan theorists, affluent nations have an obligation, founded in justice and not merely altruism or beneficence, to share the responsibility of the burden of public health implementation in low-income contexts. This view is controversial with little agreement in recent debate. The current ebola epidemic highlights the fact that countries with under-developed health systems and limited resources cannot cope with a significant and sudden health threat. The Western world has come under severe criticism for a delayed and inadequate response, only taking the situation seriously when the threat of the epidemic came close to home, and a US doctor who had been working in West Africa returned to New York and rode the subway before becoming symptomatic.[1] Responding to the Ebola outbreak, it has been argued that high-income countries have an obligation to address this, first motivated from beneficence, and then from justice.[2] A comment on the results of the Wellcome Trust funded INDEPTH network project, suggested that a reason that West African countries have been so badly affected by Ebola, is that because of relatively low HIV incidence, they have not benefited from health systems development linked to the HIV epidemic.[3,4] The HIV epidemic resulted in programmes such as the US President’s Emergency Fund for AIDS Relief (PEPFAR) and the Bill and Melinda Gates Foundation providing financial resources to bolster local health systems to curb the HIV epidemic. HIV mortality rates are dropping in countries benefiting from these resources and antiretroviral therapy (ART) treatment programmes, where these have become widely available.[5] However, health systems in the three impoverished countries that have borne the brunt of the recent Ebola epidemic, Liberia, Sierra Leone and Guinea, have buckled under the pressure. Their prolonged civil wars have aggravated the situation and undermined their ability to repair and further develop effective public health infrastructure.

Senegal was one West African country that successfully curtailed the Ebola epidemic and prevented Ebola from spreading. Senegal

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confirmed one case of Ebola on the 29 August 2014, and immediately launched a nationwide well-coordinated public health campaign using mobile phones and text messages (SMS) to spread information and prevention messages. The WHO reported that an important reason for Senegal’s effective response was because the infrastructure was already in place in the form of the Mobile-Diabetes (mDiabetes) campaign that was launched in June 2014. This project is part of a joint global initiative between the WHO and the International Telecommunication Union (ITU), called Be He@lthy Be Mobile,[6] which requires in-country financial and leadership commitment but has significant international partner support.[7] The link between burden of disease, adverse social environment factors and poverty is well established and confirmed by the 2008 WHO’s Social Determinants of Health Commission report.[8] This link is also discussed in a book chapter ‘The State of Global Health in a Radically Unequal World: Patterns and Prospects’,[9] which concludes that ‘the success stories cited … depended on effective and sustained mobilisation of financial and other resources both domestically and internationally. However, apprehension has also been expressed about the future availability of resources to continue these initiatives with one US commentator referring to ARV as a ‘ballooning entitlement burden’.[9,10] The same can be said about the above examples. Parallels have been drawn between Ebola and HIV, two examples of burden of disease prevalent in the developing world that are aggravated by economic disadvantage and require significant financial resources to control. The negative synergistic link between tuberculosis (TB) and diabetes is also an example of a burden-of-disease pair prevalent in the developing world.[11,12] Globalised world economies are extensively linked and interdependent on each other, even if nationalism is seen to be an increasingly important force. However, globalisation has not reduced poverty and global inequality has worsened since the end of the

RESEARCH cold war. Wealthy countries outsource material production to places where the labour is cheap and safety and environmental hazards rules are lax. Multinational companies based in well-resourced nations also play a role in maintaining power imbalances between rich and poor nations.[13] These power imbalances perpetuate the ‘systematic patterns of disadvantage’ that result in the perpetuation of inequalities in the social determinants of health, or the ‘dimensions of well-being’ identified as essential for adequate public health.[14]

Beneficence versus justice in the context of public health Successes over the last decade regarding HIV have largely been driven by financial support by Western nations, particularly the USA. Commentators generally agree that their motivation is primarily humanitarian, with efforts based on the principle of beneficence or altruism. Much funding, e.g. for HIV research, has come from charitable foundations like the Bill and Melinda Gates Foundation. Beauchamp and Childress[15] describe beneficence as a positive duty with incomplete obligation. It is also an obligation that can be fulfilled with some degree of partiality. ‘Virtually everyone agrees that all persons are obligated to act in certain circumstances in the interests of their children, friends and other special parties but general beneficence is more controversial’. They further state that the idea that we have ‘the same impartial obligations to persons we do not know as to our own family … is also perilous because this unrealistic and alien standard may divert attention from our obligations to those to whom we are close or indebted, and to whom our responsibilities are clear rather than clouded’. Singer[16] has also discussed the concept of beneficence within the context of famine and poverty and put some limits on it. He differentiates from ‘doing good’ and ‘preventing harm’ and argues that if we can prevent something bad from happening, no matter where in the world, ‘without thereby sacrificing anything of comparable moral importance, we ought, morally to do it’. Therefore we have a humanitarian obligation to assist where we can, but this obligation is limited. Questions to consider are: Is reliance on the principle of beneficence to address the global disparities in the social determinants of health and life expectancy at birth (LEB) good enough? Do wellresourced nations have some obligation from justice, which is stronger than an obligation from beneficence, and which cannot be as easily cast aside or diminished, to address these issues? For example, even when changing economic or political circumstances come into prominent focus at a national level and shift perceptions of what counts as things of ‘comparable moral importance’.

Cosmopolitan justice and public health[17] Discussions of distributive justice do seem to be based on the assumption that the principles expounded belong in a ‘bounded society’ and that their application is ‘a primary task of states’.[18] That is, obligations determined by principles of distributive justice are confined to within the borders of states, and do not apply globally.

However, much argument and debate counteracts this assumption and argues that there are cosmopolitan principles of justice that apply globally and place cross-border obligations and duties on states.[19, 20] ‘Cosmopolitanism’ can be applied to many things such as ‘schemes of world political order and conceptions of individual cultural identity’, hence Beitz refers specifically to ‘moral cosmopolitanism’ when using the term in the context of a discussion of global justice.[17,21]

‘Moral cosmopolitanism’ is an approach to issues of global justice that has many different versions and continues to be the focus and subject of much current debate. However, three key principles common to most cosmopolitan approaches have been proposed: • The value of individuals (no matter where they live in the world) • The equality of individuals (no matter where they live in the world) • Obligations of duty that apply to everyone, not just to my fellow citizens or community, my own ethnic group or religious community.[17,19] These principles are broadly reflected by the WHO Social Determinants of Health report,[7] even if not explicitly stated. People in a modern liberal democracy generally accept the first two principles. The third principle is more controversial. Therefore, from a perspective of cosmopolitan justice, public health problems, especially those caused by poverty and ‘entrenched patterns of systematic disadvantage’[14] in poor countries, are not only the responsibility of the government or institutions of that country but are also, under an obligation of justice, the responsibility of affluent nations.

‘Three elements are shared by all cosmopolitan positions. First, individualism: the ultimate units of concern are human beings, or persons – rather than, say, family lines, tribes, ethnic, cultural, or religious communities, nations or states. The latter may be units of concern only indirectly, in virtue of their individual members or citizens. Second, universality: the status of ultimate unit of concern attaches to every living human being equally – not merely to some sub-set, such as men, aristocrats, Aryans, whites or Muslims. Third, generality: this special status has global force. Persons are ultimate units of concern for everyone – not only for their compatriots, fellow religionists, or such like.’[17,19,22] The world faces numerous urgent global problems that involve matters related to justice[21] among which inequities in the social determinants of health must rank high.

Beitz’s[23] ‘Political Theory and International Relations’ was one of the first major contributions to the development of a concept of cosmopolitan justice. He produces two central arguments against Rawls,[24] one of the most influential political philosophers of the twentieth century. Beitz argues that Rawls’ assumption that states are self-sufficient and operate independently is false. Globally, economies are so interdependent that this creates a moral obliga­ tion of distributive justice. Second, distribution of the world’s natural re­sour­ces is as arbitrary as the distribution of ‘talents’ when considered from the standpoint of a global ‘original position’. Thus, Beitz argues, a global version of Rawls’ ‘difference principle’ is required. Rawl’s difference principle states in essence that the basic goods of society should be distributed equally unless an unequal distribution is to the advantage of the ‘least advantaged group’. The purpose of this principle is to compensate for life’s lottery, which sees some being born into severe poverty with limited talents and others getting the best start in life (natural talent and intellect or affluent home circumstances), through no effort of their own. He proposes a global resource redistribution principle which would mean that countries that have fared very well in the distribution of natural resources must compensate those who have fared poorly; namely, this principle would function at an international level in the same way as the difference principle functions at a domestic level.[23] Many scholars have joined Beitz in supporting and expanding these arguments. Pogge[20,22,25] argues that affluent societies have a

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RESEARCH negative duty not to harm those in poor societies and that for many reasons, particularly colonialism and exploitative global economic policies; they are responsible for having done just that. Pogge[25] sets out an argument based in part on Locke’s[26] ‘inalienable right to a portion of the world’s resources or an adequate equivalent’ in support of a ‘small change in international property rights’ which he calls a Global Resource Dividend, specifically for poverty reduction. At 1% of global social product this would raise an amount 86 times more than what well-off countries currently spend on ‘basic social services’ in low-income countries.[25] While these scholars of cosmopolitan justice may differ in many respects they all hold in common the three identified core principles.

Some political theorists or philosophers in social justice do not support the third principle, namely, that the duty of justice owed to fellow citizens is no greater than that owed to individuals living in far corners of the world. Miller[27] addresses this issue in ‘National Responsibility and Global Justice’. He states that many of us have two conflicting intuitions. The first is that the enormous differences in per capita income, burden of disease and life expectancy between the first world and developing-world countries is unjust. The second is that in matters of justice national responsibility must take precedence and hence such inequality is inevitable. He proposes a compromise between cosmopolitanism and national justice but argues that ‘we should treat national responsibility for outcomes as the norm rather than the exception’.[27] Ghana and Malaysia, who obtained independence from Britain in 1975, are cited to illustrate that poor domestic governance and choices have resulted in Malaysia being far better-off than Ghana.[27] Poor governance and corrupt governance adversely affect the social determinants of health in many developing-world countries; and the sorry state of their populations’ health status would not be such if their governments were more interested in service than power, which Pogge concedes.[25] However, those in government often do not suffer but rather those living in impoverished or vulnerable communities with little influence over national policy. Pogge[25] makes the point that powerful countries often shape the regimes in weak countries because they recognise such leaders, and do not question their power or authority to sell their countries’ natural resources, borrow internationally and then entrench patterns of power, elitism and cronyism in their countries. He argues that there is a negative synergism between global economics and unjust national policies and governments and that the effect of this interaction is multiplicative.

I therefore disagree with Miller who believes that collective responsibility operates in both democracies and authoritarian states.

The HIV epidemic in South Africa (SA) is a case in point. SA has one of the worst HIV epidemics globally with many contributing factors. The HIV denialism by the then-president (Thabo Mbeki) and Minister of Health (Manto Tshabalala-Msimang) contributed to this situation, but the colonial and apartheid past also contributed to the underlying structures that allowed the epidemic to spiral out of control. The historically disadvantaged and most vulnerable members of the population bore the brunt of this epidemic. Many in SA would agree that it was only with international intervention, such as the PEPFAR programme, that the situation started to turn around.

Since 2008 the world has been affected by a global recession and the arguments of those supporting a cosmopolitan approach to social justice have become less attractive. Western democracies tend

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to turn inwards and focus more on domestic priorities rather than the public health concerns of developing countries. If the principle of beneficence underpins the development of, and support for, global health programmes – these can more easily be set aside. For example, the dramatic budget cut of USD214 million that President Obama has made to HIV funding programmes in 2013, which is having a negative impact on successful PEPFAR – funded programmes in SA.[28-31]

Conclusion The link between public health and social justice should be closely established and an essentialist conception of social justice can provide a foundation for public health programmes.[32] In agreement with cosmopolitan theorists I believe well-resourced countries have an obligation founded on justice, not merely on altruism or beneficence, to assist developing-world countries to recognise and accept the demands such an approach to public health would make.

Furthermore these countries must accept some co-responsibility and accountability, based on justice, in meeting these demands. I do not suggest that well-resourced countries should accept this entire burden, or that developing-world countries do not have a major role to play in developing and funding appropriate public health projects in their own country. Instead I argue for the principle that beneficence alone is not good enough as a motivating force for support of public health in developing-world countries. This would mean some acceptance of the notion of justice within the arena of global public health as a point of departure. It may require, as Pogge has suggested, major reordering of global economic systems and an acknowledgement that our world and humanity is far more interconnected, historically and currently, than we sometimes like to believe. We are a long way off reaching any form of agreement on what shape justice, as a global health principle, should take.

This paper focuses on global responsibility for the social deter­ minants of health worldwide, and the justice imperative that involves well-resourced states in the development and support of public health programmes that extend beyond national borders. Public health, which is concerned with the health of populations and communities rather than individuals, and delivered mainly by governments and other organisations rather than individual healthcare service providers, is where these obligations must be addressed and where it can make the biggest positive impact. Nonetheless, the borders between public health and health service delivery are often blurred and there may be little purpose in attempting to separate out the two domains, because the same underlying negative social determinants of health promote illness that require the delivery of therapeutic health services at an individual level. Therefore, these arguments may also be appropriate for health service delivery in certain contexts, e.g. the provision of ART and TB treatment in countries, such as SA, experiencing overwhelming epidemics. This may similarly apply to African and Asian countries with severe malaria epidemics and more recently, the Ebola epidemic.

References 1. Gonsalves G, Statley P. Panic, paranoia and public health – the AIDS epidemic’s lessons for Ebola. N Engl J Med 2014;371(25)2348-2349. [http://dx.doi.org/10.

1056NEJMp1413425] 2. Rid A, Emmanuel EJ. Why should high-income countries help combat Ebola?

JAMA 2014;312(13):1297-1298. [http://dx.doi.org/10.1001/jama.2014.12869]

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4. Boerma T. Moving towards better cause of death registration in Africa and Asia.

Glob Health Action 2014;10(7):25931 [http://dx.doi.org/10.3402/gha.v7.25931] 5. Streatfield PK, Khan WA, Bhuiya A, et al. HIV/AIDS-related mortality in Africa and Asia: Evidence from INDEPTH health and demographic surveillance system sites.

Glob Health Action 2014;10(7):25370 [http://dx.doi.org/10.3402/gha.v7.25370] 6. International Telecommunications Union (ITU). Be He@lthy. Be Mobile. Geneva: ITU, 2014. http://www.itu.int/en/ITU-D/ICT--Applications/eHEALTH/Be_healthy/ Pages/Countries.aspx (accessed 24 November 2014).

7. World Health Organization. Government of Senegal boosts awareness through SMS campaign. Geneva: World Health Organisation, 2014. http://www.who.int/ features/2014/senegal-ebola-sms/en/ (accessed 20 November 2014).

8. World Health Organization. Commission on Social Determinants of Health Report 2008. Closing the Gap in a Generation: Health Equity through Action. Geneva: World Health Organisation, 2008 http://www.who.int/social_determinants/ thecommission/finalreport/en/ (accessed 26 February 2014).

9. Labonté R, Schrecker T. The state of global health in a radically unequal world: Patterns and prospects. In: Benatar S, Brock G, eds. Global Health and Global Health Ethics. Cambridge: Cambridge University Press, 2011:24-36.

10. Over M. Prevention failure: The ballooning entitlement burden of US global AIDS treatment spending and what to do about it. Center for Global Development Working Paper 144, 2008.

11. Times Live. New Global Health Threat. Johannesburg: Times Live, 31 October 2014. http://www.timeslive.co.za/thetimes/2014/10/31/new-global-health-threat (accessed 20 November2014).

12. International Diabetes Federation. Diabetes and Tubersulosis. Brussels: International Diabetes Federation, 2014. http://www.idf.org/print/ diabetesatlas/5e/diabetes-and-tubersulosis (accessed 7November2014).

13. Birn AE. Addressing the societal determinants of health: The key global health imperative of our times. In: Benatar S, Brock G, eds. Global Health and Global Health Ethics. Cambridge: Cambridge University Press, 2011:37-52.

14. Powers M, Faden R. Social Justice: The Moral Foundations of Public Health and Health Policy. Oxford: Oxford University Press, 2006:9.

15. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. Fifth ed. New York: Oxford University Press, 2001:169.

16. Singer P. Famine, affluence and morality. Philosophy & Public Affairs 1972;1(3):229-243.

17. Horn LM. Virtue ethics in the development of a framework for public health. 2010.

PhD thesis. Stellenbosch: Stellenbosch University, 2010:22-30. http://scholar.sun. ac.za/handle/10019.1/5418.

18. O’Neill O. Bounded and cosmopolitan justice. Review of International Studies 2000;26(5):45-60. [http://dx.doi.org/10.1017/S0260210500000450] 19. Caney S. Justice Beyond Borders. Oxford: Oxford University Press, 2005:4.

20. Pogge TW. World Poverty and Human Rights: Cosmopolitan Responsibilities and Reforms. Cambridge: Polity Press, 2002:7-123.

21. Beitz CR. Cosmopolitanism and global justice. In: Current Debates in Global Justice. Netherlands: Springer, 2005:11-27. [http://dx.doi.org/10.1007/1-40203847-X_2] 22. Pogge TW. Cosmopolitanism and Sovereignty. In: Political Restructuring in Europe: Ethical Perspectives, Brown C, eds. London: Routledge, 1994:89-122.

23. Beitz CR. Justice and international relations. Philosophy & Public Affairs 1975;4(4):360-389.

24. Rawls J. A Theory of Justice. USA: Oxford University Press, 1999.

25. Pogge TW. Real world justice. The Journal of Ethics 2005;9:29-53.

26. Locke J. Two treatises of civil government (1690). In: Wootten D, ed. Locke, Political Writings. London: Penguin,1993:29.

27. Miller D. National responsibility and global justice. Critical Review of International Social and Political Philosophy 2008;11(4):383-399.

28. USA.gov. The United States President’s Emergency Plan for Aids Relief.

Washington: USA.gov, 2014 http://www.pepfar.gov/ (accessed 26 February 2014).

29. United States Diplomatic Mission to South Africa. 10 Years of PEPFAR: The Power of Partnership. Washington: United States Diplomatic Mission to South Africa, 2014. http://southafrica.usembassy.gov/pepfar.html (accessed 26 February 2014).

