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EDITORIAL
The unhealthy and unlawful face of medical technology: a story of India For centuries in India, infant selection has included “neglect, strangulation, suffocation, and poisoning”.1 One reason for India’s steadfast adherence to these practices is the fact that it has conventionally been a patriarchal society.2 Infant sex-selection has increased further in the past few years due to the wide array of pre-natal sex selection technologies that are available on the market, conveniently allowing one to choose the sex of a child before birth.3 Some of the techniques used to determine the sex of an unborn child are sperm-sorting, pre-implantation genetic diagnosis and sex selective abortion facilitated by ultrasonography, amniocentesis and chorionic villus sampling. In a booklet compiled by the United Nations Population Fund (UNFPA) and Indian representatives, it was reported that the normal sex ratio for children aged between 0 to 6 years is 940-950 girls per 1000 boys.3 However, according to the booklet, the 2001 census showed only 927 girls per 1000 boys in India and it is reported that the ratio stands at a mere 770 in the Kurukshetra district of Haryana, 836 in Ahmedabad, and 846 in the South West district of Delhi – despite the fact that these regions are amongst the most prosperous in the country.3 In fact, The Lancet shockingly reported that in the past 20 years, some 500 000 female foetuses have been aborted every year in India, which amounts to 10 million missing girls from India’s population.4 Though there are no specific data to suggest that the above figures have been contributed by female foeticide using sex selection technologies, rather than the age-old practice of female infanticide, according to UNICEF, “A report from Bombay in 1984 on abortions after pre-natal sex determination stated that 7,999 out of 8,000 of the aborted fetuses were females”.5 If in 1984 itself female foeticide in India was pretty rampant, with the number of girls per 1000 boys having declined from 962 girls in 1981 to 945 girls in 1991 to an all-time low of 927 girls in 2001,3 it can be submitted that the increase in the latest sex selection technologies has made sex determination a significant contributor to the adverse child sex ratio in India.3 Furthermore, the fact that the child sex ratio has consistently declined though many awareness campaigns have been conducted nationwide in the past few decades, clearly indicates that increased awareness about the value of women as equal stakeholders in the society has not had any significant impact on the societal behavior of Indians when it comes to son preference. In Indian law, Section 4 of the Pre-conception and Pre-natal Diagnostic Techniques (Prohibition of Sex Selection) Act 1994 states that pre-natal diagnostic techniques can only be employed to detect chromosomal abnormalities, sex-linked genetic diseases and congenital anomalies and section 6(c) further provides that ‘no person shall, by whatever means, cause or allow to be caused selection of sex before or after conception’. More importantly section 5(2) provides that ‘no person including the person conducting’ the sex selection procedure shall ‘communicate to the pregnant woman concerned or her relatives or any other person the sex of the foetus’ in any manner. Section 18(1) of the Act provides that no genetic counselling centres, laboratories or clinics can be opened after the commencement of the PNDT Act unless they are registered under the Act. The question however is, can healthcare professionals who are working in genetic counselling centres, laboratories or clinics be blamed for the problem of adverse child sex ratio in India? To put it crudely, the obsession for son preference in India has made the practice of sex selection a very lucrative business for Indian medical professionals.2 Therefore, Chander in his paper claims that the above legislative prohibitions encourage doctors to do little more than fake their reports and covertly engage in sex determination’.2 Where corrupt medical professionals and son-crazed parents and relatives are in collusion with each other, it becomes virtually impossible to investigate the underlying reasons why pre-natal diagnostic techniques are employed in many cases. In fact, a Delhi doctor admitted that doctors usually employ code phrases like ‘the sky is blue’ and ‘you are in the pink of health’ to indicate male and female foetuses respectively, despite the legislative prohibitions in place.6 The undesirable behaviour of genetic healthcare professionals highlighted above can easily be classified as the height of all unhealthy healthcare behaviours. As the next upcoming generation of healthcare professionals, we should bear in mind the integral clause of the Hippocratic Oath that above all we should do no harm. We should also be aware that though the child sex ratio in England is nowhere close to the ones in countries like India and China’s.3 1ZA and IZB of the Human Fertilisation and Embryology Act 2008 provide that sex selection is not allowed except for medical reasons. Therefore, as future healthcare professionals, we should do everything in our power to abstain from selfish and irresponsible behaviours that have the potential to contribute to crises like the adverse child sex ratio in India. Rani Preatarshini Subassandran Section Editor for Health Law and Ethics
References 1. 2.
Illustration: Robert Hare
3. 4. 5. 6.