30. Aids Health Foundation. South Africa: 1000 protest U.S AIDS funding cuts. Los Angeles: Aids Health Foundation, 18 March 2013. http://www.aidshealth.org/ archives/1591 (accessed 25 February, 2014).

31. Aids Health Foundation. Obama budget decimates global aids funding. Los Angeles: Aids Health Foundation, 2013. http://www.aidshealth.org/archives/ news/obama-budget-decimates-global-aids-funding (accessed 25 February 2014).

32. Horn LM. Public health and social justice: Forging the links. S Afr J BL 2015;8(2):2629. [http://dx.doi.org/10/7196/SAJBL.437]

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Stransham-Ford v. Minister of Justice and Correctional Services and Others: Can active voluntary euthanasia and doctor-assisted suicide be legally justified and are they consistent with the biomedical ethical principles? Some suggested guidelines for doctors to consider D J McQuoid-Mason, BComm LLB, LLM, PhD David McQuoid-Mason is Professor of Law at the Centre for Socio-Legal Studies, University of KwaZulu-Natal, Durban, and publishes and teaches in medical law Corresponding author: D J McQuoid-Mason (mcquoidm@ukzn.ac.za)

The recent case of Stransham-Ford v. Minister of Justice and Correctional Services and Others held that voluntary active euthanasia and doctor-assisted suicide may be legally justified in certain circumstances. The court observed that the distinction between ‘active’ and ‘passive’ voluntary euthanasia is not legally tenable as, in both instances, the doctors concerned have the ‘actual’ or ‘eventual’ intention to terminate the patient’s life and have caused or hastened the patient’s death. It is argued that as the South African Constitution is the supreme law of the country, the fundamental rights of patients guaranteed in the Constitution cannot be undermined by ethical duties imposed on healthcare practitioners by international and national professional bodies. The court in the Stransham-Ford case did not use ethical theories and principles to decide the matter. It simply applied the values in the Constitution and the provisions of the Bill of Rights. However, in order to assist medical practitioners with practical guidelines with which many of them are familiar – rather than complicated unfamiliar philosophical arguments – the biomedical ethical principles of patient autonomy, beneficence, non-maleficence and justice or fairness are applied to active voluntary euthanasia and doctor-assisted suicide in the context of the Stransham-Ford case. Although the case has not set a precedent or opened the floodgates to doctor-assisted voluntary active euthanasia and it is open to Parliament, the Constitutional Court or other courts to develop the concept or outlaw it, some guidelines are offered for doctors to consider should they be authorised by a court to assist with voluntary active euthanasia.

S Afr J BL. 2015;8(2):34-40. DOI:10.7196/SAJBL. 446

This article is intended to enable medical practitioners to understand the reasons for the judgement in the recent Stransham-Ford v. the Minister of Justice and Correctional Services and Others[1] case in which the North Gauteng High Court granted an order stating that a terminally ill patient who was ‘suffering intractably’ was entitled to commit suicide with the assistance of his doctor and that the doctor’s conduct would not be unlawful or sub­ject to disciplinary action by the Health Professions Council of South Africa (HPCSA). The court avoided discussing ethical issues and based its decision solely on the values and the bill of rights in the Constitution.

However, the biomedical ethical principles[2] are a useful tool to assist doctors in deciding whether or not they will be acting ethically if they assist patients in their end-of-life decisions where such patients have obtained a court order authorising such conduct.

The biomedical ethical principles of patient autonomy, beneficence, non-maleficence and justice or fairness[2] have been used – because in the writer’s experience of conducting numerous medical law and ethics continuing professional development workshops – they are the ethical principles with which most doctors are familiar. For the purposes of this paper the biomedical principles themselves have not been interrogated.

They are presented in an easily digestible form to provide doctors with clear and concise ethical guidelines. This paper is not aimed at legal

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philosophers and ethicists, and it is not intended to overwhelm medical practitioners by exposing them to the debates on euthanasia of legal philosophers and ethicists, such as Hart,[3] Dworkin,[4] Singer[5] and others.

The court in the Stransham-Ford case stated that its decision was limited to the circumstances before it and was not a general rule. Parliament, the Constitutional Court or ‘future courts’ would have to decide whether to provide guidance in a general rule or to outlaw the practice altogether.

The court made it clear that its decision was not a precedent for opening the floodgates to active voluntary euthanasia because each case would have to be considered on its merits by the relevant court.[1] As it was a judgment by a single high court judge the decision is not binding on any courts in the country, although it may be of persuasive value.[6] However, at the end of this paper some practical and ethical guidelines are offered for consideration by doctors that have been authorised by a court to assist a patient with voluntary active euthanasia.

In order to decide whether doctor-assisted suicide and voluntary doctor-assisted death can be legally justified in terms of the Constitution,[7] and in terms of the biomedical ethical principles[2] in the context of the Stransham-Ford case, it is necessary to consider: • The facts of the Stransham-Ford case • The relevant constitutional provisions and their relationship to the biomedical ethical principles

RESEARCH • • • • • • • •

The meaning of ‘euthanasia’ The meaning of ‘intention’ and ‘motive’ in euthanasia cases The meaning of ‘causation’ in euthanasia cases The test for ‘unlawfulness’ in euthanasia cases The false distinction between ‘passive’ and ‘active’ euthanasia ‘Doctor-assisted suicide’ v. ‘doctor-assisted death’ The application of the biomedical ethical principles to the case Suggested guidelines for doctors contemplating assisting patients with voluntary active euthanasia when authorised by a court order.

The facts of the Stransham-Ford case In Stransham-Ford v. Minister of Justice and Correctional Services[1] the applicant was a highly qualified lawyer who had contracted terminal stage 4 cancer which had spread to his lower spine, kidneys and lymph nodes. He suffered from severe pain, nausea, vomiting, stomach cramps, constipation, disorientation, weight loss, loss of appetite, high blood pressure, increased weakness and frailty related to the kidney metastasis. He was unable to get out of bed and had injections and drips, endured anxiety, could not sleep without morphine or other painkillers, and when he used pain medication it made him somnolent. He had tried a number of traditional and other forms of medication as well as palliative care but none of these alleviated his suffering. He had only a few weeks left to live and died of natural causes just before the judge made his order.[1] The court was satisfied that the applicant was ‘mentally competent’ and had ‘freely and voluntarily and without undue influence, requested [it] to authorise that he be assisted in an act of suicide’.[1] In addition he was ‘terminally ill and suffering intractably and had a severely curtailed life expectancy of some weeks only’.[1] The court issued an order stating that if Mr Stransham-Ford was assisted to die by a doctor who provided or administered a lethal drug to him the doctor would not be acting unlawfully, and not be subject to prosecution or subject to disciplinary proceedings by the HPCSA.[1] The court order stated that the applicant could be assisted by a qualified doctor, but no doctor was obliged to assist him to commit suicide.[1] The court did not find it necessary to use the proposals in the Draft Bill on End of Life in the 1998 Law Commission Report[8] ‘as the necessary or only conditions for the lawful assistance of a qualified medical doctor to commit suicide’.[1] The court reiterated that where the South African common law is in conflict with the Constitution[7] the common law must be developed by the courts to bring it into line with the Constitution. The court concluded that the common law crimes of murder or culpable homicide in the context of assisted suicide by medical practitioners unjustifiably limited the patient’s constitutional rights to human dignity (section 10) and freedom and security of the person (section 12), and were ‘overbroad’ and unconstitutional.[1] However, apart from the recognition of voluntary active euthanasia in the context of the Stransham-Ford case, the common law crimes of murder and culpable homicide were not affected by the judgment.[1]

The relevant constitutional provisions The Constitution[7] is the supreme law of South Africa (SA) (section 2) and any laws or conduct in the country must conform to the Constitution.

It is submitted that this means that although patients in SA can be granted rights in excess of those in the Constitution by professional

ethical rules, they may not have their constitutional rights reduced unless it is reasonable and justifiable (section 36(1)).

A court ‘must declare any law or conduct that is inconsistent with the Constitution … invalid to the extent of its inconsistency’ (section 172(1)(a)). It is self-evident that the words ‘laws or conduct’ will include the ethical rules of the different professions, including those of the medical profession. For instance, the HPCSA’s rules are referred to as ‘ethical rules of conduct for practitioners registered under the Health Professions Act’.[9] The HPCSA may impose a duty on doctors to provide greater protection for patients than the Constitution, for instance, as it does in the duty to respect the confidentiality of patients after death.[10] The HPCSA may not, however, impose a duty on doctors that limits the constitutional rights of patients, such as the rights to dignity (section 10) and freedom and security of the person (section 12); unless the HPCSA can show that the limitation is reasonable and justifiable (section 36(1)).

The Constitutional Court, the Supreme Court of Appeal and the High Courts have the ‘inherent power’ to ‘develop the [South African] common law in line with the Constitution,[7] taking into account the interests of justice’ (section 173), and ‘may consider foreign law’ in this respect (section 30(1)(c)). It is in this context that the judge in the Stransham-Ford case interpreted the Constitution, and referred to a recent similar Canadian Supreme Court case[11] that had authorised doctor assisted suicide. Accordingly, the court in the StranshamFord case ordered that the applicant could be actively assisted to die by a doctor without the latter being subjected to prosecution or professional disciplinary proceedings.[1]

Constitutional values and the biomedical ethical principles The South African Constitution[7] includes a bill of rights which sets out the fundamental rights and freedoms to which everyone in SA is entitled. The Constitution is founded on the values of ‘human dignity, the achievement of equality and the advancement of human rights and freedoms’ (section 1(a)). The bill of rights in the Constitution provides that everyone has the right to: • ‘Inherent dignity’ and ‘to have their dignity respected and protected’ (section 10) • The right to life (section 11) • Freedom and security of the person, which includes ‘the right not to be treated or punished in a cruel, inhuman or degrading way’ (section 12(1)(e)) • Bodily and psychological integrity, which includes the right ‘to security and control over their body’ (section 12(2)(b)) • The right to privacy (section 14).

All of these rights, including the right to life – which refers to a right to life and not a right to mere ‘existence’[12] – are linked to dignity.[6] The Constitution protects the right to life, but not the right to an ‘existence’ that undermines a person’s right to dignity.[1,12] These provisions are consistent with the biomedical ethical principles of patient autonomy, beneficence, non-maleficence and justice or fairness.[2] As previously mentioned, the court in the Stransham-Ford case did not base its judgment on ethical principles. However, aspects of the biomedical ethical principles[2] are consistent with the Constitution,[7] and may be of practical value to medical practitioners faced with

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RESEARCH situations similar to that in the Stransham-Ford case. For instance, the right to autonomy[12] can be found in the sections in the Constitution dealing with the right to freedom and security of the person (section 12) which – except in very limited situations - requires doctors to obtain an informed consent before treating patients.

The requirement of an informed consent is also to be found in the National Health Act[13] (section 7(1)) and the South African common law.[14] Likewise, except in very restricted cases, the right to privacy (section 14) requires doctors to preserve the confidences of their patients. This requirement is also found in the National Health Act (section 14(1)) and the common law.[15] The ethical principle of beneficence or the obligation on doctors and healthcare practitioners to contribute to the welfare of their patients[2] is found in the sections dealing with the right to basic healthcare services for children (section 28(1)(c)) and the right of access to healthcare services for adults (section 27(1)). These provisions are also to be found in the objects of the National Health Act[13] (section 2 (c)) which is designed to take into account the obligations imposed by the Constitution (Preamble). Conversely, the ethical principle of non-maleficence or obligation not to harm patients[2] is to be found in the sections providing that nobody may be refused emergency medical treatment (section 27(3)), and the right to an environment that is not harmful to their health or wellbeing (section 24(1). The National Health Act[13] also provides that nobody may be refused emergency medical treatment (section 5) and acknowledges that the people of SA are entitled to an environment that is not harmful to their health or wellbeing (section 2(c)(ii)). The ethical principle of justice or fairness[2] is to be found in the sections of the Constitution that provide everyone with the right to ‘full and equal enjoyment of all the rights and freedoms’ (section 9(2)) and the right not to be unfairly discriminated against (sections 9(3) and (4)).

The objectives of the National Health Act[13] are to protect, respect, promote and fulfil the constitutional health rights of the people of SA (section 2(c)), and to ensure the equitable provision of healthcare services in the country within available resources (section 2(b)(ii)).

In short, medical practitioners who use the biomedical ethical principles in their decision-making and treatment of patients will be generally acting in conformity with the Constitution, the National Health Act and the SA common law.

Application of the Constitution to the StranshamFord case As previously mentioned, the court in the Stransham-Ford case deci­ ded the case without recourse to any ethical principles and solely on its interpretation of the values in the Constitution and the provisions of the Bill of Rights. The court considered the constitutional rights to dignity (section 10) and freedom and security of the person (section 12) in particular detail, and observed that the right to dignity and life (section 11) were ‘intertwined’.[1] The court also mentioned that the Constitutional Court had observed that the ‘right to life is more than existence’,[12] and the right to dignity ‘informs the interpretation of possibly all other fundamental rights’.[16] The court agreed with Mr Stransham-Ford that ‘there is no dignity’ in ‘having severe pain all over one’s body; being dulled with opioid medication; being unaware of your surroundings and loved ones; being confused and dissociative; being unable to care for one’s own hygiene; dying in a hospital or hospice away from the familiarity of one’s own home; and dying at

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any moment, in a dissociative state unaware of one’s loved ones being there to say goodbye’.[1] The court stated that in deciding such cases the test for whether a person’s dignity is being violated is subjective – not objective.[1] In the end the court said that it ‘must give effect to where [South African] common law does not provide for the given situation [that of Mr Stransham-Ford], and in effect, totally negates the rights that every human being is entitled to’.[1] The court was satisfied that a sufficient case had been made by Mr Stransham-Ford to prove that ‘assisted dying was the only way that he would be released from his eventual unbearable suffering and for him to prevent the imminent intolerable and undignified suffering that was to occur in the future’.[1] The court was careful to respect the constitutional right of doctors to freedom of conscience, religion, belief, thought and opinion (section 15(1)) and stated that no doctor was obliged to assist Mr Stransham-Ford to commit suicide.[1]

The meaning of ‘euthanasia’ The dictionary definitions of ‘euthanasia’ have remained reasonably constant over the years. The Oxford English Dictionary defines ‘euthanasia’ as ‘a gentle and easy death’ or ‘the means of bringing about a gentle and easy death’ or ‘the action of inducing a gentle and easy death.[17] Another non-medical dictionary meaning of ‘euthanasia’ is the ‘bringing about a mercifully easy and painless death for persons suffering from an incurable and painful disease’.[18] No distinction is made between so-called ‘passive’ or ‘active’ euthanasia in English language dictionaries, and medical dictionaries indicate that euthanasia might be either. Therefore ‘euthanasia’ has been defined as ‘deliberately taking of somebody’s life when continued existence would mean only further suffering’.[19] However, ‘[ethical] and legal questions arise when a patient is allowed to die through the withholding of treatment, or when there is a question over the definition of “life” in relation to the person’.[19] Euthanasia has also been defined as: ‘The act or practice of ending the life of an individual suffering from a terminal illness or an incurable condition, as by lethal injection or the suspension of extraordinary medical treatment’.[20] In the medical sense ‘euthanasia’ refers to situations where doctors hasten the death of a patient by prescribing or administering a particular medicine or agent or by withholding or withdrawing treatment. As this article is concerned with voluntary active euthanasia and doctorassisted suicide, it is not necessary to consider the other categories of euthanasia.[21] As mentioned, the court in the Stransham-Ford case did not dwell on the philosophical distinctions between ‘passive’ and ‘active’ euthanasia, and based its judgment solely on the common law and the values and provisions in the Constitution.[1] The concepts of ‘passive’ and ‘active’ euthanasia were, however, discussed in passing by the court and will be considered later. Beforehand, however, it is necessary to consider the legal meanings of ‘intention’ and ‘motive’, ‘causation’ and ‘lawfulness’ in the context of euthanasia.

The meanings of ‘intention’ and ‘motive’ In law intention may be ‘actual’ or ‘eventual’. ‘Actual intention’ occurs where perpetrators direct their will to kill a particular person knowing that their act is unlawful. In the past such conduct has been held to be unlawful.[22] ‘Eventual intention’ occurs where perpetrators subjectively foresee that their conduct or omission may cause the death or injury of another person and reconcile themselves with this

RESEARCH possibility (dolus eventualis).[1] The latter occurs, for instance, where doctors withhold or withdraw treatment or prescribe or administer palliative drugs and subjectively foresee that their conduct will hasten the patient’s death, and reconcile themselves with this possibility. The doctors have the ‘eventual intention’ to hasten the patient’s death,[1] but such conduct is lawful and does not require a court order unless it is opposed by somebody on behalf of the patient.[12] According to the law ‘motive’ must be distinguished from ‘intention’.

‘Motive’ is the reason behind the intention – and a ‘good motive’ will not cure an unlawful act or omission,[23] but may reduce a sentence in a criminal case[2] (for instance in cases of voluntary active euthanasia).[22] Therefore, under the SA common law, in ‘active’ eutha­nasia cases where the accused had a good motive, the courts tended to impose much lighter sentences than usual, although the professional consequences may still be severe.[22] Conversely, a bad motive may make an otherwise lawful act or omission unlawful, e.g. where a person is arrested by the police out of spite or malice.[24] This may occur, for instance, if in a ‘passive’ euthanasia case the sole motive for withdrawing treatment is to allow the person ordering such withdrawal to inherit from the patient’s deceased estate, rather than to alleviate the patient’s pain and suffering. Such conduct may be unlawful, although it will depend on the particular circumstances.

The meaning of ‘causation’ Causation is an essential element in crimes or civil wrongs. In the case of murder or culpable homicide ‘causation’ refers to an act or omission that causes or accelerates the death of another person.[25] Any person who contributes to the death of another person will be regarded as having caused the death of the person.[26] Where a doctor’s act is the sole cause of a patient’s death by administering a fatal dose of medication which pre-empts the underlying illness or injury killing the patient, ‘causation’ is clear.[26] Where more than one event contributes to the death of a person, the event that finally hastens the death is regarded as its cause.[26] A good example of how causation is present in ‘passive’ euthanasia cases is to consider the situation of a person who is bleeding to death.

If treatment to prevent the bleeding is withheld and the patient dies, it cannot be argued that the bleeding caused the death of the patient and not the withholding of the treatment, which hastened the death.

Likewise, if treatment to prevent the bleeding is withdrawn and the patient dies – it cannot be argued that the bleeding caused the death of the patient and not the withdrawal of treatment. In both instances, the failure to prevent the bleeding caused the death of the person.

Whether or not the withholding or withdrawal of treatment to prevent the bleeding was legally justified will depend upon whether or not it was lawful.

The principle of ‘double effect’ involves providing a patient with palliative care which simultaneously hastens the death of the patient.[27] The hastening of death in these situations is relevant to the question of causation. Where increasing doses of medication are administered with the motive of lessening pain and suffering with the result that they hasten the patient’s death, the increased dosages will be regarded as having ‘caused’ the death of the patient – even though the conduct of the person administering the dosages may not be considered unlawful. The reason is that the increased dosage has caused the patient to die sooner rather than later from the underlying illness or condition.[28]

The meaning of ‘unlawfulness’ The question of unlawfulness is often the litmus test of whether a doctor will be found guilty of murder or culpable homicide in situations where the deaths of patients have been caused by ‘pas­ sive’ or ‘active’ conduct on their part.[6] At common law, before the Constitution was enacted, the test for unlawfulness applied by the court in the Clarke case was based on the ‘legal convictions of the community’.[29] In Clarke’s case Dr Clarke had been in a persistent vegetative state for a period of four years from which there was no prospect of recovery. His wife applied for a court order enabling her to become her husband’s curatrix in order to authorise the withdrawal of treatment and nasogastric feeding. The court granted her application and stated that if she did authorise the withdrawal of treatment and feeding she would not be acting unlawfully. The court used the ‘legal convictions of the community’ in order to determine whether Mrs Clarke’s actions would be lawful or unlawful.[29] Since the advent of the Constitution, however, the courts have made it clear that the values of the Constitution – and not public opinion – should influence a court’s decision when dealing with the question of unlawfulness.[12] The court in the Stransham-Ford case approached human dignity as ‘a value and a right [and] … a categorical imperative’.[1] As previously stated, dignity is closely linked to the right to life to which it is ‘inextricably linked’.[1] The Constitutional Court has said that the right to life is not simply ‘the right to exist’[12] and must be ‘a life worth living’. [12] The right to life is ‘not life as mere organic matter’ but rather ‘the right to share in the experience of humanity’.[12] In the words of the Constitutional Court: ‘The right to life is more than existence, it is a right to be treated as a human being with dignity: without dignity, human life is substantially diminished’.[12] In Clarke’s case,[29] the court said that doctors should not seek to preserve life at any cost irrespective of quality, and authorised the withdrawal of treatment and artificial feeding from Dr Clarke because it would ‘not serve the purpose of supporting human life as it is commonly known’. Similarly, in the Stransham-Ford case the court stated that the right to life ‘cannot mean that an individual is obliged to live, no matter what the quality of his life is’.[1] This approach has also been adopted by the English courts,[30] and was applied in a situation where a ‘do not resuscitate’ order was granted after the court was satisfied that the patient’s life would be ‘so afflicted as to be intolerable’.[31]

The false distinction between ‘passive’ and ‘active’ euthanasia In the Stransham-Ford case the court indicated that there was ‘no logical or justifiable distinction between the withdrawal of lifesustaining or prolonging medical treatment and active voluntary euthanasia or assisted suicide’.[1] In both instances the objective was ‘to ensure the patient’s quality of life and dignity’, and the result in both was ‘death or the hastening of death’.[1] The withdrawal of treatment is a positive act – ‘it remains an active and positive step taken by medical staff directly causing the death of the patient (on a factual basis)’.[1] In cases of withholding of treatment it would ‘constitute an omission only’.[1] Once it is conceded that ‘a medical practitioner has a duty to recognise and ensure that a terminally ill patient’s dignity is protected by an omission or passive euthanasia, then, the same duty remains on a medical practitioner through a commission or active euthanasia’.[1]

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RESEARCH As previously mentioned, in ‘passive’ euthanasia cases doctors subjectively foresee and reconcile themselves to the fact that their withholding or withdrawal of treatment or increased use of certain medication will hasten the patient’s death, and therefore have the ‘eventual’ intention to hasten the death of the patient (dolus eventualis).[6] In ‘active’ euthanasia cases doctors who administer or prescribe lethal medication to patients direct their minds to hasten the death of the patient and have the ‘actual’ intention to hasten the death of the patients.[6] In both instances, the doctors have the intention to cause or hasten the death of their patients and have in fact caused or hastened their deaths.

‘Doctor-assisted suicide’ v. ‘doctorassisted death’ Although the terms ‘doctor-assisted suicide’ and ‘doctor-assisted death’ seem to be used interchangeably, for instance the Netherlands Termination of Life on Request and Assisted Suicide Act Termination of Life on Request and Assisted Suicide Act[32] does not distinguish between voluntary active euthanasia and assisted suicide. The dic­ tionary meaning of ‘suicide’ is ‘taking one’s own life’.[19] Therefore the term ‘doctor-assisted suicide’ technically means that doctors provide patients with the means to take their lives and patients use such means to end their lives. The doctors merely provide patients with the means, which is different from doctors actually using the means to end the lives of their patients. For instance, ‘physician-assisted suicide’ has been medically defined as ‘suicide by a patient facilitated by means or information (as a drug prescription or indication of the lethal dosage) provided by a physician who is aware of how the patient intends to use such means or information’.[37] However, legally, even though the doctor has merely prescribed and not administered the fatal agent, and the patient has taken his own life, the doctor is still regarded as having acted with ‘eventual’ intention and contributed to the patient’s death.[34] Where doctors have assisted patients to die by administering a fatal agent after a request by their patients, semantically such deaths may be better described as ‘doctor-assisted death’, and not ‘doctor-assisted suicide’. This is because such patients have not taken their own lives, the doctors have. The same applies where doctors withhold or withdraw treatment at the request of their patients, or administer increasing doses of a palliative drug to patients and the doctors and patients know that the drug will shorten the lives of the patients. According to the law, however, there is no difference bet­ ween ‘doctor-assisted suicide’ and ‘doctor-assisted death’.[6] In both instances, the doctor has either the ‘actual’ intention (where a fatal agent is administered) or ‘eventual’ intention (where treatment is withheld or withdrawn, or shortens the patient’s life), and has contributed to the early death of the patient.[6] However, whether or not a doctor is guilty of murder or culpable homicide will depend on whether the courts regard such conduct as lawful in terms of the values in the Constitution.[1]

Ethical aspects of ‘active’ voluntary euthanasia The HPCSA has provided Guidelines for the Withholding and Withdrawing of Treatment[35] in line with the World Medical Asso­ ciation (WMA) Declaration of Venice on Terminal Ilness.[36] The Guidelines prohibit ‘active’ euthanasia by stating that they are ‘based

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on the premise that any medical intervention where the health care professional’s primary intention is to end the patient’s life is both con­ trary to the ethics of health care and unlawful’.[35] They go on to state that ‘active euthanasia, or the wilful act by a health care professional to cause the death of a patient is unacceptable, notwithstanding whether or not such an act is performed at the request of the patient or his or her close relatives or of any person’.[35] This is qualified by stating that the ‘health care professional may alleviate the suffering of a terminally ill patient by withholding treatment, i.e. allowing the natural process of death to follow its course’,[35] which implies that a doctor may engage in ‘passive’ euthanasia if he or she has a good motive.

The WMA Resolution on Euthanasia[37] repeats much of what is in the Declaration on Terminal Illness[36] regarding active euthanasia and doctor-assisted suicide, and ‘reaffirms its strong belief that euthanasia is in conflict with basic ethical principles of medical practice’, although it does not mention whether it is referring to ‘active’ or ‘passive’ euthanasia. The distinction between ‘active’ and ‘passive’ euthanasia is, however, made in the WMA Declaration on Euthanasia[37] which states that euthanasia is ‘the act of deliberately ending the life of a patient, even at the patient’s request’. However, this ‘does not prevent the physician respecting the desire of a patient to allow the natural process of death to follow its course in the terminal phase of sickness’.[37] Presumably, the ‘basic ethical principles’ referred to in the WMA Resolution are those relating to patient autonomy, beneficence, nonmaleficence and justice or fairness.[2] It is therefore useful to consider whether these bioethical principles support the WMA’s assertion that active euthanasia is against medical ethics, in the light of the facts and decision in the Stransham-Ford case.

Patient autonomy Patient autonomy means the health practitioners recognise and respect the rights of mentally competent patients to make decisions for themselves after being given the available options.[2] The law has always recognised the right of mentally competent patients or their legal proxies to refuse treatment, even if such refusal may result in their death. As previously mentioned, the right to autonomy is recognised in the Constitution,[7] the National Health Act[13] and the South African common law. Patient autonomy is also recognised in the WMA Declaration on Terminal Illness[36] which states: ‘The patient’s right to autonomy in decision-making must be respected with regard to decisions in the terminal phase of life’ – although ‘actively assisting patients in suicide’ is ethically prohibited.[36] The court’s decision in the Stransham-Ford case was squarely based on the right of patients to autonomy as it is reflected in the Constitution[7] by the rights to respect for dignity (section 10), freedom and security of the person (section 12) and the right to privacy (section 14). The court referred to the Canadian case of Carter v. Canada (Attorney General),[11] which dealt with the provisions in the Canadian Charter of Rights that are very similar to those in the South African bill of rights[1] and in which the Canadian court stated that ‘an individual’s response to a grievous and irremediable medical condition is a matter critical to their dignity and autonomy’.[11] Much earlier, the South African Law Commission had concluded in its report on End-of-Life Decisions[8] that ‘euthanasia is a matter of personal autonomy and individual choice’.

RESEARCH There are, however, limits to the personal autonomy of patients for instance, where a patient requests a doctor to engage conduct that is unlawful or unethical – as occurred in the Michael Jackson case.[38] In such situations doctors should apply the other biomedical ethical principles to determine whether or not their conduct is ethical.[38]

Beneficence Beneficence means that healthcare professionals should contribute to the welfare of their patients.[2] This means that generally they should act in favour of preserving the lives of their patients, which is in accor­ dance with the right to life in the Constitution[7] (section 11). Terminally ill patients, with hopeless prognoses, should be encouraged to undergo palliative care before seeking to end their lives. As previously mentioned, however, the Constitutional Court has acknowledged that ‘life’ in this context is not synonymous with mere ‘existence’. For this reason, although the court in the Stransham-Ford case agreed that ‘the right to life was paramount and was sacrosanct’,[1] it acknowledged that the rights to life and dignity are ‘intertwined’, and that the ‘sacredness of the quality of life should be accentuated rather than the sacredness of life per se’.[1] Clarke’s case[29] and the English courts[30] have held that the duty to preserve life does not mean preserving it at all costs, irrespective of quality. Therefore, where a terminally ill patient with a hopeless prognosis is merely in a state of ‘existence’ it can be argued that the principle of beneficence may well justify ending such patient’s ‘existence’ at their request, irrespective of whether it is done as an act of voluntary passive or active euthanasia. Although the court did not rely on the biomedical principles, on the facts in the Stransham-Ford case it could be further argued that it would be an act of benevolence to actively release the patient from ‘eventual unbearable suffering’ and to prevent future ‘imminent intolerable and undignified suffering’.[1]

Non-maleficence Non-maleficence is linked to beneficence and means that doctors should not unnecessarily harm their patients.[2] In the context of endof-life decisions it could be used to justify outlawing ‘active’ euthanasia because it would expose weak and vulnerable patients to abuse.[1] This is a valid concern, but as the Stransham-Ford case pointed out it can be safeguarded against by providing ‘minimum safeguards’.[1] Such standards were suggested by the SA Law Commission[8] but never implemented by the State. The court did not adopt the Law Commission standards but left it open for Parliament or the Constitutional Court to decide what to do.[1] Until then the court suggested that in each case any court would ‘scrupulously scrutinise the facts before it’ and would deal with the case ‘on its own merits’.[1] The approach by the Stransham-Ford court requiring a court order for cases involving voluntary active euthanasia is in line with the criticisms of the United Nations Human Rights Committee of the Dutch[39] and Swiss laws.[40,41] In respect of the Dutch law the committee criticised it because it lacked provision for ‘independent review by a judge or magistrate to guarantee that [the] decision was not the subject of undue influence or misapprehension’.[41] The same criticism was levelled at the Swiss law which the committee stated lacked a provision for ‘independent or judicial oversight to determine that a person seeking assistance to commit suicide is operating with full, free and informed consent’.[41] The court in the Stransham-Ford case concluded by stating that the ‘relief was case dependent and certainly not a precedent for a general

uncontrolled “free for all” as was suggested’.[1] This appears to have been overlooked by some commentators on the case.[42] As was mentioned in respect of the patient autonomy principle, in the Stransham-Ford case the court agreed with the Constitutional Court’s observation that the right to life does not refer to ‘mere organic matter’ and is ‘more than existence’.[12] Therefore, it could be argued that condemning a terminally ill person with a hopeless prognosis to an undignified situation where he or she is existing as ‘mere organic matter’ is clearly a violation of the non-maleficence principle. Ironically, such a violation seems inherent in the WMA Declaration on End-of-Life Medical Care,[43] where it states that in certain cases ‘palliative sedation to unconsciousness may be offered when life expectancy is a few days’,[43] even though the WMA Declaration on Terminal Illness[43] states: ‘The physician must not employ any means that would provide no benefit for the patient’.[40]

Justice or fairness The principle of justice or fairness[2] requires doctors to treat their patients fairly and equally without discrimination. The Constitution outlaws unfair discrimination (section 9(3) and (4)) where persons in similar situations are discriminated against for reasons that are not reasonable and justifiable (section 36(1)). An example would be where two patients are in the same condition of ‘mere existence’, both termi­ nally ill and suffering intractably. Patient A is kept alive with a ventilator, while Patient B is able to breathe by himself. Patient A is legally able to request that ventilator support is withdrawn without the doctors having to obtain a court order.[29] Prior to the Stransham-Ford decision, Patient B would not legally be able to request doctor-assisted suicide because such assistance would be illegal. It seems unreasonable and unjustified for Patient B to be denied the right to have a doctor assist him to die by providing or administering a lethal agent, while Patient A who is experiencing similar and suffering is kept alive by a life-support system may legally request the removal of such support to enable him to die with dignity and in peace.[1] The legal requirements regarding in­ ten­tion and causation in both instances are the same[6] and there is no lo­gical reason for distinguishing them when considering the question of unlawfulness or indeed the ethical principle of justice or fairness. This is in essence what the court in the Stransham-Ford case found and remains the position unless it is overruled on appeal or Parliament introduces legislation setting out guidelines that are in line with the Constitution.[6]

WMA Resolution on Euthanasia The WMA Resolution on Euthanasia[37] has noted that ‘the practice of active euthanasia with physician assistance has been adopted into law in some countries’, but ‘reaffirms its strong belief that euthanasia is in conflict with basic ethical principles of medical practice’,[37] without specifying to which principles it is referring. The WMA then ‘strongly encourages all national medical associations and physicians to refrain from participating in euthanasia, even if national law allows it or decriminalises it under certain conditions’.[37] The WMA resolution merely ‘encourages’ physicians to refrain from participating in euthanasia, which is consistent with the ‘conscience’ clause (section 15) in the SA Constitution,[7] and enables doctors to decide for themselves whether they wish to be involved in voluntary active euthanasia where this is legally sanctioned. However, as mentioned in the Stransham-Ford case,[1] the Constitution[7] puts a premium on human dignity (section 10) and freedom and security of

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RESEARCH the person (section 12). This allows doctors to respect their patients’ right to autonomy and to honour a legal request for voluntary active euthanasia, despite the encouragement to desist offered by the WMA. It is submitted that in SA the admonitions by the WMA must yield to the precepts of the Constitution if their effect is to reduce the consti­ tutional rights of patients in the country. The same applies to the WMA Council Resolution on the Relation of Law and Ethics,[44] which asserts that ‘ethical responsibilities supersede legal obligations’. Such an approach cannot hold water in constitutional democracies if such professional ‘ethical responsibilities’ undermine the fundamental human rights of patients that are enshrined in the Constitution and laws of SA.

Some suggested guidelines to be considered by doctors contemplating assisting patients with legally authorised voluntary active euthanasia Until such time as the Constitutional Court or Parliament overrules the de­ ci­sion in the Stransham-Ford case, it is submitted that doctors requested to assist a terminally ill patient with voluntary active euthanasia, before engaging in such assistance, should consider whether: • Legally, there is a court order stating that a doctor may assist the patient to commit suicide through voluntary active euthanasia, and that such a doctor may not be subject to criminal prosecution, a civil action or disciplinary proceedings by the HPCSA. • Ethically, the biomedical ethical principles indicate that it is justified to assist the patient to commit suicide.[2] • The patient’s autonomy can be respected because the patient is mentally competent, has not been unduly influenced, has made the decision freely and voluntarily, and has not requested the doctor to do something illegal or unethical – in which case the doctor should decline and use the other biomedical ethical principles to come to a decision.

• The terminally ill patient with a hopeless prognosis has been encouraged to undergo palliative care before seeking assistance to commit suicide.

• Further treatment of the patient is futile.

• The mentally competent patient has indicated that he or she still wishes to be subjected to voluntary active euthanasia.

• The patient’s next-of-kin have been consulted.

• The doctors have preserved careful records of all the steps taken by them before and while assisting the patient to end his or her life.

References 1. Stransham-Ford v. the Minister of Justice and Correctional Services and Others 30 April 2015, Case no. 27401/15 (NGHC) (unreported).

2. Beauchamp TL and Childress JF. Principles of Biomedical Ethics. 3rd ed. Oxford: Oxford University Press, 1989: 67-386.

3. Hart HLA. The Concept of Law. 3rd ed. Oxford: Oxford University Press, 2012.

4. Dworkin R. Life’s Dominion – An Argument about Abortion, Euthanasia and Individual Freedom. New York: Vintage Books, 1994.

5. Singer P. Practical Ethics. 3rd ed. Cambridge: Cambridge University Press, 2011.

6. McQuoid-Mason DJ. Doctor-assisted suicide: What is the present legal position in South Africa?’ S Afr Med J 2015;105(7):526-527. [http;//dx.doi.org/10.7196/SAMJnew.7895] 7. Republic of South Africa. Constitution of the Republic of South Africa. Pretoria: Government Gazette, 1996.