Andrea Krugman “Being Female Can be Fatal: An Examination of India’s Ban on Pre-Natal Gender Testing” 6 Cardozo J. Int’l & Comp. L. 215 (1998) at pg 221 Vineet Chander “It’s (Still) a boy… : Making the Pre-Natal Diagnostic Techniques Act an Effective weapon in India’s Struggle to Stamp out Female Feticide” 36 Geo. Wash. Int’l L. Rev. 453 (2004) at pg 455 “Missing: Mapping the Adverse Child Sex Ratio in India” India, Office of the Registrar General and Census Commissioner, June 2003 Shirish S Sheth, ‘Missing Female Births in India’, The Lancet, Vol. 367, Issue 9506, 21 January 2006, pg 185 – 186 Zeng Yi et al, ‘Causes and Implications of the Recent Increase in the Reported Sex Ratio at Birth in China’, Population and Development Review, 19:2 (June 1993) p. 297 Alison Wood Manhoff, “Banned and Enforced: An immediate answer to a problem without an immediate solution- How India can prevent another generation of Missing Girls,” 38 Vand. J. Transnat’l L. pg 889
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NEWS All authors are panellists of LSJM Health Law and Ethics
Greece bans smoking Marilena Smyrnioti A recent study of the European Commission placed Greece on the top of the list as the country with the highest percentage of smokers. The country’s Ministry of Health has been pushing to implement a ban outlawing smoking in all public places that will take effect from July 1st, 2009. Previous relevant laws had been widely ignored. Additionally, unlike most European Union countries, there has been no age limit on the purchase of tobacco – a policy that has been in the spotlight. In the face of the new deadline, the smoking debate has heated up. Smoking has been increasingly transforming from a primarily unhealthy behaviour to one that is deemed unethical: am I allowed to expose non-smokers to the harmful effects of cigarette smoke? Is it ethical to allow people to continue harming themselves with a known harmful substance? This is a debate that could go even further if we start wondering about the ethics of the banning campaigns: is it ethical to ban someone from a public place due to a ‘bad habit’? Is it ethical to force someone to change a habit? Whatever the view of the individual, more and more countries are introducing smoking bans and our minds are being made up for us. Torture and the medical profession at Guantanamo Bay Dhupal Patel The release of prisoners from Guantanamo Bay has been a primary objective in Barack Obama’s presidential campaign. The camps are infamous for their harsh conditions, deemed incompatible with human rights. Recent investigations carried out by the International Committee of the Red Cross surrounding the medical personnel at Guantanamo, have brought the institution into further disrepute. It is thought that members of the medical profession were witness to some of the forms of torture. Their role was to advise whether certain ‘treatments’ could continue or whether they ought to be stopped, based on the detainee’s medical statistics and observations. The example of ‘waterboarding’ is particularly contentious and refers to a particular form of torture that simulates drowning. In this instance, medics were on hand to measure the patient’s oxygen levels, using this as a guide as to whether the practice could continue or not. These findings have inevitably provoked outrage as such behaviour ultimately goes against the ethos of medicine which according to Hippocrates can be summed up as ‘to do good or to do no harm’. However, as more details emerge about the atrocities at this camp, it is likely that we will discover more practices that go against the very principles society should be abiding by.
There is now a new dilemma with respect to pharmaceutical companies and advertisement. The European Commission is proposing a law to allow drug companies to provide health information and advertise their products in the media to the general public. Although there was a resounding ‘no’ in the European Parliament when the law was first proposed in 2002, some feelings have since changed. The proposed main argument for the change is based on giving patients as much information as they want regarding their medications, therefore giving them the autonomy to make their own decisions. Critics also speculate that there is a change of opinion within the EU as the European pharmaceutical industry is falling behind the USA and Japan. Their opinion is that if we increase the information provided then we increase the demand for the products therefore giving the industry a boost. However many are against changing the law arguing that the information provided can never be independent or reliable. The fear is that if doctors and pharmacists can fall into the trap of being bribed to buy a product then there is a danger that consumers may also be bribed by such companies. After all, there is a difference between giving people information and trying to influence their decision making and promoting a product. Assisted suicide with Dignitas Rebekah Robson Dignitas is a Swiss euthanasia group that run the Dignitas Clinic near Lake Zurich in Switzerland. Founded in 1998 by Swiss lawyer Ludwig Minelli, it is rumoured that nearly 900 people have died at the clinic, 100 of which have been British. With the news of the assisted suicides of Peter and Penelope Duff (who both had terminal cancer) at the controversial Dignitas clinic, and with the former health secretary, Patricia Hewitt, calling for clarification in the law on assisted suicide, this debate has been pushed back onto the front pages. It is also rumoured that Lord Joffe is planning on introducing a new bill on assisted dying this year. Under the previous bill, only those with months to live would be given the privilege to choose to die, and so one wonders, even if a new bill were to become law, how many people would continue to end their lives at Dignitas nonetheless?