8. South African Law Commission. Euthanasia and the artificial preservation of life.

Project 86. Pretoria: SA Law Commission, 1998.

9. Republic of South Africa. Ethical rules of conduct for practitioners registered under the Health Professions Act, 1974. Government Notice R717 in Government Gazette 29079 of 4 August 2006, as amended by Government Notice R68 in Government Gazette 31825 of 2 February 2009; Government Notice R654 in Government Gazette 33400 of 3 July 2010. Pretoria: Government Gazette,

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1974, 2006, 2009, 2010. www.hpcsa.co.za/.../ethical_rules/ethical_rules_of_ conduct_2011.pdf (accessed 7 October 2015).

10. Republic of South Africa. Rule 13(2)(c) of the Ethical rules of conduct for practitioners registered under the Health Professions Act, 1974. Government Notice R717 in Government Gazette 29079 of 4 August 2006, as amended by Government Notice R68 in Government Gazette 31825 of 2 February 2009; Government Notice R654 in Government Gazette 33400 of 3 July 2010. Pretoria: Government Gazette, 1974, 2006, 2009, 2010. www.hpcsa.co.za/.../ethical_rules/ ethical_rules_of_conduct_2011.pdf (accessed 7 October 2015).

11. Carter v. Canada (Attorney-General) 2015 SCC 5.

12. S v Makwanyane 1995 (3) SA 391 (CC).

13. Republic of South Africa. National Health Act No. 61. Pretoria: Government Gazette, 2003.

14. Castell v. De Greef 1994 (4) SA 408 (C).

15. Jansen van Vuuren v. Kruger 1993 (4) SA 842 (A).

16. Currie I, de Waal J. The Bill of Rights Handbook. 5th ed. Lansdowne: Juta and Co. Ltd, 2005:275.

17. Oxford University. The Compact Edition of the Oxford English Dictionary: Complete Text Reproduced Micrographically Vol 1 A-O. Oxford: Oxford University Press, 1971.

18. Hornby AS. Oxford Advanced Dictionary of Current English. 21st impression.

Oxford: Oxford University Press, 1986.

19. Harrap Ltd. Harrap’s Dictionary of Medicine and Health. London: Harrap Ltd, 1988.

20. Houghton Mifflin Harcourt Publishing. The American Heritage Medical Dictionary. Boston: Houghton Mifflin Harcourt Publishing Co, 2007.

21. Sneiderman B, McQuoid-Mason D. Decision-making and end of life: The termination of life-prolonging treatment, euthanasia (mercy-killing), and assisted suicide in Canada and South Africa. Comparative Int Law J South Afr 2000;33(2):193-209.

22. S v. Hartmann 1975 (3) SA 532 (C).

23. Burchell J. Principles of Criminal Law. 3rd ed: Lansdowne: Juta and Co. Ltd, 2006:461-463.

24. Cf. Newman v. Prinsloo 1975 (1) SA 481 (AD).

25. Burchell J. Principles of Criminal Law. 3rd ed. Lansdowne: Juta and Co. Ltd, 2006:209.

26. Cf. S v. Daniels and Others 1983 (3) SA 275 (A).

27. Mason JK, Laurie GT (eds). Mason and McCall Smith’s Medical Law and Ethics. 8th ed. Oxford: Oxford University Press, 2011:212-213.

28. McQuoid-Mason DJ. Withholding or withdrawing treatment and palliative treatment hastening death: The real reason why doctors are not held legally liable for murder. S Afr Med J 2014;104(2):102-103. [http://dx.doi.org/10.7196/ SAMJ.7405] 29. Clarke v. Hurst NO and Others 1992 (4) SA 630 (D).

30. Airedale NHS Trust v. Bland [1993] 1 All ER 821 (AC).

31. Re R [1996] 31 BMLR 127.

32. Republic of South Africa. Article 2(1)(f ) of the Termination of Life on Request and Assisted Suicide Act. Pretoria: Government Gazette, 2001.

33. Merriam-Webster Medical Dictionary. Physician-assisted Suicide Medical Definition. Massachusetts: Merriam-Webster. www.merriam-webster.com/ medical/physician-assisted%20suicide (accessed 13 August 2015).

34. Cf. S v. Grotjohn 1970 (2) SA 355 (A).

35. HPCSA. Guidelines for the Withholding and Withdrawing of Treatment. Booklet 12. Pretoria: HPCSA, 2008.

36. World Medical Association. Declaration of Venice on Terminal Illness. France: World Medical Association, 2006. www.wma.net/en/30publications/10policies/ i2/ (accessed13 August 2015).

37. World Medical Association. Resolution on Euthanasia. France: World Medical Association, 2002. www.wma.net/en/30publications/10policies/e13b/ (accessed 13 August 2015).

38. McQuoid-Mason DJ. Michael Jackson and the limits of patient autonomy. S Afr J BL 2012;5(1):11-14.

39. Dutch Government. The Termination of Life on Request and Assisted Suicide Act 2001. Amsterdam: Dutch Government, 2001. www.eutanasia.ws/documentos/ Leyes/.../%20:Ley%202002.pdf (accessed 13 August 2015).

40. Swiss Government. Swiss Penal Code (StGB) of 21 December 1937, as of 1 January 2015. Bern: Swiss Government, 2015. www.admin.ch/ch/e/rs/3/311.0.en.pdf. (accessed 13 August 2015).

41. Joseph S, Castan M. The International Covenant on Civil and Political Rights.

Oxford: Oxford University Press, 2013:212-213.

42. Larsen JV. Legal assisted suicide in South Africa. S Afr Med J 2015;105(7):513-514. [http://dx.doi.org/10.7196/SAMJnew.7706] 43. World Medical Association. Declaration on End-of-Life Medical Care. France: World Medical Association, 2011. www.wma.net/en/30publications/10policies (accessed 13 August 2015).

44. World Medical Association. Council Resolution on the Relation of Law and Ethics.

France: World Medical Association, 2003. www.wma.net/en/30publications/10p olicies/30council/cr_1/ (accessed 13 August 2015).

RESEARCH

Protection of children by substitute consent: A universal principle and right R Rheeder, BA, ThB, ThM, ThD Unit for the Development of Reformed Theology, North-West University, Potchefstroom, South Africa Corresponding author: R Rheeder (riaan.rheeder@nwu.ac.za)

In 2005, the world community and the United Nations Educational, Scientific and Cultural Organization (UNESCO), comprising 191 member nations, unanimously accepted the Universal Declaration on Bioethics and Human Rights (UDBHR). This declaration is the first and only bioethical text to which the entire world has committed itself and helps put bioethics on the agenda of states. However, it appears to have had little or no impact in South Africa (SA). This article aims to join UNESCO’s mission and to form part of the social responsibility initiative of teaching the universal right and the ethical principle of proxy consent in the context of medical intervention to promote the UDBHR in SA. We compare the UDBHR and SA Children’s Act No. 38 of 2005. It is clear that the world community sees surrogate consent as the right and duty of all communities.

S Afr J BL 2015;8(2):41-43. DOI: 10.7196/SAJBL.441

This study discusses Article 7 of the Universal Declaration on Bioethics and Human Rights (UDBHR) by the United Nations Educational, Scientific and Cultural Organization (UNESCO), which UNESCO has decalred a universal right and an ethical principle:[1] ‘In accordance with domestic law, special protection is to be given to persons who do not have the capacity to consent: (a) authorization for research and medical practice should be obtained in accordance with the best interest of the person concerned and in accordance with domestic law. However, the person concerned should be involved to the greatest extent possible in the decisionmaking process of consent, as well as that of withdrawing consent.’

The medical world generally accepts that paternalism has been re­pla­ ced by the principle of informed consent. Before medical intervention, the person must receive the necessary information and grant permission for intervention. In reality, some people are unable to understand the medical information and are unable to grant permission before medical intervention, although they have medical needs. To solve this problem, UNESCO developed Article 7a, stating that substitute consent with a view to medical intervention is permissible as a universal right.[2] The UDBHR forms a kind of common morality, which means that the principles are shared or accepted by almost all the countries in the world.

The UDBHR was accepted unanimously by the world community (191 member countries) in 2005.[3] This declaration is the first and only political and bioethical text to which all the governments in the world, including South Africa (SA),[4] have committed themselves. However, Langlois,[5] who studied in depth the reception of the UDBHR in Kenya and SA, states, ‘…

The Universal Declaration helps put bioethics on the agenda of States. … It appears to have had little or no impact in SA, however, on what is a growing and developing bioethics community. Meagre input into the drafting of the UNESCO declarations by the scientists and ethicists who must apply ethical principles in their everyday work, together with the lack of an in-country champion (a UNESCO chair or IGBC member, for instance), may have hampered take-up’.

This situation could and should be addressed by bioethics education through scientific writings. Referring to Article 23 of the UDBHR, Berlinguer declares that education in (universal) bioethics must be promoted by governments and that all scientific institutions

must contribute to education which should also take place in an interdisciplinary way.[6] Two UDBHR researchers from Africa are con­ vinced that bioethics education is necessary in Africa: ‘The relevance of bioethics education in Africa is not in doubt … Despite the efforts by UNESCO to promote bioethics education in Africa, it is still in its infancy and its development is bedeviled by numerous challenges.’[7] Unlike the other bioethical instruments, the UDBHR is directly aimed at developing countries: [1] ‘to promote equitable access to medical, scientific and technological developments as well as the greatest possible flow and the rapid sharing of knowledge concerning those developments and the sharing of benefits, with particular attention to the needs of developing countries’. The International Bioethics Committee (IBC) study on Articles 6 and 7 was also done with a pedagogical aim in mind.[3] This article aims to join UNESCO’s mission and to form part of the social responsibility initiative of teaching the universal right and ethical principle of proxy consent to promote the UDBHR in SA. In this regard: ‘First, it is important to make sure that scientists, healthcare professionals, and policy-makers all over the world are informed about the existence and the contents of the Declaration.’[8] Secondly, the following comment has been made regarding the relationship between bioethics and legislation in Africa:[7] ‘The bioethical practices and reflections are not guided by any known legislation, but by controls within the wide spectrum of communities.

Communities have their own rules and regulations when dealing with bioethical practices and they slavishly adhere to them. However, with the high diversity of communities, African bioethics lacks universality and this makes the application of legislation very complicated.’

Are the allegations true that bioethical practices in Africa and, by im­pli­cation, SA, are not governed by legislation and that in Africa and SA, bioethics lacks universality? These claims are evaluated by means of the ques­tion: Are children protected in SA regarding medical intervention and if so, does the protection agree with universal guidelines. The relevance of this evaluation is found in the following comment:[9] ‘A major concern was that international medical research and healthcare endeavours would proceed along double standards so that people in developing countries would receive substandard care and be involved in clinical trials without the ethical protection that exists in developed countries.’

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RESEARCH To meet these objectives we compare the UDBHR and Children’s Act No. 38 of 2005. In developing the UDBHR’s Article 7, a distinction was made between consent with medical practice (Art. 7a) and research (Art. 7b).[3,10] We consider only consent with medical intervention in view; a distinction also made by UNESCO.[11] Children in SA are protected by the Children’s Act No. 38 of 2005, specifically within the context of medical intervention (medical treatment and surgical procedures).[12] This paper concentrates on the UNESCO publications that explain and interpret the international promotion and education of the UDBHR.[13]

Substitute consent as universal value Surrogate consent

The content of Article 7a that deals with special protection of persons who do not have the capacity to give their consent, is considered: • First, the concept of incapacity, which forms the reason for protection • Second, human dignity, which serves as motivation for protection • Third, substitute consent as manner of protection.

Incapacity is indicated as the reason for the need for special protection as there are individuals who do not have the capacity or ability to take autonomous decisions,[3] although they need healthcare.[10] What is understood by ‘incapacity’ or the ‘inability’ to take personal decisions regarding medical intervention? The Bioethics Core Curriculum defines ‘incapacity’ as: ‘Incapacity can be defined as lacking the freedom to make authentic decisions because of an inability to make such decisions even when given the opportunity.’[11] This definition indicates people who cannot act in their own best interests and includes groups such as newborn infants and minors, clinically confused people, persons with learning difficulties, mentally handicapped people and unconscious people.[10] A distinction is also made between no and limited capacity and in the latter, a variable degree of capacity.[2,3] Secondly, human dignity provides the motivation for special protection and is the point of departure in Article 3 of the UDBHR. There is a causal connection between Articles 3 and 7 of the UDBHR in the way that human dignity forms the rationale for persons without capacity having a right to be protected within the medical environment.[3,10,14] This is confirmed by Article 2 of the UDBHR, which states that the aim of the declaration is, among others, ‘to provide a universal framework of principles’ with the specific goal ‘to promote respect for human dignity’.[1] Article 7 supports the human dignity of persons without capacity (‘persons who do not have the capacity to consent’) and their right to be treated with human dignity.

Thirdly, substitute consent, as a method of protection, is accepted by the world community. Under ‘protection’ is understood that ‘authorization for … medical practice should be obtained’.[10,15] This authorisation is understood as substitute consent,[3] which means that another person or body may grant permission for medical intervention on behalf of the person involved. The implication of this principle is that the right to grant permission is transferred to another person or institution; e.g. where parents may take decisions on behalf of their children. UNESCO and the global community acknowledge that something in the nature of loving substitute consent exists: ‘Some benevolent paternalism takes place in real life and, in our opinion, is not necessarily misguided or exerted against the patient’s wishes. It is a matter of finding honestly the right balance considering a trusting human relationship, the wish to support and protect a comparatively fragile individual, and the ethical and legal rules.’[10]

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Directives for consent There is global bioethical consensus that consent should not rest upon the exclusive autonomy of the surrogate, but should be authentic (autonomy as authenticity).[2] According to the UDBHR, it means that substitute decisions must meet the following three criteria for consent to be authentic:[2,3]

Best interests The surrogate may only grant consent that will further the best interests of the person (‘in accordance with the best interest of the person concerned’). This first criterion mentioned in Article 7a, means that all consent must be led by this criterion, but that it is especially appropriate when a person is permanently without capacity to grant permission for intervention. What do UNESCO and the world community regard as the best interests? Article 3 of the UDBHR determines that ‘the interests and welfare of the individual should have priority over the sole interest of science or society’.[1] This principle aims to protect the person against harm where an individual could be exploited by the community as a means to an end.[2] Article 4 of the UDBHR refers directly to best interests as:[1] ‘In applying and advancing scientific knowledge, medical practice and associated technologies, direct and indirect benefits to patients, research participants and other affected individuals should be maximized and any possible harm to such individuals should be minimized.’

In Bioethics Curriculum Section 1: Syllabus Ethics Education Programme, an official handbook and commentary of the UDBHR, UNESCO describes best interests as the following:[11] • Protection and defence of a person’s rights (the right to health) • Prevention of harm in the form of illness and impairment to a person (preventive action) • Alleviation or diminution of harm to a person (palliation of the effects of disease; relief of pain) • Elimination of circumstances that would cause harm to a person (healing) • Helping people with disabilities • Psychological help • Saving people from risk • Balancing of benefits, disadvantages and cost regarding the person.

Linking with these, best interests is also regarded as the absence of the following harming actions:[10] • Physical harm (killing or the causing of pain and suffering) • Psychological harm (offence and unkindness) • Moral harm (having no regard for the ethical interests of the individual) • Social and economic harm (stigmatising or exploitation) • Spiritual harm (religious discrimination) • Adequate information.

Article 6 of the UDBHR states that in order to grant consent for medical intervention that will be in the best interests of the patient, the surrogate must receive the same information as a person with capacity would have received before making a decision.[2] Article 6 of the UDBHR declares that informed consent must comprise adequate information.[1] The UDBHR also states that substitute consent must be granted in accordance with domestic law (‘authorization for … medical practice should be obtained … in accordance with domestic law’).

Participation The person without capacity must be involved in the decision-making process as far as possible. Regarding the principle of participatory

RESEARCH decision-making; ‘the person concerned should be involved to the greatest extent possible in the decision-making process of consent’.

Ethical responsibility is the following: ‘One can say that the generally accepted ethical position considers that the physician ... is not exempted, for example, to try as best as he can to inform children, handicapped persons or mental patients in order to obtain from them the best possible consent … that is to take maximum advantage of the person’s potential contribution to the decision to be made, be it to consent or to refuse.’[10] Article 5 of the UDBHR states that participatory consent is aimed at people with (gradual) limited incapacity and that the principle of autonomy should be respected as far as possible, therefore the directive that children should not be excluded or alienated from the decision-making process as a matter of course.[10] This norm aims to protect a person without capacity against absolute paternalism and where persons are totally deprived of their basic right or juridical capacity to grant consent and to place the decision-making completely in the hands of a parent or guardian.[2] This directive requires that the opinion of children be taken into account proportionally to their age and capability,[2] and should not be linked exclusively to a certain age. Together with participating consent, the UDBHR also states the principle of withdrawal of consent.[3] In this case participatory consent must be considered as a form of best interest that does not exclude the comprehensive notion of best interest mentioned above.

Assessment UNESCO accepts in its declaration that by virtue of human dignity, children must be considered as persons without capacity who must be protected by means of substitute consent during medical intervention.

These universal ethical guidelines are underwritten by the Children’s Act No. 38 of 2005: • Chapter 7: Protection of Children Part 3: Protective measures relating to health of children 129. Consent to medical treatment and surgical operation.

• All proceedings, actions or decisions in a matter concerning a child must- … b) respect the child’s inherent dignity…

• … a child may be subjected to medical treatment or a surgical operation only if consent for such treatment or operation has been given in terms of either subsection…[12,16] The UDBHR indicates directives that must be considered when parents or guardians give substitute consent within the context of medical intervention, namely: best interests; receiving relevant information; in accordance with domestic legislation; and participatory decision-making.

These universal ethical guidelines are expressed in the Children’s Act No. 38 of 2005 and must be considered in the decision-making process: • In all matters concerning the care, protection and well-being of a child the standard that the child’s best interests is of paramount importance, must be applied.

• Every child has the right to have access to information on health promotion and the prevention and treatment of ill-health and disease, sexuality and reproduction.

• Every child that is of such an age, maturity and stage of development as to be able to participate in any matter concerning that child has the right to participate in an appropriate way and views expressed by the child must be given due consideration.[12,17] We can conclude that there is a remarkable similarity between the global bioethical guidelines of the UDBHR and the Children’s Act No. 38 of 2005.