Proposed European relaxation of ban on advertisement of prescription drugs in the media Jennifer Davies There has been much debate in the media over the past few years There has been much debate in the media over the past few years about drug representatives using gifts and financial incentives to reel prescribing doctors and pharmacists into buying their company’s products. The overruling feeling was that it is unethical for doctors to be persuaded by drug companies into prescribing a drug and the decision should be made based on evidence from various reliable trials and studies.
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REVIEW
Allocating Organs: Two bodies, one heart Aziz Ahmed BSc (Hons) Year 3 Medicine, St. George’s University of London m0601115@sgul.ac.uk doi:10.4201.lsjm/hle.003
Organs are a scarce resource, particularly non-regenerative organs such as the heart. There are currently around 8,000 patients on the UK organ transplant list with around 400 annual deaths due to a lack of organs.1 With such a limited resource in such high demand it is imperative to establish the optimum methods of allocation for both the donated organ and the potential recipients. A limited resource
The ethical implications of using cadavers as an organ source are similar to those found in xenotransplantations. Again, are we going against natural law by removing organs from one individual and placing them in another? There are also some religious objections for example, followers of the Japanese religion Shinto believe that it is a crime to injure a dead body, leading to a refusal to donate or receive organs from cadavers.2
The UK currently has an opt-in system meaning an individual has to volunteer to be registered on the NHS organ donor register. There are currently 10,926,428 people listed in the UK as organ donors.1 Nearly eleven million potential donors seems like a lot, however most of these individuals will not die in conditions that allow for their organs to be used. There has been much controversial discussion recently about the introduction of an opt-out system, where individuals are automatically listed as potential donors. This system is already used in several countries, including France, Spain and Belgium.
Live donors are another possible organ source, such as a person donating one of their kidneys whilst retaining their other kidney. Live donations have significant clinical advantages in terms of survival rates with fewer complications and rejections.3 One of the most serious ethical considerations is the issue of non maleficence where it is the duty of the clinician to do no harm. Are doctors contradicting this central tenet of medical ethics by removing organs from a healthy donor?
Source of organs The three main sources of organs are animals, cadavers and live humans. Research into animal organs as a source for transplantation (xenotransplantation) is subject to many ethical and practical questions. The issues to consider with xenotransplantation (such as pig heart valves), include conflict with religious beliefs, immune rejection and the possible risk of diseases (e.g. porcine endogenous retrovirus) crossing the species barrier and infecting humans. Research into this remains inconclusive, however the possibility of disease transmission cannot be underestimated as patients undergoing organ transplantation are susceptible to infectious diseases due to the use of immunosuppressive drugs. Other issues to consider include respecting the animal’s rights and whether we are violating natural law by placing non-human organs inside patients. A significant problem when instigating discussions about xenotransplantation is the initial shock that it can elicit.
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With live donations also comes a more sinister problem, how do we ensure the donor is making a voluntary decision and is not being coerced? Financial coercion is already a problem in many third world countries where organs are sold to wealthy individuals. Transplantation tourism is now a considerable problem with patients travelling from industrialised countries to third world countries in order to purchase organs. The Human Organ Transplants Act 1989 was introduced in the UK to prevent organ trafficking. The act states organs cannot be exchanged for payment and donations must be voluntary, it also recommends psychological counselling for both parties. Organ allocation is important as we have a limited number of organs, so we must decide which patient receives an organ and which patient does not. Once organs are obtained, they must be allocated amongst the hundreds of potential recipients. Current UK practice takes into account the urgency, length of time waiting and the quality of the match in terms of size and tissue matching.
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REVIEW This will also vary dependant on the organ type being transplanted. There are many principles used in organ distribution - Dosseter et al4 classifies these into eight main principles: The urgency principle - this is often used in life threatening situations, priority is given to patients with the greatest need, for example those at immediate risk of death are given the highest priority. The urgency principle has been criticised as it can overwhelm rational thinking in situations that are emotionally charged. The urgency principle selects patients that are at immediate risk of death. This can then lead to the allocation of organs to patients who might not utilise the organs to their full capacity. Therefore, an organ that may have kept a chronic patient alive for 5 years is instead allocated to a patient in acute distress but even with the organ can only expect to survive 5 months. How do we establish which patient can most benefit from or utilise an organ? There are many factors that influence how well a patient utilises an organ. Perhaps the most important factor is graft success. According to Guttman et al,5 patients in critical care often have lower rates of graft success, thus not utilising the organs full potential. The urgency principle has been criticized for lacking fairness; patients with chronic diseases may be on a waiting list for several years, whilst another patient with acute injuries may receive an organ immediately because of their life-threatening situation. An apparent lack of fairness could have an adverse effect on public perception as equal treatment of patients is seen as one of the most important factors in organ transplantation and its management. The utility principle - also known as the medical efficacy principle is based around optimising the health outcome of the patient. It uses physical factors such as the patients age, HLA matching and type of illness to allocate organs. These factors are associated with the health outcome, for example a close HLA match between patient and donor means there is less chance of organ rejection. The lottery principle - this system is based on random selection and disregards clinical information. According to Dossetor, patients would accept this principle whereas clinicians would not as it ignores their professional expertise. Irrespective of how much we debate and discuss organ allocation there will always be a sense of unfairness. However, with the lottery principle all patients have an equal chance of selection. The lottery principle has potential uses in situations where fair judgement cannot be reached. The queuing principle - perhaps the simplest principle, it is based on allocating organs based upon time spent on the waiting list for an organ. In its purest form clinical factors are ignored, and the organ is offered to the patient who has spent the most time on the list. Clinicians and patients have been known to take advantage of this system by applying to multiple transplant schemes, so it is important to integrate different waiting lists and prevent patients from applying to multiple lists. The queuing principle can be viewed as the fairest and least discriminative, however it also has several limitations such as its inflexibility: the queuing principle does not make considerations for patients in medical emergencies that require immediate organ transplants. The financial principle - is based on market forces of supply and demand of organs. Here affluent patients have an advantage and
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are able to gain priority, an occurrence especially prevalent in the developing world. The ability to pay is seen all over the world, even in developed countries such as the UK where transplant programmes are government run. Here the ethical implications are clear: ideally, organ transplantation should be fair and accessible to any patient, if money is involved the process might be subject to abuse. Again we have to balance this against an individual’s autonomy. Today’s society places great emphasis on the rights of individuals to choose what happens to their own bodies. Following this line of thought, it can be conceivable for an individual to sell one of their own organs, not only would this respect the individual’s autonomy but it might also increase the number of donor organs available. Whatever one thinks of the financial principle, the selling and buying of organs is a fact and one that will likely be around for as long as organs are a rare commodity. The social worth principle - Rescher6 identified this controversial method of allocation, which takes into consideration a patient’s social worth. This is measured by various factors including the patient’s social situation, their previous usefulness to society and their future potential. Should we favour a 25 year-old doctor who could help hundreds of patients over a 25 year-old vagrant? This type of approach is seen to be unacceptable in countries where the organ transplant programme is publicly funded, however it has been utilised most notably in Seattle where the programme was introduced in the 1960s with the initial development of dialysis treatment. Selection criteria were developed due to the high expense and limited availability of treatment, they included questions such as value to community and number of dependants. How do we define social worth? Who has the right to decide what is socially worthy? The societal approach can be seen to reduce an individual to a socioeconomic entity, in turn leading to discrimination against patients that are from lower socioeconomic groups. The needs of the programme policy - this is an offshoot of the utility principle (the medical efficacy principal), where decisions are based on clinically relevant information such as HLA matching and disease prognosis. However, the main difference between the utility programme and the needs of the programme policy is the clinician’s primary concern. Clinicians using the needs of the programme policy are seen to secure the future of the programme, sometimes at the detriment of patient health. Financial security is achieved through continued success of operations so the clinicians select patients that are at low risk using the utility principle criteria. Macroallocative public policy - this is the nation-wide approach to health care used by the government to dictate health care policies. Factors are usually non-clinical, the most important usually being monetary and availability of organs, these are factors not sensitive to individual needs. The eight principles mentioned all have their advantages and disadvantages, so which principles should we use to allocate organs? Perhaps a points system might be the solution, where we integrate the different principles and develop a universal answer to the dilemma. One such points system exists in kidney transplantations called the European transplant algorithm. Here clinicians use a number of algorithms to assign points to patients and eventually allocate organs, each algorithm takes a different aspect of organ allocation into consideration for example HLA
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REVIEW Conclusion matching and age. The points a patient accumulates from different algorithms are combined to give each patient an overall score, which determines where on the waiting list a patient is placed. Another advantage of using a points system is that we can now undertake objective research into how we allocate organs and we can compare allocation systems on a nation-wide or global basis.
To use only one ethical approach for organ allocation leads to a perception of unfairness. How we define patients suitable for organ allocation should take into account the medical, social and emotional viewpoint, thus perhaps using an algorithm to integrate the aforementioned ethical ideas would be the optimum way of doing this.
The introduction of an algorithm system in the USA illustrated the biased allocation that was prevalent under the old system. Research demonstrated a bias of kidney transplants in the USA towards men over women, the young over the elderly and white patients over black patients.7 The main advantage of using a points system is the transparency of the process. Removing the ambiguity around the issue makes the process more systematic and less subject to bias. By using such systems, we can develop centralised policies that are open to inspection. We also alter the patient-doctor relationship by removing individual clinicians from the allocation process. As physicians are no longer expected to allocate organs to individuals, this should improve the patient-doctor relationship leaving clinicians to fulfil their role as impartial advocates for all their patients.
References
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1.