Conclusion The world community sees surrogate consent as the right and duty of all communities and is convinced that, based on human dignity, people without capacity and specifically children, must be protected within the medical environment by substitute consent. This consent is not left to the autonomy of the surrogate, which means that all consent must be directed by the norms of best interests and participatory decision-making. Comparing the UDBHR with the Children’s Act No. 38 of 2005, we conclude that the Children’s Act concurs with universal bioethical guidelines and ideals of human rights regarding the protection of children during medical intervention. Therefore, the allegation[7] that African and South African bioethics is not universal in nature is incorrect in the case of domestic legislation’s medical protection of children. Bioethical discussion without reference to UDBHR in SA is incomplete.

We trust that this discussion contributes to a greater awareness of it.

References 1. UNESCO. Universal Declaration on Bioethics and Human Rights. Paris: UNESCO Publishing, 2006. http://unesdoc.unesco.org/images/0014/001461/146180e.pdf (accessed 18 November 2013).

2. Gefenas E, Tuzaite E. Persons without the capacity to consent. In: Ten Have H, Gordijn B, eds. Handbook of Global Bioethics. Dordrecht: Springer Science and Business Media, 2014:85-103.

3. International Bioethics Committee. Report of the International Bioethics Committee of UNESCO (IBC) on Consent. France, IBC, 2008. http://unesdoc. unesco.org/images/0017/001781/178124e.pdf (accessed 18 November 2013).

4. UNESCO. Records of the General Conference 33rd session Paris, 3-21 October 2005, Volume 1 Resolutions. Paris: UNESCO Publishing, 2005. http://unesdoc. unesco.org/images/0014/001428/142825e.pdf (accessed 18 November 2013).

5. Langlois A. Negotiating Bioethics: The Governance of UNESCO’s Bioethics Programme. New York: Routledge, 2013.

6. Berlinguer G. Article 23: Bioethics education, training and information. In: Ten Have H, Jean M, eds. The UNESCO Universal Declaration on Bioethics and Human Rights: Background, principles and application, Ethics series. Paris: UNESCO Publishing, 2009:309-315.

7. Mathooko J, Kipkemboi J. African perspectives. In: Ten Have H, Gordijn B, eds.

Handbook of Global Bioethics. Dordrecht: Springer Science and Business Media, 2014:253-268.

8. Ten Have H, Gordijn B. Structure of the compendium. In: Ten Have H, Gordijn B, eds. Handbook of Global Bioethics. Dordrecht: Springer Science and Business Media, 2014:35-41.

9. Ten Have H, Gordijn B. Global bioethics. In: Ten Have H, Gordijn B, eds. Handbook of Global Bioethics. Dordrecht: Springer Science and Business Media, 2014:3-18.

10. Martin JF. Article 7: Persons without the capacity to consent. In: Ten Have, H, Jean M, eds. The UNESCO Universal Declaration on Bioethics and Human Rights: Background, Principles and Application, Ethics series. Paris: UNESCO Publishing, 2009:139-154.

11. UNESCO. Bioethics Core Curriculum. Section 1: Syllabus Ethics Education Programme Sector For Social And Human Sciences Division Of Ethics Of Science And Technology. Paris: UNESCO, 2008. http://unesdoc.unesco.org/ images/0016/001636/163613e.pdf (accessed 18 November 2013).

12. Snead OC, Mulder-Westrate K. Autonomy and individual responsibility. In: Ten Have H, Gordijn B, eds. Handbook of Global Bioethics. Dordrecht: Springer Science and Business Media, 2014:75-83.

13. UNESCO. Explanatory Memorandum on the Elaboration of The Preliminary Draft Declaration on Universal Norms on Bioethics. Paris: UNESCO Publishing, 2005. http://unesdoc.unesco.org/images/0013/001390/139024e.pdf (accessed 7 October 2014).

14. Pellegrino ED. Article 4: Benefit and harm. In:Ten Have, H, Jean M, eds. The UNESCO Universal Declaration on Bioethics and Human Rights: background, principles and application, Ethics series. Paris: UNESCO Publishing, 2009:99-110.

15. UNESCO. Casebook on Bioethics and the Holocaust. Paris: UNESCO Publishing, 2013. http://www.unesco-chair-bioethics.org/UI/F0101.aspx?uid=F8D02FF3F880A4FE (accessed 18 November 2013).

16. Republic of South Africa. Children’s Act 38 of 2005, Section 129(1); Section 2 (a)(b); Part 3, Protective measures relating to health of children (ss 129 – 142); Section 129(1); Section 129, Consent to medical treatment and surgical operation.

Pretoria: Government Printer, 2005.

17. Republic of South Africa. Children’s Act 38 of 2005, Section 9; Section 13(1)(c); Section 7; Section 129(2)(3); Section 10,31(1). Pretoria: Government Printer, 2005.

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RESEARCH

Organ procurement in Israel: Lessons for South Africa M Slabbert,1 BA (Hons) HED, B Proc, LLB, LLD; B Venter,2 LLB, LLM 1 2

Department of Jurisprudence, University of South Africa, Pretoria, South Africa Faculty of Law, Midrand Graduate Institute, Midrand, South Africa

Corresponding author: B Venter (bonniev@mgi.ac.za)

Modern medicine makes it possible to transplant not only kidneys but any solid organs from one human body to another. Although it is the ideal to harvest organs from a brain-dead person, a kidney or a part of the liver or lung can be transplanted from a living donor to a patient.

The majority of countries where organ transplants are performed have a dire need for transplantable organs as the current systems of organ procurement are not obtaining a sufficient amount of transplantable organs. Today’s cruel reality is that many patients are dying while waiting for a transplant. Few nations are able to meet the organ demand through their domestic transplant systems and there is a constant debate about ethical ways of procuring organs for transplantation purposes. This article will scrutinise the Israeli system of organ procurement and it will be compared with the current system of organ donation in South Africa (SA) in order to indicate whether SA could possibly, or should, follow the example of Israel to improve its acute donor organ shortage.

S Afr J BL 2015;8(2):44-47. DOI:10.7196/SAJBL.444

Since the first kidney transplant a new chance of life has been created for many dialysis patients. Modern medicine makes it possible to transplant not only kidneys but any solid organs from one human body to another. Although it is the ideal to harvest organs from a brain-dead person, a kidney or a part of the liver or lung can be transplanted from a living donor to a patient. The majority of countries, where organ transplants are performed, have a dire need for transplantable organs as the current systems of organ procurement are not obtaining a sufficient number of transplantable organs. Today’s cruel reality is that many patients are dying while waiting for a transplant – this is an unfair and sad reality of life.[1] Few nations are able to meet the organ demand through their domestic transplant systems and there is a constant debate about ethical ways of procuring organs for transplantation purposes. All organ donations are mainly altruistic, meaning there are no financial incentives for people who are willing to have their organs or the organs of their deceased family member used for transplants. Unfortunately the altruistic supply of organs has been less than adequate and the gap between supply and demand has worsened over time.[2] Globally countries either follow an ‘opting-in’ or an ‘opting-out’ organ procurement system.[3] ‘Opting-in’ is an altruistic form of organ donation where the organ donor either donates an organ as a living person after giving informed consent, or as a deceased person, having given consent to a donation pre-mortem.[4] ‘Opting-out’ is a system where every citizen of a specific country is automatically an organ donor unless the individual registers his or her objection to being an organ donor.[4] Opting-out mainly concerns deceased donors. If a donor in an opting-out system wants to donate a kidney as a living person, informed consent is still necessary.[5] Direct payment for an organ donation is illegal in nearly all countries.

It is also condemned by the World Health Organization[6] and the Declaration of Istanbul[7] although both allow the reimbursement of costs in relation to the donation.[8] It should be noted that the

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Declaration does not provide explicit support for donor incentives.

The fundamental idea of the Declaration, signed by 78 countries around the world (including South Africa (SA)) is striving to achieve self-sufficiency in organ donation by providing a sufficient number of organs for residents in need, from within the country, while blocking transplant tourism by banning its reimbursement. Singapore[9] has recently begun to compensate living donors according to their Human Organ Transplant Act, but it has not yet succeeded in eliminating the kidney shortage. This Act determines, in section 14(3), that the organ donor may be reimbursed for costs incurred by the donation. It is not a direct payment to the organ receiver and an ethics committee determines the total amount that the receiver should pay to the organ donor. Iran focuses on living donors and they pay the donors, in contravention with the rest of the world, but their donor waiting list is longer than the list of people waiting for a transplantable organ.[10] Iran also has laws in place that protect the basic rights of the paid donors.[11] Israel has also decided to address the organ shortage in their country as their rate of deceased organ donations is one of the lowest when compared to other developed countries.[12] Only 16% of adult Israelis signed donor cards and 45% of families consented to deceased donation, yielding a very low rate of 6 - 9 per million population (the current population is around 8 million), compared to 35%, 25% and 17% in Spain, France and the UK respectively.[12] Their new Organ Transplant Act has enabled them to develop a unique system without paying the donor directly, although they allow some form of financial compensation for living donors.[13] This article will scrutinise the Israeli system of organ procurement and it will be compared with the current system of organ donation in South Africa (SA) in order to indicate whether SA could possibly (or should) follow the example of Israel.

Israel’s Organ Transplant Act 2008 In order to address the shortage of transplantable organs in Israel, a committee, including transplant physicians, coordinators, lawyers,

RESEARCH philosophers, ethicists and representatives of the main religions was established. Their recommendations resulted in new transplant legislation for Israel.[14] In January 2010 the new law governing organ donation and allo­ca­ tion, the Organ Transplant Act 2008, came into effect.13 The aim of the Act is mainly to increase the number of organ donations by introducing a priority system. The Act itself does not enshrine the details of the system, as this should be done at policy level. According to the Israeli system a person (or people on a waiting list) can gain priority points by: • signing a donor card pre-mortem • making a non-directed/non-specified organ donation during their lifetime • way of a first-degree relative signing a donor card or consenting to procurement of organs after death.[14]

for transplantation. This creates the perception that the moral good of living donations are aligned with permission to use a deceased person’s organs. The system also does not allocate points to living donors who have directed their donation to a loved one, for example a mother to a child.[13,19] The sacrifice a living donor makes cannot be compared with just giving consent for a donation to take place from a deceased body of a first-degree relative, as it cannot be equated with the risk of a living donation.

‘Directed living donors assume risk during their lifetime to aid another human being. In doing so, they shorten the waiting list by one: they help not only their recipient but everyone else waiting for an organ … the Israeli system treats previous living donors inequitably.’[14]

The priority system means that you will be treated with priority should you need an organ for transplantation purposes. In other words it gives you preferential status and an increased chance of receiving a donor organ should you be in need of an organ transplant. The system functions on the premise that justice demands that those who are willing to receive an organ should also be willing to donate one.[13,15] The priority received by way of one of the above three ways is subdivided into maximum priority, regular priority and second priority.

Maximum priority is granted to a candidate if he or she has given consent for an organ donation from a deceased first-degree relative or the candidate has donated a kidney, a liver lobe, or a lung lobe as a living donor to a non-specified recipient. Regular priority is granted to candidates who hold a donor card, in other words those who have consented to donate their organs after their death. Second priority is granted to candidates with a first-degree relative who hold a donor card, even if they do not hold a donor card themselves.[13,16] The Act also allows for a form of compensation for living donors.

Compensation to living donors covers 40 days of lost wages and up to 30 000 shekels for proven medical expenses, up to 5 years. These include transportation costs, supplementary and private medical insurance, disability insurance, life insurance, five psychological treatment sessions and a week-long convalescence vacation.[17] Israel is also the first country in the world to reward deceased organ donors. For deceased donors the National Organ Transplantation Centre bears the burial costs. The law also authorises the Health Ministry to offer a reward to a person for agreeing to donate the de­­ cea­­sed person’s organs.[12] Satel[18] gives an example of how deceased donors’ families are rewarded. A family of a man that was declared brain dead received an amount of 10 000 Israeli shekels in recognition of the wife’s decision to allow his liver, kidneys and lungs to be taken for transplantation. The money comes from the company’s charitable contributions and it may be used in any way the family see fit to memorialise the deceased. The director of the company, who gave the money to the wife, said when he handed the money over: ‘in this country we always talk about military heroism … [T]his is clearly a case of civilian heroism. [His organs] saved four lives … [the] family should be blessed’.[18] Even though the Israeli system seems to be a solution to organ procurement the process raises some concerns.

It therefore seems very unfair not to give priority points for directed living donations and to equalise a living undirected donation with permission to use organs of a deceased first-degree relative.[14] One’s chances of obtaining priority points also depend on how many firstdegree relatives a person has which automatically disadvantages those with fewer siblings, something which is beyond a person’s control.[14] According to Quigley et al.[14] this aspect of the allocation system involves an element of unfairness as the more siblings one has, the greater the likelihood of giving consent to a donation. Also those with fewer potential living donors will have to wait for an organ from a deceased donor, but within the new system of priority points they are less likely to gain enough points based on the actions of their relatives.

It is globally accepted that transplantable organs should be allocated to those with the greatest medical need. The priority point system moves away from this principle as it restricts access to a transplantable organ to those individuals who participate in the point system above those with a medical need.[13] This means that an adult who signs up to be an organ donor prior to the time when he or she needs an organ will be given pri­ ority over another adult in need of the same organ who had not previously signed up to be a donor. Principles of equity and justice are therefore compromised by taking non-medical factors into account in determining which patients should receive an organ off the transplant waiting list.[13] The incentive of priority points, based on having a donor card or a first-degree relative having a donor card, is not offered for the actual organs but for the promise that they will be available for transplantation after death. People could therefore just join the donor register to get priority points while they at the same time inform their relatives that they do not wish to donate organs after death.[14] This is an important point of criticism as the Israelis follow an opting-in system in which the consent of first-degree relatives is obtained when a person dies, even if the person who has passed away had a signed donor card him- or herself.[14] Because Israel is the first country to implement priority points, no evidence exists whether the above will happen;[14] only time will tell.

Yet, the other side of this argument could be that relatives can consent after the person’s death to a donation even though they knew the deceased did not want to donate. Their decision could be influenced by getting extra priority points for themselves; it therefore gives them an incentive to donate a loved one’s organs. This raises questions regarding the primacy of individual autonomy.[14]

Concerns about the new Act

Positive aspects about the new Israeli law

The Act treats a living donor the same as someone who has given consent that organs from a first-degree deceased relative may be used

Since the introduction of the Act, Israel has witnessed a record number of people signing donor cards and there has been a

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RESEARCH significant increase in the actual number of transplants. The system reflects a communitarian model where everyone stands to benefit from cooperation, whereas the purely opting-in system without any rewards is very much founded on personal autonomy. The system can also be seen as ‘reciprocal altruism’ and ‘a signal of solidarity by sharing organs as public good rather than as an exercise of a quasi-property right’.[13] From a utilitarian perspective it seems a win-win situation and the system does away completely with ‘free riders’.[13] In the past Israeli insurance companies and sick funds have reim­ bursed transplant operations performed anywhere in the world, regardless of where the donors were from or the legality of the operations.[20] The new law bans such reimbursement for organ transplantations, where the procurement of the organs were against the local laws or where organs have been involved in organ trafficking.

[17] The Act precisely defines the circumstances of organ trade and trafficking and declares it a criminal offence punishable by 3 years’ imprisonment, together with a large fine.[17] Israeli patients travelling to venues like China for deceased heart or liver transplants have stopped completely since the inception of the new law.[17] It is illegal to broker a transaction between potential living donors and recipients.[17] To avoid the Israeli system being labelled a commo­ dification of the human body, Israeli authorities label the financial reward to living donors as compensation for the donor’s pain and suffering as opposed to payment for an organ.[17] Israel has also chosen specifically not to follow the Iranian model of paid organ donation.[2] The implementation of the new Israeli law was accompanied by extensive media campaigns. The general public was educated about the importance of organ donations. The public was also informed about approaches within Jewish tradition that allow organ donations and even see it as a religious imperative to save lives.[21] Despite the arguments for and against the new Israeli system the biggest achievement is that fewer people are dying waiting for a transplantable organ. SA needs more donors and despite campaigns in the media, the waiting list increases every year, especially the need for kidneys, which could be resolved by using more living donors. The problem seems to be altruism as few people would give up a kidney purely to help another person. Maybe incentives might be the solution.

Lessons for SA In SA, approximately 10 000 people, young and old, of all ethnicities die of kidney disease or kidney failure every year.[22] Others are luckier and can be treated by means of renal dialysis or a kidney transplant.

A kidney transplant may sound like a straightforward solution but unfortunately kidneys for transplantation are a very scarce resource.

Waiting times for a new kidney vary but can currently be estimated at anything between 6 to 12 years.[23] In 2014, 213 kidney transplants were performed,[24] but only 93 kidneys were from a living donor – a living donor includes a related and non-related donor. This is an alarming statistic if one keeps in mind that SA has a population of nearly 54 million people.

The requirements for lawful kidney transplantations are to the utmost extent regulated by legislation such as the Constitution of the Republic of South Africa, 1996 and the National Health Act of 2003 (hereafter referred to as the Act) as well as the regulations in terms thereof. Section 60 of the Act imposes a strict limitation on the buying and selling of organs, which underlines the fact that all

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donations should be regarded as a ‘gift of life’. According to Section 60(4)(a) of the Act: ‘It is an offence for a person who has donated tissue, a gamete, blood or a blood product to receive any form of financial or other reward for such donation, except for the reimbursement of reasonable costs incurred by him or her to provide such donation’.

Yet, section 60(4)(a) of the Act stipulates that a donor may receive a reimbursement of reasonable costs incurred to provide a donation.

Unfortunately neither the Act, nor the regulations determine who will be liable for these costs or what exactly ‘reasonable costs’ entail.

In this regard SA has a similar clause to Singapore’s Human Organ Transplant Act but the Singapore Act follows specific guidelines of what the reimbursement entails, for example: travelling costs, medical expenses and time lost at work. Because of this lack of clarity in the National Health Act, guidance could be sought in the Constitution, specifically section 39(1) which states when interpreting the Bill of Rights, international law must be considered and foreign law may be considered. In other words SA could consider how other countries have interpreted the payment of ‘reasonable costs’ in connection with an organ transplant.