2. 3. 4. 5. 6. 7.
Organ Donation Facts [information sheet online] NHS online 25/11/2007 [25/03/2008]. Available from http://www.nhsdirect. nhs.uk/articles/article.aspx?articleId=562&sectionId=34 Namihira, E. Shinto concept concerning the dead human body. Transplantation proceedings. 1990; 22(3): 940-1. Nicholson, M. Kidney transplantation from asystolic donors. British Journal of Hospital Medicine. 1996; 55(1/2): 51-56. Dossetor, J. Ethics issues in organ allocation. Transplant Proc. 1968; 20:1053-1058. Guttman, T and Land, W. The ethics of organ allocation: The state of debate. Transplantation Reviews. 1997. 11, 197-207. Rescher, N. The Allocation of Exotic Medical Lifesaving Therapy. Ethics 1969; 173, 178-79. Veatch, R. Transplantation ethics. 2002; Georgetown University Press; 118-137.
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PERSPECTIVE
Promoting IVF: The (un)hidden effects of playing God Chantal Bohren Year 4 Medicine, St. George’s University of London m0401801@sgul.ac.uk doi:10.4201.lsjm/hle.004
For the full article and references see thelsjm.co.uk.
Introduction On the 25th of July 1978 the first baby conceived in vitro was born.1 The world’s press went into overdrive in a race to break the news. The hyperbolic headlines screaming “BABY of the century” and “Test Tube Baby”2,3 announced the birth of Louise Brown. The Time magazine sensationally described the palpable expectation of the newborn as “the most awaited birth in perhaps 2000 years”.2 The scientific breakthrough in reproductive biology of human species by means of in vitro fertilisation (IVF) was heralded by some commentators as a miracle of modern medicine. However, few advances in medicine sparked off such far-reaching controversy, as the intervention in the act of procreation. With repercussions on ethical, moral and social aspects of human life, creation of life outside the womb could be interpreted as usurpation of God’s powers. Was the interference into God’s domain the opening of the Pandora’s Box? This article will first provide the contextual background of this issue. Subsequently, economic, political and religious aspects as key drivers affecting public and private sector policies, as well as societies’ views and attitudes, will be explored. Though the issues will be considered in the aforementioned order, the problems, concerns and questions surrounding this subject are tightly interlinked. Screening IVF With an estimated 4% – 14% of all couples in the reproductive age being affected by infertility,4 it is not surprising that reproductive medicine has mushroomed over the past few decades. Since the birth of Louise Brown, approximately 3.5 million newborns were delivered as the result of eggs and sperms being introduced to each other in a Petri dish.5 In the UK, around 35,000 women had IVF treatment in 2006, resulting in more than 10,000 live births.6 The average success rate varied significantly across age groups, ranging from 31% for women under 35 to 4% for women above 44 years of age.6 More than one fifth of all treatment cycles resulted in multiple births.6
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IVF treatments are still tremendously expensive. According to the latest figures by the Human Fertilisation and Embryology Authority (HFEA), the cost for undergoing the therapy in the UK ranges between £4000 and £8000.6 The NICE1 guidelines affords each couple a maximum entitlement of three state funded IVF cycles;7 a vast majority of care trusts pay only for one.5 As a result, in 2005, two thirds of the provided treatment cycles were paid for privately.5 Compared to most Western European countries, the current funding scheme in the UK is more taxing on patients.5 In contrast, the most extensive state subsidies for IVF are provided in Israel. In fact, irrespective of marital status and sexual orientation, Israeli women can repeat the treatment cycles “as many times as needed” until two children have been born.8,9 To pay or not to pay? If governments were to ask a Homo economicus whether statesubsidised IVF was a viable business proposition, the answer would most probably be in the affirmative. In fact, the body of research concurs that if a long term perspective is taken into account, it is profitable for governments to fund IVF treatments.10,11,12,13 However, IVF services are available to less than a quarter of all the 191 member states of the World Health Organisation (WHO).14 Strikingly, even in industrialised nations of the West, utilisation of IVF is far below the optimal level.4 The key reason for the lack of governments’ funding is the elevated costs associated with the IVF therapy.3, 4,15,16,17 As a result, in most countries patients have to pay part or all of the treatments cost out of their own pockets, reinforcing the notion that only affluent people can purchase superior products and services. The current predominantly selffunded system discriminates against people who cannot afford the treatment. Some observers suggested that inadequately funded procreation programmes effectively result in a form of financial eugenics.18 In fact, researchers discovered that people benefiting from IVF treatments primarily share a few key attributes, namely race, age, education and financial status.4,15 Consequently, the ethical concern is that IVF treatment, or access to it, does not benefit people in society equally.
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PERSPECTIVE With IVF’s unsatisfactory permeation in society, the elicited question is whether there are more cost effective birth increasing measures at governments’ disposal? According to the finding of a comparative study benchmarking IVF against the provision (or increase) of child benefits, funding test-tube babies is more cost effective.19 In the current climate where most western countries are faced with sub-replacement fertility rates, economic rationale would strongly suggest an increase in state subsidies for IVF treatments.19
IVF and the NHS – a brief introduction.
Myopic regulation? In liberal societies the reproductive realm has historically been a private affair. However, by opening a new frontier through IVF, one more bastion has fallen under governments’ remit. Given the many nations’ different stance to ethical questions on reproduction and health care services, it is understandable that legislation introduced across these countries are conflicting and competing.20,21 For instance, egg donations are treated very differently in different countries. Whereas Germany and Switzerland prohibit such procedures, the US allows them.21 In the UK eggs can only be donated, but not sold.20 A further example is the provision of infertility treatments in most Western European countries, whereby only heterosexual couples and pre-menopausal women are allowed receive such treatments.
• 28% for women under 35 years of age, • 24% for women between 35-37 years of age, • 18% for women between 38-39 years of age, and • 11% for women between 40-42 years of age.
By and large, as a result of legal restrictions and prohibitions applied in certain countries, people with purchasing powers fulfill their desires in jurisdictions that allow the purchase of the required services and products.21 Some observers have described this international market phenomena as reproductive tourism.4,20,21 The ethical merit embodied by such a commercial system is questionable, as the cost of international exchange is also carried by societies which are opposed to assisted reproductive procedures.22 Therefore, the question of whether the result of a self-regulated marketplace is more advantageous might be raised? The key benefit of such an arrangement is the inherent flexibility in responding to emerging technological advances without the need to issue new legislation whenever new procedures become available.21 However, relying on the invisible hand of free markets to take the decisions, might potentially open the doors for abuse. It is not hard to imagine that exuberant demands of parents coupled with the inquisitive nature of scientists would establish, or fast-track, the concept of “Designer babies” with boundless procedural permutations. Corroborating this reflection is the recent announcement by a fertility clinic in the renowned liberal state of California. The US clinic revealed that it extended the array of reproductive options, offering prospective parents the choice of traits like eye and hair colour for their future offspring.23 Potentially, the ethical middle ground between the consequences of an inconsistent prohibitive market and the vagaries resulting from a free market might be a regulated market.20,22 At a macro level, international laws restricting the ethically most severe occurrences of commercialism would need to be passed.20 At a national level, guidance could be provided by an independent organisation. Following the HFEA’s well devised structure and function, the organisation would license fertility clinics, monitor and approve procedures for assisted reproduction, enforce a Code of Practice, inform the general public and monitor research initiatives.22
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IVF (In-Vitro Fertilisation) is a method for assisted conception where an egg is fertilised with sperm outside the body. The most notable variable that affects the success of IVF is age: younger women tend to have healthier eggs. Because of this women over the age of 45 are not recommended for IVF as the success rates are too low and conception using older eggs is more likely to result in chromosomal abnormalities, birth defects and miscarriage. The NHS1 quotes the success rates as follows:
The NICE2 guidelines state that 3 cycles of IVF treatment is offered if: ∑ the woman is between 23 and 39 at the time of treatment AND ∑ one or both of the couple have been diagnosed with a fertility problem OR ∑ there has been at least 3 years of infertility. There are many risks associated with the treatment including multiple births and ectopic pregnancies. For more information on this please use the websites from which the above information was obtained. These are: 1. 2. 3.
NHS choices website. Accessed 19th April 2009. http://www. nhs.uk/Conditions/IVF/Pages/Introduction.aspx NICE guidelines. Accessed 19th April 2009. http://www.nice. org.uk/guidance/CG11/publicinfo/pdf/English HFEA website. Accessed 19th April 2009. http://www.hfea.gov.uk/index.html
Against God? And God blessed them, saying, Be fruitful and multiply, and fill the waters in the seas, and let fowl multiply on the earth.24 - Holy Bible: Genesis 1:28 Adhering to the divine instruction, initially given by God to Adam and Eve, has historically been easy and enjoyable for the human species. However, the process of generating new life in the natural way eluded a minority but increasing part of the population. The availability of new technologies has imposed on various religious leaders the challenge of providing guidance to their devout followers. The Roman Catholic branch of Christianity opposes IVF because it separates the procreative purpose of the marriage from its unitive purpose.25 “Playing God” by means of assisted reproductive technologies is considered improper human arrogation of the divine power. In Italy and many Latin American countries, the Roman Catholic Church applied pressure on legislators to restrict or prevent access to IVF treatments.4,26 In contrast, imitating God by acting in ways of “beneficence, mercy and compassion” is encouraged in Judaism.22 Henceforth, the IVF policy in Israel is very liberal and strongly supports pronatalism.8,9 Similarly, Islamic faiths support and welcome assisted reproduction,22 though only insofar as the family’s genetic lineage is retained.4,27
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PERSPECTIVE References The analysis of ethical questions surrounding IVF is subjected to varying principles, values and priorities embodied by religious communities. Therefore, it is comprehensible that different conclusions can be drawn, each with its content-specific ethical merits. However, arguing what is best for a liberal society, based on ethical instructions derived from religious prescriptions is a rather daunting and dubious task to fulfill.28
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Conclusion Understanding all the implications of promoting IVF is extremely difficult, and is most likely impossible. The availability and accessibility of IVF treatments is the intricate product of economic, political and social forces, manifesting themselves in public and private sector policies, as well as religious and cultural principles and instructions. Ethical reflections and public debate about how IVF is changing Life in its broadest sense are paramount. At a personal level, the stories painted by the world of assisted reproduction, with IVF as the magic token, are touching and often tragic. However, stretching societal principles and values to accommodate the desires of individual parents and inquisitive scientists is an uncharted and critical path to walk. In some interpretations of the Pandora’s Box, the opening of the jar did not release evils, ills and plagues, but rather the golden light of Creation. In the case of IVF, the opened jar released the miracle of new Life though it raises many ethical questions.