Within one year after the implementation of the new legislation in Israel there was a significant increase in the number of organ donors, from 7.8 to 11.4 donors per million population, in parallel to a significant increase in the number of new registered donors that rose by 71 229 donors.[17] Transplant tourism has also sharply decreased from 155 kidney transplantations being performed abroad to a mere 35 in one year. These statistics clearly illustrate that SA can improve its acute organ shortage by taking a leaf from Israel’s book regarding their new organ procurement system. The priority point system, as discussed above, with its concerns and positive aspects cannot be applied as it is currently in SA as it does not have a national database of either organ donors or people in need of organs. Organ transplants are also not a priority for the Department of Health. The allocation of points will therefore be a major obstacle, in other words the Israeli system although it has positive aspects is not the ideal solution for SA but what SA can learn from them is that government intervention in changing their legislation made a huge difference to the patients waiting for an organ in Israel.

There are a number of points that SA can assimilate from the Israeli approach. First, it should be noted that SA’s organ transplantation legislation forms a minute part (15 of 94 sections) of the National Health Act, one Act that provides a framework for the entire health system in SA. Israel, and the majority of countries excelling in the field of organ donation, follow a different approach and their organ transplantations are governed by an entirely separate act.[25] Second, the Israeli Organ Transplant Act makes provision for the establishment of a database at the Transplant Centre that shall contain the details of both people waiting for an organ as well as the particulars of people who indicated their willingness be an organ donor. SA does not have a national waiting list nor does it have any form of consolidated database – every transplant hospital has its own separate database of recipients waiting for a lifesaving organ. Thirdly, the Israeli Transplant Act makes provision for the reimbursement of a living and deceased donor. According to section 22 of the Act a uniform sum of money will be paid to all living organ donors as compensation for the monetary loss reasonably attributable to the procedures associated with organ removal. The Act also further stipulates, in section 30, that the burial costs as well as the transportation of the deceased organ donor’s body

RESEARCH will be paid for. This is not done in SA and might not be an option as there are too many other aspects needed in place before payment can even be considered. Lastly, the Israeli Act makes provision for the motivation and recognition of organ donors. According to the Act the donor shall be awarded a certificate of recognition and shall receive other benefits such as being exempted from entrance charges to national parks.[26] The Israelis will also receive priority under the priority point system discussed earlier. SA legislation does not provide for the motivation or recognition of organ donors which is evident when looking at long-standing substandard organ donation statistics.

It can clearly be deducted from the discussion above that Israel realised that a dire need for transplantable organs exists, and took a decision to address the problem and seek a solution for their acute organ shortage. There may be flaws and criticism against Israel’s preferred system but one thing that cannot be argued is that there has been a significant improvement in their organ transplantation numbers. It can currently be argued that SA’s transplant legislation and regulations are not aimed at finding a suitable solution for the overwhelming need for transplantable organs. Organ transplants are not regarded as a priority in the SA health system, even though 20% of the population suffers from major health problems that can lead to kidney failure.[27] It will be reprehensible if the shortfall of legislative development, as discussed above, is the only reason why South Africans waiting for a transplantable organ are left hopeless.

Conclusion The challenge of every organ procurement system is to design a policy that will increase the supply of transplantable organs without creating social segregation, discrimination or coerced retrieval.[13] The Israeli system, if successfully implemented, would represent a landmark change in organ donation and allocation and set an example from which we could learn.[13] In 2011 Israel saw an unprecedented increase in consent for donations and a record number of 70 000 people signed a donor card. Transplants have increased by 68%.[14] Any improvement is worthwhile, as an economist at George Mason University said: ‘… too much attention [is] placed on eliminating the shortage and that if you haven’t eliminated the shortage you haven’t solved the problem. [Yet], every attempted solution doesn’t have to solve the problem 100 per cent’.[.28] References 1. Cantarovich F. Reducing the organ shortage by education and fostering a sense of social responsibility. Transplant Proc 2003;35(3):1153-1155.[http://dx.doi. org/10.1016/S0041-1345(03)00129-5] 2. Ghods AJ, Savaj S. Iranian model of paid and regulated living-unrelated kidney donation. Clin J Am Soc Nephrol 2006;1(6):1136-1145. [http://dx.doi.org/10.2215/ CJN.00700206] 3. Blackbeard M. Consent to Organ Transplantation. THRHR 2008;66(1):47-48.

4. Schicktanz S, Wiesermann C, Wohlke S. Teaching ethics in organ transplantation and tissue donation. Gottingen: Universitatverlag, 2010:4.

5. Statz SE. Finding the winning combination: How blending organ procurement systems used internationally can reduce the organ shortage. Vanderbilt J Transnat

L 2006;(39):1690-1697.

6. World Health Organization. Human Organ Transplantation. Geneva: World Health Organization, 2014. http://www.who.int/transplantation/organ/en/ (accessed 24 November 2014).

7. Participants in the International Summit on Transplant Tourism and Organ Trafficking. The Declaration of Istanbul on Organ Trafficking and Transplant Tourism. Transplantation 2008;86(8):1013-1018. [http://dx.doi.org/10-1097/ TP.0b013e318185ffc9] 8. Lavee J, Ashkenazi T, Stoler A, Cohen J, Beyar R. Preliminary marked increase in the national organ donation rate in Israel following implementation of a new organ transplantation law. Am J Transplant 2013;(13):784-789. [http://dx.doi. org/10.1111/ajt.12001] 9. Venter B, Slabbert M. Rewarding a living kidney donor: A comparison between South Africa, Singapore and Iran. Obiter 2013;34(2):185-199.

10. Fry- Revere S. The Kidney Sellers: A journey of Discovery in Iran. Durham: Carolina Academic Press. 2014:8.

11. Major RWL. Paying kidney donors: Time to follow Iran? Mcgill J Med 2008;11(1):67-69.

12. Siegal G. Making the case for directed organ donation to registered donors in Israel. Isr J Health Policy Res 2014;3(1):1. [http://dx.doi.org/10.1186/2045-40153-1] 13. Cronin AJ. Points mean prizes: Priority points, preferential status and directed organ donation in Israel. Isr J Health Policy Res 2014;3(1):8..[http://dx.doi. org/10.1186/2045-4015-3-8] 14. Quigley M, Wright L, Ravitsky V. Organ donation and priority points in Israel: An ethical analysis. Transplantation 2012;93(10):970-973. [http://dx.doi.org/10.1097/ TP.0b013e31824e3d95] 15. August JG. Modern models of organ donation: Challenging increases of federal power to save lives. Hastings Constitutional Law Quarterly. 2013;40(2):394-422.

16. Lavee J, Ashkenazi T, Gurman G, Steinberg D. A new law for allocation of donor organs in Israel. Lancet 2009;375(9720):1131-1133. [http://dx.doi.org/10.1016/ SO140-6736(09)61795-5] 17. Jotkowitz A. Notes on the new Israeli organ donation law – 2008. Transplant Proc 2008;40(10):3297-3298. [http://dx.doi.org/10.1016/j.transproceed.2008.08.128] 18. Satel S, Kidney M. Israel’s remarkable new steps to solve its organ shortage.

New York: The Slate Group Medical Examinier, 2010. http://www.slate.com/ articles/health_and_science/medical_examiner/2010/01/kidney_ (accessed 21 November 2014).

19. Wright L, Silva DS. Incentives for organ donation: Israel’s novel approach. Lancet 2010;375(9722):1233-1234. [http://dx.doi.org/10.1016/S0140-6736(09)61520-8] 20. Slabbert M, Oosthuizen H. The payment for an organ and the admission of guilt by a South African hospital – The State v. Netcare Kwa-Zulu Natal (Pty) Ltd. Obiter 2011;32(3):740-746.

21. Ravitsky V. Incentives for post-mortem organ donation: Ethical and cultural considerations. J Med Ethics 2013;39(6):381-382. [http://dx.doi.org/10.1136/ medethics-2013-101322] 22. National Kidney Foundation. Kidney Disease. Houghton: National Kidney Foundation, 2015. http://www.nkf.org.za/kidney_disease.htm#startling_facts (accessed 22 April 2015).

23. National Kidney Foundation. Kidney Disease: How is it treated. Houghton: National Kidney Foundation, 2015. http://www.nkf.org.za/kidney_disease. htm#HOW_IS_IT_TREATED (accessed 22 April 2015).

24. Organ Donor Foundation. Transplant Statistics. Cape Town: Organ Donor Foundation, 2015. https://www.odf.org.za/2013-06-11-09-17-45/statistics.html (accessed 22 April 2015).

25. Republic of South Africa. Organ Transplant Act. Pretoria: Government Gazette, 2008.

26. Republic of South Africa. Organ Transplant Act, Section 23. Pretoria: Government Gazette, 2008.

27. Anonymous. Unhealthy SA lifestyles boost organ demand. Cape Town: Health 24.com, 2015. http://www.health24.com/News/Unhealthy-SA-lifestyles-boostorgan-demand-20140929 (accessed 22 April 2015).

28. Linde D. Israel, a leader in transplant tourism, finds a formula for increasing domestic donations. New York: Tablet Magazine, 2015. http://tabletmag.com/ jewish-news-and-politics/164976/israel-organ-donation/?print=1 (accessed 20 November 2014).

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CASE STUDY

Virtue ethics: Beyond moral theory K Koch,1 MB ChB; C N Menezes,2 MD, MMed (Int Med), Dip HIV Mang (SA), DTM&H, FCP (SA), Cert ID (SA), PhD Department of Internal Medicine, Chris Hani Baragwanath Academic Hospital, Soweto, South Africa General Internal Medicine Unit and Principal Specialist, Division of Infectious Diseases, Department of Internal Medicine, Chris Hani Baragwanath Academic Hospital, Soweto, South Africa 1 2

Corresponding author: K Koch (karenk@vodamail.co.za)

In December 2013, a 52-year-old-man who is a prac­ tising Jehovah’s Witness was admitted to Chris Hani Baragwanath Hospital (CHBAH), Soweto, Johannesburg.

This, the third largest hospital in the world, provides medical services to more than one million local residents.[1] It has the busiest internal medicine unit in South Africa (SA) with 833 beds and a staff comprised of 133 doctors.[2] He presented with an upper gastrointestinal bleed secondary to warfarin use for a left femoro-popliteal deep vein thrombosis diagnosed during a previous admission. At the time of this admission his haemo­ globin was 4.5 g/dL. He was counselled regarding the need for blood transfusion in the face of his ongoing bleed and the lack of other medical alternatives but remained unmoved. Both the patient and his family specifically requested a blood substitute product – a bovine haemoglobin-based oxygen carrier (HBOC) in the face of his critical condition and currently accepted religious practice. The requested product was deregistered in SA in 2008 due to concerns regarding serious cardiovascular side-effects.[3] It can be imported as a section 21 drug for compassionate use but has not been used for several years.[4] The warfarin was stopped and vitamin K administered to control the bleeding diathesis. All reasonable attempts were made to identify and stop the source of bleeding including gastroscopy and computed tomography (CT) angiography. Despite supportive treatment, his condition deteriorated. It took six days for HBOC to be approved and imported to South Africa by which time the patient’s haemoglobin had dropped to 2.2 g/dL and he was experiencing severe shortness of breath, dizziness, weakness and chest pain.

He consented to and received an overall 3.6 g/kg of the HBOC over a period of 10 days. He experienced certain transient negative sideeffects. His total haemoglobin increased to 10.5 g/dL within three weeks. A repeat Doppler-sonar confirmed the absence of any residual deep vein thrombosis and warfarin was not recommenced.

A simple ethical dilemma The dilemma of a Jehovah’s Witness declining blood products is not new. Moral theories provide us with a framework to analyse the ‘right’ decision. We are all familiar with the principles of justice, autonomy, beneficence and non-maleficence outlined by Beauchamp and Childress[5] in The Principles of Biomedical Ethics.

The question of utilising an experimental HBOC is less obvious. Patients requesting access to experimental treatments raise many ethical con­ cerns. Autonomy, informed consent, non-maleficence (‘do no harm’) and beneficence are all factors which the treating doctor must address.[5,6] In this case, our patient had clearly declined blood products – a decision well enshrined in medical literature and one which we

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understood ourselves to be obliged to abide by. In general, we are comfortable with the concept of ‘autonomy’ as the patient’s right to accept or decline treatment. We are not accustomed to extending this concept to embrace the individual’s right to access experimental treatments. Without the family specifically requesting such treatment, the experimental nature of the product may have precluded it from entering any patient discussions.[7] The patient was fully aware of the critical nature of his condition, a fact reinforced by his general deterioration over the first week. Dyspnoeic at rest and struggling to sit or eat unassisted, he continued to decline blood product on numerous occasions despite extensive counselling. As a medical team, we involved our haematologists to impress upon the patient both the need for blood product and the fact that use of an HBOC may not constitute a solution.

His ‘informed consent’ remained a debatable concession. The patient in extremis cannot always judge whether the burden and inconvenience of participation in novel research is justified. Many people will take any risk (and pay any monetary price, triggering concerns about fraud) if told that the alternative is death. Their incapacity to see and accept their situation is precisely what occasions the need for protecting them.[8] Furthermore, how can the patient understand the risks of using experimental treatment when there are no relevant scientific data to discuss or explain? While trial data may exist, they are usually not specific enough to adequately guide treatment.[5]The principle of benevolence and non-maleficence are crucial concepts when considering experimental medicine. Each cannot be explored in isolation. Benevolence is the principle suggesting that physicians have an obligation to do everything in their power to help their patients by preventing death or improving quality of life or both.[9] Non-maleficence suggests physicians should also do all within their power to avoid harming their patient. ‘Harm’ being considered physical, psychological or spiritual in nature.[9] But how is one to decide which principle carries more weight? Does autonomy trump non-maleficence? Does beneficence mean one must order experimental products for every patient? To what extremes is a physician expected to go in order to fulfill his moral obligation?

No such thing as simple Many moral problems in medicine involve tensions between con­ flicting moral obligations. The tension between the beneficence (wanting to help the patient) and non-maleficence (not wanting to give him undue side-effects) are not clear. In reality, clinical ethical problems are usually complicated. The principle approach is useful but not without flaws. Our course of action was justified, but not without flaws.[10,11]

CASE STUDY Virtue ethics So how does one make the ‘right’ decision? How does one know if one’s decision was ‘right’? And a more philosophical question – how can we become physicians who make the ‘right’ decisions?

Physicians make ethical decisions every day. A bed may be allocated in ICU according to the principle of utilitarianism but respect a person’s right to decline treatment according to the four principles.[5] We may not even be conscious of the process. Knowing the theory is not the same as implementing it.[10] Virtue ethics suggests that the physician is not simply an inanimate observer in the process of ethical deliberation. They are the living body of ethical practice. The character of the physician will ultimately determine which ethical decisions are made – and if they are made at all.[12] Virtue ethics, dating back to Socrates, Aristotle and Plato, was the primary guiding moral theory before the 17th century. Aristotle believed that certain virtues were necessary to achieve ‘the good life’.[13] The ‘good life’ – achieving a state of eudaimonia is ‘happiness which is deep, lasting and worth having’. By practising good habits, the physician can reach a state where virtuous behavior is habitual.

The reward, according to Aristotle, is that we will exist in a state of eudaimonia. For the rest of us, it means we can sleep at night.[13,14] It makes sense. Most, perhaps all, of us want to be good people – or at least good physicians. We definitely want to make good decisions.

So what makes a good doctor? This is the task that Pellegrino and Thomasma[15] undertake in For The Patient’s Good. They argue that the core function of medicine is to improve the well-being of patients. Working toward the patient’s good requires a broad range of skills as well as concern for their autonomy and welfare. Good physicians are physicians who do this well. The function of medicine, therefore, implies a number of virtues and skills that will be mastered by a good physician.[14] Beuchamp and Childress[5] suggest these virtues are: trustworthiness, integrity, discernment, compassion and conscientiousness.

Thankfully virtue ethics suggests that we all have the capacity to become ‘virtuous’. These are skills which can be acquired and strengthened. Through repetition the virtues become integral to the character of the physician.[12,14] Virtue ethics in practice Understanding moral theory, the management of this patient had two equally compelling options.

The dilemma: To give or not to give HBOC? We applied the ‘virtues’ in analysing the situation.

Compassion: According to Beuchamp[5] this is, ‘…an active regard for another’s welfare with an imaginative awareness and emotional response of deep sympathy, tenderness and discomfort at another’s misfortune of suffering’. The faith and temperament of this patient did elicit an emotional response. It created the desire to find a solution.

Trustworthiness: ‘Able to be relied on to do or provide what is needed or right’.[16] The patient had exposed his core spiritual beliefs to his doctors. He believed that we would do everything possible to improve his wellbeing while respecting his treatment refusal.

Discernment: The ability to bring ‘sensitive insight, understanding and wise judgment’, to a situation.[16] In this case the understanding that the patient may well die despite every effort, including use of HBOC. Furthermore the insight that the patient was of sound mind and not swayed by external influences in making his treatment decisions.

Integrity: ‘The quality of being honest and fair’.[16] The discussion regarding use of HBOC was forthright. There was no false hope given regarding the product.

Conscientiousness: ‘Governed by or conforming to the dictates of conscience’.[16] Conscientiousness led to concern about both giving the HBOC and not giving the HBOC. Once the possibility of acquiring HBOC became feasible, compassion was the single strongest motivator swaying the decision.

Balancing virtue ethics Virtue theory explains how we can become more moral and perhaps why we would choose to do so. Virtue ethics does not replace bioethics.

Rather the virtuous physician would be proficient in moral theory.[10,12] Where more than one course of action is ethically justifiable, moral theory is unable to bridge the gap.

Virtue ethics suggests that the best decision to be made in this scenario is the one made by the virtuous physician. If one is not yet the virtuous physician – applying the virtues can provide clarity.[12] We are fortunate to have among us virtuous physicians. The rest of us continue to strive to achieve this disposition. Without virtue, ethics is simply an obligation. As a profession we owe more to our patients than doing the bare minimum. We also need to do what is right.

References 1. Republic of South Africa. South African Census 2001. Pali Lehohla; Stats SA. South Africa: Stats SA. 2003. http://www.statssa.gov.za/census01/html/default. asp (accessed 10 January 2013).

2. Chris Hani Baragwanath Hospital. Home Page. Johannesburg: Chris Hani Baragwanath Hospital, 2013. http://www.chrishanibaragwanathhospital.co.za/ departments/internal_medicine (accessed 17 January 2013).

3. Chen J, Scerbo M, Kramer G. A review of blood substitutes: Examining the history, clinical trial results and ethics of hemoglobin-based oxygen carrier. Clinics 2009;64(8):803-813. [http://dx.doi.org/10.1590/S1807-59322009000800016] 4. Hemopure. South Africa OPK Biotech. South Africa: Hemopure, 2013. http:// www.hemopure.co.za (accessed 17 January 2013).

5. Beauchamp T, Childress JF. The principles of biomedical ethics. 6th ed. New York: Oxford University Press, 2008: 336-343.

6. Loutfy M. Changing the Rules in Times of Crisis: Do Desperate Times Allow Desperate Measures? Virtual Mentor. 2006;8(4):214-218. [http://dx.doi. org/10.1001/virtualmentor.2006.8.4.ccas4-0604] 7. United Nations Educational, Scientific and Cultural Organization (UNESCO).

Universal Declaration on Bioethics and Human Rights; Adopted by acclamation on 19 October 2005 by the 33rd session of the General Conference of UNESCO. Paris: UNESCO, 2005. unesdoc.unesco.org/images/0014/001461/146180E.pdf (accessed 17 January 2013).

8. Schuklenk U, Lowry C. Terminal illness and access to Phase 1 experimental agents, surgeries and devices: Reviewing the ethical arguments. Br Med Bull 2009;89(1):7-22. [http://dx.doi.org/10.1093/bmb/ldn048] 9. Steven Pantilat. Ethics Fast Facts. San Francisco: UCSF School of Medicine, 2008. http://missinglink.ucsf.edu/lm/ethics/Content%20Pages/fast_fact_informed_ consent.htm (accessed 10 January 2013).

10. Clarke DL. Moral principlism alone is insufficient, and traditional moral theories remain important for practical ethics. S Afr J BL 2009;2(2):54 11. Campbell AV. The virtues (and vices) of the four principles. J Med Ethics 2003;29(5):292-296. [http://dx.doi.org/10.1136/jme.29.5.292] 12. Gardiner P. A virtue ethics approach to moral dilemmas in medicine. J Med Ethics 2003;29(5):297-302. [http://dx.doi.org/10.1136/jme.29.5.297] 13. Aristotle. Nicomachean Ethics. New York: Dover Thrift Editions, 1998.

14. Sherman N. The fabric of character. Oxford: Oxford University Press, 1989:7.

15. Pellegrino ED, Thomasma DC. The Virtues in Medical Practice. New York: Oxford University Press, 1994.

16. Merriam-Webster Inc. Merriam-Webster Dictionary. Massachusetts: MerriamWebster Inc, 2015. http://www.merriam-webster.com (accessed 17 January 2013).

S Afr J BL 2015;8(2):48-49. DOI:10.7196/SAJBL.434

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EDUCATION AND TRAINING

Nanotechnology in medicine and healthcare: Possibilities, progress and problems J Gardner, MScMed Steve Biko Centre for Bioethics, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa Corresponding author: J Gardner (Jillian.Gardner@wits.ac.za)

Nanotechnology or nanoscience covers the investigation, design, manipulation, precision placement, measurement, modelling or fabrication of matter, structures, devices and systems that exist at the nanoscale – essentially at the atomic and molecular size levels. Nanotechnology has the potential to change the way we address some of the world’s most critical development problems. In 2005, the United Nations (UN) Millennium Project’s Taskforce on Science, Technology and Innovation concluded that nanotechnology can contribute to the attainment of the Millennium Development Goals (MDGs), specifically, the goals to reduce child mortality, improve maternal mortality and combat HIV/ AIDS, malaria and other diseases. Health, specifically improved primary healthcare, is one of six focus areas highlighted in South Africa’s National Nanotechnology Strategy (NNS), where nanotechnology can offer the most significant benefits for the country. Nanotechnology can revolutionise the practice of medicine and the delivery and accessibility of healthcare. However, despite the significant benefits of nanotechnology, there are problems that could prevent it from being widely accepted. The qualities that make nanotechnology so appealing are also those that give rise for concern. In particular, there are uncertainties about its potential impact on human health, the environment and societies in general, along with the concern that nanotechnology, much like genetic engineering or modification, is ‘messing’ with the buil­ding blocks of nature and is therefore, ‘unnatural’ even unethical. This article considers these concerns and concludes that there is nothing intrinsically good or bad about nanotechnology, but that its acceptability will depend largely on how it is used and introduced into society.

S Afri J BL 2015;8(2):50-53. DOI:10.7196/SAJBL.432

Nanotechnology or nanoscience covers the investigation, design, manipulation, precision placement, measurement, modelling or fabrication of matter, structures, devices and systems that exist at the nanoscale – essentially at the atomic and molecular size levels.[1,3] The sizes of objects in nanotechnology are measured in units known as nanometres (nm).[3,4] The size of one nano­ metre is invisible to both the human eye and most microscopes.[5] On a comparative scale, if a marble were a nanometre, then one metre would be the size of the Earth,[6] a sheet of paper about 100 000 nm thick,[7] and a human hair approximately 80 000 - 100 000 nm wide.[8] Nanotechnology as defined by size, is, naturally, very broad, and allows for, among other things, the manipulation of materials on an atomic or molecular scale, thus enabling a new paradigm of science and technology which sees different fields of science and technologies converging at the nanoscale.[9] Nanotechnology is also known as a refining or enabling technology because of its capability to enhance existing technologies.[10] It is not necessarily a distinct area of science but rather a radical redefinition of the combined power of science and technology.[11] The application or use of nanotechnology in medicine and healthcare is known as nanomedicine.[12,13]

Applications of nanotechnology in medicine and healthcare Nanotechnology has the potential to change the way we address some of the world’s most critical development problems. In 2005, the United Nations (UN) Millennium Project’s Taskforce on Science, Technology and Innovation concluded that nanotechnology can contribute to the attainment of the Millennium Development Goals (MDGs), specifically, the goals to reduce child mortality, improve

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maternal mortality and combat HIV/AIDS, malaria and other diseases.[2,11,14] Health, specifically improved primary healthcare, is one of six focus areas highlighted in SA’s National Nanotechnology Strategy (NNS), where nanotechnology can offer the most signi­ ficant benefits for the country.[15] Nanotechnology has a significant range of potential biomedical applications and is being used to develop nanodevices and structures to prevent, treat and monitor diseases. Some of the principal appli­ cations of nanomedicine are in the areas of diagnostics and testing, drug discovery, development and delivery, tissue engineering, medical instruments and devices and surgical treatments.[1,14,16]

Disease screening and diagnosis Nanotechnology offers a multitude of options for detecting, diag­ nosing, monitoring and treatment of disease. For example, semi­ conducting nanocrystals called quantum dots can enhance biological imaging for medical diagnostics.[7,8,17,18] When illuminated with ultraviolet light, they emit a wide spectrum of bright colours that can be used to locate and identify specific kinds of cells and biological activities. These crystals offer optical detection up to 1 000 times better than conventional dyes used in many biological tests, such as MRIs, and render significantly more information.[7,8] Scientists are exploring the use of nanotechnology in the development of portable point-of-care diagnostic kits, which would enable the rapid and accurate identification of multiple diseases simultaneously.[19]

Drug development and delivery systems Nanotechnology can also be used to develop new forms of therapy and drug delivery systems.[20] Through the use of nanotechnology,

EDUCATION AND TRAINING drugs can be delivered via nanovehicles to specific areas in the body with greater precision.[21] The drugs can also be formulated so that the active ingredient better permeates cell membranes, reducing the required dose.[3,11] Nanotechnology could therefore revolutionise drug delivery by overcoming challenges such as drug toxicity, how to sustain the release of drugs in the body and improving bioavailability – the amount of active ingredient per dose. Because of its potential to decrease drug administration time and minimise the side-effects of drugs, patient compliance could improve, thus contributing to the successful management and treatment of disease.

Tissue engineering The tools and techniques of nanotechnology are also increasingly playing a role in advancing research in areas such as toxicogenomics, synthetic biology, regenerative medicine, and genetic modification.[1,10] For instance, research is underway to use nanotechnology to spur the growth of nerve cells, e.g. in damaged spinal cord or brain cells. In one method, a nanostructured gel fills the space between existing cells and encourages new cells to grow.[7,8] Another study is exploring the use of nanofibres to regenerate damaged spinal nerves.[7,8]

Other applications Other applications of nanotechnology in medicine and healthcare include the use of nanoparticles in wound dressings and antiseptic coating for surgical implements.[1,14,16] Nanotechnology is also likely to make novel forms of information management and medical communication possible e.g. patients might have medical information or records inserted under their skin, as is already done with radio frequency identification (RFID) tags.[1,11]

Concerns about nanotechnology Nanotechnology can revolutionise the practice of medicine and the delivery and accessibility of healthcare. However, despite the significant benefits of nanotechnology, there are problems that could prevent it from being widely accepted. The qualities that make nanotechnology so appealing are also those that give rise for concern.

In particular, there are uncertainties about its potential impact on human health, the environment and societies in general, along with the concern that nanotechnology, much like genetic engineering or modification, is ‘messing’ with the building blocks of nature and is therefore ‘unnatural’, even unethical.

Concerns about human health, safety and rights Since a nanotechnology-based object can be so small, how can we tell where it is, or where it’s going? Could engineered nanoparticles accumulate without our knowledge in the environment, our water supplies, crops, and bodies? What would the consequences of this be?[11] Very little is known about the relationship between the exposure to engineered nanoparticles and health effects, in contrast with the large number of epidemiological studies on larger particles.[20] The properties of nanoparticles are not governed by the same physical laws as larger particles, but by quantum mechanics.[22] This means that the physical and chemical properties, e.g. colour, strength, chemical reactivity, solubility and toxicity can be quite different from those of larger particles of the same substance.

The extremely small size of nanoparticles also means that they are much more readily taken up by the human body than larger particles. They could cause overload on cells that ingest and destroy foreign matter, thereby triggering stress reactions that lead to inflammation and weaken the body’s defence against other pathogens. Apart from what happens if non-degradable or slowly degradable nanoparticles accumulate in organs, another concern is their potential interaction with biological processes inside the body.

Because of their large surface, nanoparticles on exposure to tissue and fluids will immediately absorb onto their surface some of the macromolecules they encounter. This may, for instance, affect the regulatory mechanisms of enzymes and other proteins.[20] Although there is some research on the toxicity of nanotechnology and its effects on human health, such research is still rare.[1,2,20] Data concerning the behaviour and toxicity of nanoparticles come mainly from studies on inhaled nanoparticles and from pharmaceutical studies, in which formulations involving nanoscale components are used to solve problems dealing with the insolubility of drug formulations and for drug delivery.[20] Studies suggest that some nanoparticles may have unintended harmful consequences. For instance, inhaling airborne nanoparticles and nanofibres may lead to a number of pulmonary diseases, e.g. fibrosis,[23] and some forms of carbon nanotubes could be as harmful as asbestos, which is a carcinogen, if inhaled in sufficient quantities.[24,25] The large number of variables that influence behaviour and toxicity means that it is difficult to generalise about health risks associated with exposure to nanomaterials. Moreover, because the physical and chemical properties of nanoparticles can be quite different from those of larger particles of the same substance, risk assessment paradigms that have been developed for bulk materials may not be valid for nanoparticles and nanostructures.[1,26] Therefore each new nanomaterial or application of nanotechnology must be assessed individually, on a case-by-case basis and all material properties must be taken into account.[1,20] This suggests that different nanotechnology applications can have very different ethical profiles. For instance the application of nanotechnology in disease detection and treatment raises different issues to the application of nanotechnology in the development of biological weapons.

To discuss the ‘ethics of nanotechnology’ in general is, therefore, not particularly productive. One bionanotechnology might be just, sustainable, and likely to contribute to human well-being, while another might be unjust, unsustainable, reckless, and unnecessary.

Nevertheless nanotechnology, due to its broad applications in medicine and healthcare is implicated in a broad range of bioethical issues including informed consent, justice, and access to healthcare, privacy of medical information, end-of product disposal and human subjects’ protections.[1] Nanomedicine will likely transform the organisation and prac­tice of medicine and healthcare. In the field of medicine and health­ care, advances in nanotechnology can be combined with other technologies, including information technology and biotechnology, increasing nanotechnology’s potential to displace health measures and systems where regulation has been worked out over many years.

One example is the development of computer-controlled molecular tools that may not require the direct intervention of a medical practitioner.[3] Some functions could therefore be relegated to other staff; as has been done, e.g. in the case of permitting lay counsellors

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EDUCATION AND TRAINING to conduct HIV testing and counselling or enabling registered nurses to test for and prescribe treatment for HIV independently in SA. In the context of research the invisible nature of nanotechnology makes it easier to ‘hide’ nanotech products, and to invade privacy or carry out procedures that require consent, without the patient’s knowledge.

This may be particularly pertinent with regard to clinical trials of nanodrugs carried out in developing countries.[3]

Concerns about the impact on the environment Although there are very few published data on the effects of nanoparticles on environmental species,[27] it is reasonable to assume that observations can be extrapolated to environmental species. There is, for instance, evidence that bacteriostatic silver nanoparticles used in socks to reduce foot odour are being released in the wash.[28] These particles are then flushed into the waste water stream and may destroy bacteria which are critical components of natural ecosystems, farms and waste treatment processes.[29] This perhaps explains why a report by the UK Royal Society and Royal Academy of Engineering recommends that nanoparticles and nanotubes be treated as hazardous waste.[4] Even if nanotechnology is perceived to be no more than small mutations, it is recognised, from an industrial ecology perspective,[30] that similarly to most large-scale production the production of nanomaterials requires energy,[31,32] as well as feedstock chemicals[33] some of which are toxic to humans and other organisms. Nanomanufacturing methods therefore raise the question of whether or not the benefits of using nanotechnology as an alternative to existing technologies really outweigh the impacts of producing nanomaterials, with reference to energy requirements, environmental impacts and disposalrelated costs and risks.[2]

Justice-related concerns Critics argue that investment in nanotechnologies by resource-poor countries is a waste of money, since most people in those countries don’t even have access to basic healthcare services.[34] Moreover, even if developed, how accessible will this type of technology be to the average citizen? Will it be limited to specific socioeconomic groups that can afford it or will it be available to everyone? If nanotechnology does not seek to benefit wider society by responding to social needs it could widen the gap between rich and poor people and countries because of their different capacities to develop and exploit nanotechnologies.[11]

Concerns about the unnaturalness of nanotechnology Nanotechnology enables scientists to deconstruct and remake the world (‘nature’) from the atom up, using atomic level manipulation to transform and construct a wide range of new materials, devices, living organisms and technological systems. Critics may therefore argue that it is unnatural, hence immoral. Such arguments, however, simply equate the ethical with what is natural, and fail to appreciate that humans are themselves part of nature, who have and continue to, often, interfere with nature. The natural-unnatural division is not in itself of intrinsic moral significance, otherwise much of medicine, for instance, would be immoral. Humans intervene in nature all the time and usually for good moral reasons so there cannot be something

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inherently immoral about nanotechnology. Moreover, some people may see the responsible exercise of scientific skills as being the employment of God-given abilities.

As with other health technologies, there is nothing intrinsically good or bad about nanotechnology. It will depend on how it is used. An important component of responsible research and development (R&D) of nanotechnology is the consideration of the ethical, legal and social implications. How research and applications are introduced into society; how transparent decisions are; how sensitive and responsive policies are to the needs and perceptions of the range of stakeholders and how ethical, legal and social issues are addressed will determine public trust and future innovation driven by nanotechnology. The successful introduction of a new technology requires careful attention to the interactions between the technology and society.[35] Negative public opinion can obstruct the application of technological advances.[36] The public backlash against genetically modified foods effectively stalled a new industry in many parts of the world.[37] The scientific community should continually engage the public in proactive dialogue to promote awareness and informed decision-making about the safety, ethics and regulation of nanotechnology.[38,39]

Conclusion Despite the significant benefits that the application of nanotechno­ logy in medicine and healthcare promises, there are concerns about its future implications. Nanotechnology may be able to create many new materials and devices with a vast range of applications that could enhance human welfare. On the other hand, what is technically possible and what is ethically appropriate is a matter of heated debate. Nanotechnology raises many of the same issues as genetically modified foods.[34] These include concerns about the toxicity and environmental impact of nanomaterials, and their potential effects on global economics – issues which threaten to hamper the successful implementation and uptake of nanotechnology. How nanotechnology research and development and the marketing of products might impact human living conditions as well as beliefs, values and social relationships is, as yet, an unanswered question.

Therefore the unknown and potentially substantial harms and benefits it represents to social, cultural, and material life warrants careful ethical reflection. Research funded by public money must benefit society. Health policies are not just about curing disease, but about keeping people healthy. In developing countries the main health problems have socioeconomic and lifestyle causes, which cannot be solved by technology alone, however sophisticated it may be. In developing countries nanotechnology for health should therefore improve living conditions, not just treat disease.[40] There are considerable difficulties in assessing the health, envir­ onmental and ecological impact of nanotechnology because of uncertainties and knowledge gaps, largely due to the natural complexity of ecological cycles, and the impossibility of directly experimenting with the natural environment. Knowledge about the hazard and exposure risk of nanoparticles to the ecology is therefore slim.[41] Therefore the proper question for regulators and policymakers to ask of nanotechnology is not ‘Is it safe?’ but rather, ‘How can we make nanotechnology safer?’[41] It is necessary to identify the acceptable risk threshold and to balance the potential harms while respecting the values at stake.[11]

EDUCATION AND TRAINING References 1. Michelson ES, Sandler R, Rejeski D. Nanotechnology. In: Crowley M ed. From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policy Makers, and Campaigns. Garrison, NY: The Hastings Center.

2008:111-116.

2. Musee N, Brent AC, Ashton PJ. A South African research agenda to investigate the potential environmental health and safety risks of nanotechnology. S Afr J Sci 2010;106:3-4. [http://dx.doi.org/10.4102/sajs.v106i3/4.159] 3. Shetty P. Nanotechnology for health: Facts and figures. London: Science and Development Network (SciDev.Net); 2010. http://www.scidev.net/global/health/ feature/nanotechnology-for-health-facts-and-figures (accessed 2 November 2015).