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9.
10.
TIME. Test-Tube Baby: It’s a Girl. TIME. [Online] August 7 1978. Available from: http://www.time.com/time/magazine/ article/0,9171,948239,00.html [Accessed 5th March 2009]. TIME. The First Test Tube Baby. TIME. [Online] July 31 1978. Available from: http://www.time.com/time/magazine/ article/0,9171,946934,00.html [Accessed 5th March 2009]. TIME. Frenzy in the British Press. TIME. [Online] July 31 1978. Available from: http://www.time.com/time/magazine/ article/0,9171,946938,00.html [Accessed 5th March 2009]. Nachtigall, R. International disparities in access to infertility services. Fertility and Sterility 2006; 85: pp. 871–875. The Economist. No IVF please, we’are British. The Economist. [Online] July 17 2008. Available from: http:// www.economist.com/world/britain/displaystory. cfm?story_id=11750879 [Accessed 5th March 2009]. Human Fertilisation and Embryology Authority (ed.). The HFEA Guide to Infertility. London: HFEA; 2007. National Collaborating Centre for Wonem’s and Children’s Helath. Fertility: assessment and treatment for people with fertility problems. Clinical Guideline. London: Royal College of Obstetricians and Gynaecologists; 2004. Birenbaum-Cermeli, D. and Dirnfel, M. In Vitro Fertilisation Policy in Israel and Women’s Perspectives: The More the Better?. Reproductive Health Matters 2008; 16(31): pp. 182–191. Birenbaum-Cermeli, D. “Cheaper than a newcomer”: on the social production of IVF policy in Israel. Sociology of Health & Illness 2004; 26(7): pp. 897-924. Svensson, A., Connolly, M., Gallo, F. and Hägglund, L. Longterm fiscal implications of subsidizing in-vitro fertilization in Sweden: A lifetime tax perspective. Scandinavian Journal of Public Health 2008; 36: pp. 841–849.
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lsjm 15 june 2009 volume 01
ARTICLE
The dangers of multiple births: the Octuplets’ story Jessica Whitehead
Year 3 Medicine (GEP), St. George’s University of London m0600174@sgul.ac.uk doi:10.4201.lsjm/hle.002
Introduction The birth, in California, of the world’s second set of live-born octuplets on 26 January 2009 (and the only set to all have survived for more than a week), has caused a great deal of controversy in the media.1 The case has also raised many questions about the motives of the doctors involved, as well as the ability of the mother to care for her children. The six boys and two girls were born at 30 weeks’ gestation, to 29 year-old Nadia Suleman, who already has six children through In Vitro Fertilisation (IVF). In this pregnancy, it appears that she had six embryos transferred, two of which later split into two pairs of identical twins. At the time of writing, all of the babies are stable, with very few requiring oxygen, and there do not seem to be many health concerns.2 Multiple births are a common outcome of Assisted Reproduction Technologies (ART), of which IVF is probably the best known. However, this is an extremely unusual outcome. Many pregnancies of quadruplets, triplets or even twins result in long-term problems for the babies themselves and their families and therefore use a lot of resources.3 Because of the real dangers to mother and babies from a multiple pregnancy, several methods are used to try to ensure that only a singleton, or, at worst, a twin pregnancy results. These include limiting the number of embryos transferred, or
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reducing a multiple pregnancy to one or two foetuses. This article will discuss the problems of multiple pregnancies, as well as embryo transfer and some of the ethical issues relating to pregnancy reduction.
For the full article and references see thelsjm.co.uk.