4. The Royal Society and Royal Academy of Engineering. Nanoscience and Nanotechnologies: Opportunities and uncertainties. London. The Royal Society and Royal Academy of Engineering 2004:13-57.

5. Wetter K. Big continent and tiny technology: Nanotechnology and Africa. Pambazuka News, 2010;499. http://www.pambazuka.net/en/category/features/67525 (accessed 2 November 2015).

6. Fleming AJ, Leang KK. Design, Modeling and Control of Nanopositioning.

Switzerland: Springer International Publishing. 2004:1-15.

7. United States Government. United States National Nanotechnology Initiative.

Frequently Asked Questions. Arlington: United States Nanotechnology Initiative, 2015. http://www.nano.gov/nanotech-101/nanotechnology-facts. (accessed 2 November 2015).

8. United States Government. United States National Nanotechnology Initiative.

Size of the nanoscale. Arlington: United States Nanotechnology Initiative, 2015 http://www.nano.gov/nanotech-101/what/nano-size. (accessed 2 November 2015).

9. Saini R, Saini S, Sharma S. Nanotechnology: The Future Medicine. J Cutan Aesthet Surg 2010;3(1):32–33. [http://dx.doi.org/10.4103/0974-2077.63301] 10. South African Agency for Science and Technology Advancement.

Nanotechnology and Health. Pretoria: South African Agency for Science and Technology Advancement. February 2011. Available at http://www.npep.co.za/ pdfs/articles-and-factsheets/Health/fact%20sheet.pdf. (accessed 2 November 2015).

11. Gardner J, Dhai A. Nanotechnology and Water: Ethical and Regulatory Considerations. In: Ajay Kumar Mishra, ed. Application of Nanotechnology in Water Research. Massachusetts. Scrivener Publishing LLC, 2014:1-20.

12. Freitas RA Jnr. What is Nanomedicine? Nanomedicine: Nanotech Biol Med 2005;1(1):2-9. [http://dx.doi.org/10.1016/j.nano2004.11.003] 13. Moein Moghimi S, Christy Hunter A, Clifford Murray J. Nanomedicine: Current status and future prospects. The FASEB Journal 2005;19(3):311-330. [http:// dx.doi.org/10.1096/fj.04-2747rev] 14. Salamanca-Buentello F, Persad DL, Court EB, Martin DK, Daar AS, Singer PA. Nanotechnology and the developing world. PLoS Med 2005;2(5):e97. [http:// dx.doi.org/10.1371/journal.pmed.0020097] 15. Republic of South Africa. Department of Science and Technology (DST). The national nanotechnology strategy. Pretoria: Government Gazette, 2007. http:// www.dst.gov.za/publications-policies/strategies-reports/reports/Nanotech.pdf. (accessed 2 November 2015).

16. Duncan R. The dawning era of polymer therapeutics. Nat Rev Drug Discov 2003;2(5):347-360 [http://dx.doi.org/10.1038/nrd1088] 17. Maclurcan DC. Nanotechnology and developing countries Part 1: What possibilities? Online Journal of Nanotechnology 2005;1. [http://dx.doi. org/10.2240/azojono0103] 18. Mathuria JP. Nanoparticles in tuberculosis diagnosis, treatment and prevention: A hope for the future. Dig J Nanomater Biostruct 2009;4(2):309-312.

19. Yen C-W, de Puig H, Tam JO, et al. Multicolored silver nanoparticles for multiplexed disease diagnostics: Distinguishing dengue, yellow fever, and Ebola viruses. Lab on a Chip 2015;15(7):1638-1641). [http://dx.doi.org/10.1039/c5lc00055f ]

20. Scientific Committee on Emerging and Newly Identified Health Risks (SCENIHR). The appropriateness of existing methodologies to assess the potential risks associated with engineered and adventitious products of nanotechnologies. Luxembourg: SCHENIHR, 2006. http://ec.europa.eu/health/ph_risk/committees/04_scenihr/docs/ scenihr_o_003b.pdf. (accessed 2 November 2015).

21. Mamo T, Moseman EA, Kolishetti N, et al. Emerging nanotechnology approaches for HIV/AIDS treatment and prevention. Nanomedicine 2010;5(2):269-285. [http://dx.doi.org/10.2217/nnm.10.1] 22. Cameron N, Mitchell E. Nanoscale: Issues and Perspectives for the Nano Century.

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23. Byrne JD, Baugh JA. The significance of nanoparticle-induced pulmonary fibrosis.

Mcgill J Med 2008;11(1):43-50.

24. Liu X, Vinson D, Abt D, Hurt RH, Rand DM. Differential toxicity of carbon nanomaterials in drosophila: Larval dietary uptake is benign, but adult exposure causes locomotor impairment and mortality. Environ Sci Techno 2009;43(16): 6357–6363. [http://dx.doi.org/10.1021/es901079z] 25. Kipen M, Laskin D. Smaller is not always better: Nanotechnology yields nanotoxicology. Am J Physiol Lung Cell Mol Physiol 2005;289(5):L696-L697. [http://dx.doi.org/10.1152/ajplung.00277.2005] 26. Hunt G, Mehta M. Nanotechnology: Risk, ethics, law. London: Earthscan. 2006; 3-45.

27. Colvin VL. The potential environmental impact of engineered nanomaterials. Nat Biotechnol 2003;21(1):1166-1170. [http://dx.doi.org/10.1038/nbt875] 28. Lubick N. Silver socks have cloudy lining. Eviron Sci Technol 2008;42(11):3910.

29. Murray RGE. A perspective on S-layer research. In: Beveridge TJ, Koval SF, eds.

Advances in Bacterial Paracrystalline Surface Layers. USA: Springer. 1993:3-9. [http://dx.doi.org/10.1007/978-1-4757-9032-0] 30. Brent AC, Oelofse S, Godfrey L. Advancing the concepts of industrial ecology in South African institutions. S Afr J Sci 2008;104(1/2):9-12.

31. Khanna V, Bakshi BR, Lee LJ. Carbon nanofiber production: Life cycle energy consumption and environmental impact. J Ind Ecol 2008;12(3):394-410. [http:// dx.doi.org/10.1111/j.1530-9290.2008.00052.x] 32. Kushnir D, Sandén BA. Energy requirements of carbon nanoparticle pro­ duction. J Ind Ecol 2008;12(3):360-375. [http://dx.doi.org/10.1111/j.15309290.2008.00057.x] 33. Wardak A, Gorman ME, Swami N, Deshpande S. Identification of risks in the life cycle of nanotechnology-based products. J Ind Ecol 2008;12(3):435-448. [http:// dx.doi.org/10.1111/j.1530-9290.2008.00029.x] 34. Court E, Daar AS, Martin E, Acharya T, Singer PA. Will Prince Charles et al. diminish the opportunities of developing countries in nanotechnology? Nanotechweb 2004; Jan 28. http://nanotechweb.org/cws/article/indepth/18909. (accessed 2 November 2015).

35. Keller K. Nanotechnology and society. J Nanoparticle Res 2007;9(1):5-10. [http:// dx.doi.org/10.1007/s11051-006-9193-3] 36. Service RF. Nanotechnology grows up. Science 2004;304(5678):1732-1734. [http://dx.doi.org/10.1126/science.304.5678.1732] 37. Macoubrie J. Nanotechnology: Public concerns, reasoning and trust in government. Pub Understand Sci 2006;15(2):221-241. [http://dx.doi.org/10.1177/0963662506056993] 38. Arnall AH. Future Technologies, Today’s Choices: Nanotechnology, Artificial Intelligence and Robotics – A Technical, Political and Institutional Map of Emerging Technologies. London: Greenpeace Environmental Trust 2003. http:// www.greenpeace.org.uk/MultimediaFiles/Live/FullReport/5886.pdf. (accessed 2 November 2015).

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MSc Med COURSE

MSc Med Bioethics and Health Law course for 2016 The Steve Biko Centre for Bioethics, at the University of the Witwatersrand in Johannesburg, will be offering a Masters course in bioethics and health law next year.The aim of the course is to train bioethics and medical law experts who will display skill and proficiency in the fields of bioethics and health law. The course aims to develop capacity and excellence in the ethical and legal analysis of issues arising in healthcare and research. Graduates will be able to apply their knowledge to the evaluation and management of bioethical and medico-legal problems and to propose solutions that are ethically acceptable and within the constraints of the law.

Course structure The course is in two parts. Part 1, the coursework component, entails the successful completion of five taught units. Part 2 consists of a written research report of at least 15 000, but no longer than 20 000 words in length. Part 1 constitutes 50% of the degree and Part 2 the remaining 50%.

The units are taught in block release form. The block release for each is five days. After the teaching blocks have been completed, students are expected to produce written work in the form of short answer questions and essays. These must be submitted by the specified submission dates before the end of July. Successful completion of the units and the written research report will lead to the degree of Master of Science in Medicine in the field of Bioethics and Health Law. All the units are also offered as Certificate of Competency Courses.

Brief description of the units (Part 1) Foundations of bioethics

This unit is designed to enable you to analyse and evaluate issues in bioethics within the context of a solid ethical framework. Major theoretical, non-theoretical and other ways of viewing the world will be taught. The course intends to provide a foundational understanding of the relationship between concepts, logic and argumentation and fallacies of reasoning.

Foundations of health law This unit will cover sources of South African law, the Constitution, statutory and common law in the context of health. Criminal, civil and family law and their interaction with health will be explored. The National Health Act will be discussed as well as the amendments to the Medicines Act. International law in relation to health is included in this unit.

Advanced research ethics This unit introduces and explains a number of topical ethical issues in research ethics, including what constitutes unethical research, standards of care in a study, authorship guidelines and plagiarism. The role and modus operandi of Research Ethics Committees are outlined.

Finally, clearly articulated standards of good clinical practice in research relevant to local realities and contexts are provided. These include obtaining valid informed consent, considering specific subgroups, standards of care for trial participants, access to study medications following completion of a clinical trial, issues pertaining to incentives

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affecting researchers and participants, releasing and publishing research results and the implementation of research findings.

Advanced health ethics This unit addresses a number of important issues in bioethics and health law critically and in depth. Three to four important issues will be focused on each year relating to ethical and medico-legal issues in clinical contexts, reproductive health, policy and public health, resource allocation, genetics, health and human rights, environmental bioethics and others. Students will learn how to apply the ethical theories, ethical and legal principles, and their critical and analytical skills learnt in the foundations units to specific ethical and medico-legal questions.

Research methods This course will provide students with rigorous training in indepen­ dently designing, implementing and evaluating research, including research design, sampling procedures and data analysis. It will cover both research projects of an essentially normative and legal nature, as well as empirical projects (qualitative or quantitative) that include a normative and legal element. Students will be trained in every part of the research cycle (question formulation; literature review; use of secondary sources; primary and secondary argumentation; ethical and legal analysis; methodology to collect and analyse primary data), including the writing of reports. In terms of values and attitudes, the course aims to instil in students a commitment to ethical research.

The course will prepare them to produce a research protocol/proposal suitable to their project, and ultimately a research report.

Brief description of the research report (Part 2) Students apply what has been taught in the research methods course, as well as the other units in the programme, and carry out a supervised research study on an approved topic. This research project may be either essentially normative and legal in nature, or empirical with a normative and legal component.

Course duration Fulltime students complete all five units and their research report in their first year of registration. Part-time students are advised to complete the four units ‘Foundations of Bioethics’, ‘Foundations of Health Law’, ‘Advanced Research Ethics’ and ‘Advanced Health Ethics’ in their first year. In their second year they should complete the ‘Research Methods’ Unit and their Research Report.

Closing date for applications is 30 November 2015.

For more information about the Centre and the MSc Med (Bioethics and Health Law) course, please visit the website: http://www.wits.ac.za/bioethics or contact Ms Jillian Gardner +27 11 717 2719/2635. E-mail: Jillian.Gardner@wits.ac.za or Ms Tebogo Dithung +27 11 717 2635.

Email: Tebogo.Dithung@wits.ac.za

BOOK REVIEW

Persons, Parts and Property. How Should We Regulate Human Tissue in the 21st Century?

By Imogen Goold, Kate Greasly, Jonathan Herring and Loane Skene. Pp Xxiv + 309. Hart Publishing 2014. ISBN: 978-1-84946546-5 With rapid strides made in scientific and techno­ logical advances, it is inevitable that questions as to whether human body parts possess property rights have surfaced, especially over the past four decades.

This debate has been the subject matter of not only the courts (in particular, the Anglo-Australian courts), but also of academic litera­ ture, with interalia, legal academics, philosophers, ethicists, and sociologists contributing to the differing opinions on the issue. While court decisions and statutory regulation in some jurisdictions have resulted in some acceptance of limited property rights in some kinds of tissue, this has remained an extremely disputed subject on all sides of the body-ownership argument.

This book, which encapsulates the body-property debate, is a collection of work from legal academics, philosophers and sociologists from the UK and Australia who have looked into the detail of the merits or otherwise of a property approach to regulating human body parts. Broad doctrinal and theoretical questions as well as some of the highly specific legal issues are addressed. The book comprises sixteen chapters with the body as property debate covering many areas of concern including property rights in gametes, organ shortages, donations, sale of body parts, organ markets, black markets for body parts, and technological advancements with the use of cell lines, patenting issues, and research use of human tissue. Philosophical questions about the nature of the self and personal identity and how these affect decision-making and dealing with biomaterials, moral rights and the law relating to tissue, banking of tissue and umbilical cord blood and biobanking are also discussed and weighed up.

Three chapters provide constructive discussion on how to appropriately regulate human tissue in the context of its use in bio­medical research. Consideration is given as to how the property law model could apply here with specific focus on newly emerging technologies. A particular area of growing concern – biobanking

– is considered in detail in light of this practice becoming a major component of education and research in the healthcare sector. The ethical and legal concerns raised by this practice, including issues of consent, problems pursuant to unanticipated findings, and issues of governance, control and access are comprehensively debated.

Umbilical cord blood banking, also a key area because of particularly vexing issues involving the interplay of individual, public and private interests are considered from the perspective of how demands for umbilical cord blood from the various sectors can best be balanced.

The aim of online genetic testing services to create a research biobank from the tissue samples sent in by its customers and the epidemiological and lifestyle questionnaires is explored from the perspective of the commons. The notion of ‘corporate commons’ is used to examine whether restrictive genetic patenting could assist clinical biomedicine rather than impede it.

Regulatory questions are considered at a macro-level. The application of existing frameworks based on consent, privacy and the potential application of property principles is examined. In addition to these broad applications, some chapters focus on narrow detail of some legal matters like the law of gifts and the application of the concept of divesting abandonment. Throughout, it is stressed that the regulatory approach should take into account ethics and should be reflective of the many values inherent in human tissues and community principles and beliefs as well.

In this collection, areas of disagreement together with points of con­ ver­gence are investigated with the goal of reaching some consensus.

A number of potential approaches to the question on how to regulate human tissue are presented. This book, while it does not resolve the bodyproperty debate, is a step closer towards doing so. It is not just an anthology on comparative law, but it provides deeper philosophical, ethical and social insights into a highly contested field of interest and is written in an easy to understand, yet scholarly style. It is a valuable resource for students and scholars in health sciences, law and the humanities and would be a wise investment for university libraries globally.

Ames Dhai (amaboo.dhai@wits.ac.za) Editor

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CPD QUESTIONNAIRE

November 2015 True (A) of false (B) The 2015 Sexual Offences Amendment Act: Laudable amendment in line with the Teddy Bear clinic case: 1. Adolescents engaging in sexual activity with other adolescents will be prosecuted in line with current law.

2 The age of sexual consent is 16 years and has not been lowered to 12 years.

3. A 17-year-old who has consensual sex with a 13-year-old and impregnates her commits an offence because there is more than two years age gap between these parties.

Ethical guidelines for military-based health research: An unmet need in Africa: 4. The military is avoided as a site for research.

5. Military health personnel and soldiers work in complex cultural environments that often contrast with civilian life.

6. Decisions and orders from superior members of the armed forces could be applied to the entire troop easily because of the strong notion of respect for hierarchy and orders.

Moral challenges in managed care: 7. Managed healthcare is defined in Regulation 15 of the Managed Health Care Act. 8. In Beauchamp and Childress’s four main biomedical ethics principles, respect for autonomy has prima facie value over the other three principles.

The mandatory reporting of consensual, underage sex: Knowledge, practices and perspectives of social workers in KwaZulu-Natal: 9.

Recent research in South Africa has found that many young adolescents do not engage in a variety of sexual behaviours.

10. The Sexual Offences Amendment Act (No 5 of 2015), was signed into law in July 2015.

12. Globalised world economies are not inter-linked and interde­ pendent on each other.

Public health and social justice: Forging the links: 13. The generally accepted definition of public health is an approach to health that is concerned primarily with the health of communities or populations and delivered primarily by organisations or government rather than individuals.

14. The burden of disease and life expectancy is inextricably linked to poverty and persistent patterns of discrimination, most notably against women.

Stransham-Ford v. Minister of Justice and Correctional Services and Others: Can active voluntary euthanasia and doctor-assisted suicide be legally justified and are they consistent with the biomedical ethical principles? Some suggested guidelines for doctors to consider: 15. The Stransham-Ford case was a judgment by a single high court judge and the decision is binding on all courts in the country.

16. In law intention may be ‘actual’ or ‘eventual’.

Virtue ethics: Beyond moral theory: 17.

Many moral problems in medicine involve tensions between conflicting moral obligations.

18. V irtue ethics suggests that the physician is simply an inanimate observer in the process of ethical deliberation.

Nanotechnology in medicine and healthcare: Possibilities, pro­ gress and problems: 19. Nanotechnology has the power to revolutionise the practice of medicine and the delivery and accessibility of healthcare.

20. If nanotechnology does not seek to benefit wider society by responding to social needs it could widen the gap between rich and poor.

Public health, beneficence and cosmopolitan justice: 11. The recent Ebola epidemic highlights the fact that countries with under-developed health systems and limited resources cannot cope with a significant and sudden health threat.

A maximum of 6 CEUs will be awarded per correctly completed test.

The CPD programme for SAJBL will be administered by Medical Practice Consulting: CPD questionnaires must be completed online at www.mpconsulting.co.za After submission you can check the answers and print your certificate.

Questions may be answered up to 6 months after publication of each issue.

Accreditation number: MDB015/164/02/2015 (Ethics)

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