Some dangers of multiple pregnancies Despite the fact that 66% of couples undergoing IVF who were surveyed by the British Fertility Society and “Child” (a UK infertility self-help organization) felt that having twins would be an ideal outcome,4 there are many reasons why multiple pregnancies are not encouraged. Prematurity is one of the greatest dangers facing multiples, with twins on average being born at 37 weeks, triplets at 33.5 and quadruplets at 31.5.5 Infant mortality increases as prematurity increases, as shown in a report of preterm birth and mortality rates produced by the Office of National Statistics.6 In 2005, figures for England and Wales showed a 85% mortality in the 283 infants born at 23 weeks. At 26 weeks the percentage of deaths was lower; 24% of 704 live births. And by 31 weeks the infant mortality rate was 3% of 1935 live births. However, this is still 15 times higher than the 0.2% mortality rate for infants born between 38 and 40 weeks.
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ARTICLE Premature infants who survive are at increased risk of many longerterm complications, compared to term infants. For example, retinopathy of prematurity was found in 66 % of infants born weighing less than 1.25 kg. 7 In addition, the EPIPAGE study found that half of babies born between 24 and 28 weeks had a cognitive or motor impairment at 5 years, compared to a third of children born between 29 and 32 weeks.8 There are other health problems associated with being one of a set of multiples; these include twin to twin transfusion, polyhydramnios and Central Nervous System disability. The increased risk here is independent of prematurity. A common example is the three to seven-fold increase in cases of cerebral palsy amongst twins which has a background risk of 0.2% in singletons9 and a ten-fold increase among triplets.10 The immense publicity and lack of privacy which higher order multiples are subjected further adds to the stress faced by such pregnancies. The current media attention on the octuplets is likely to be long term and very intrusive. Ethical issues surrounding the care of extremely premature neonates The ethical issues in this case will now be discussed according to Beauchamp and Childress four principles.11 These are; the requirement to do good (beneficence), to not do harm (nonmaleficence), to respect autonomy and to consider the justice of different options. The potential outcomes of acting which in many infants is in the form of aggressive treatment measures often appears to be in their best interests. For a few babies, particularly ones born at the extremes of viability or who are very ill, the clinician’s view may be that such intervention will fail to save the child’s life and hence futile. Alternatively it may be that the resulting quality of the child’s life would be so poor that he or she should be allowed to die.12 In these situations to continue to treat the child aggressively might actually be doing harm. Autonomy is a difficult concept when considering very young children, as they are often unable to indicate their wishes or lack an understanding of ensuing consequences. This is perhaps even more difficult when our actions result in a child who will be developmentally disabled such that he or she will never be autonomous. The mother often represents the infant’s interests in these cases. The issue of justice is particularly relevant when discussing resource allocation, as it involves considering the impact of any decision on other patients, the community and the population as a whole. Premature babies may sometimes require long in-patient stay conjuring the image of “bed blockers”. 13 The health service unfortunately has limited resources and this raises questions whether heroic interventions such as the resuscitation of extremely premature neonates is appropriate when these babies are likely to suffer significant disability, and therefore increase demand for already limited. In 2006, the United States health service spent $26 billion on the care of infants born preterm.15 The issues discussed often become abstract when faced with actual families and the clinician’s concern will usually be for the individual neonate condition and prognosis.
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Methods used to avoid high-order multiple births For the reasons already discussed, it seems desirable to try to reduce the number of multiple births without affecting the number of IVF successes. Reduced number of embryos transferred Medically, the best outcome from IVF treatment would be one baby resulting from the transfer of one embryo. Although a small chance of this embryo splitting into twins exists, the likelihood of higher order multiple births would be negligible.16 Elective single embryo transfer has been suggested.17 To increase the chances of successful implantation two or more embryos are usually transferred. In the UK, the Human Fertility and Embryology Act Code of Practice 2007 governs the number of embryos per cycle.18 The HFEA permits women under 40 using their own eggs, and all women using donor eggs, the transfer of two embryos per cycle. For women over 40 using their own eggs, three embryos can be transferred. Failure to comply with this Code can lead to the institution losing its license and the individual doctor being disciplined. The Code also states that if any woman who fits the criteria for single embryo transfer has more than one embryo transferred, the reason should be documented. In the United States there are no legal restrictions on the number of embryos which can be transferred. However, guidelines published by the American Society for Reproductive Medicine (ASRM) give a list of situations where the prognosis is favourable (for example, in the first cycle of IVF or if there are good quality embryos). 19 In these situations, one cleavage stage (three-day old) embryo could be transferred in a woman under 35, two in a woman aged 35-37. These recommendations provide guidance only and there is no legal requirement to follow them. The only repercussions may be expulsion from professional organizations and the inability to obtain insurance.20 Although audits by the ASRM and the Centre for Disease Control (CDC) encourage clinicians to comply, many may feel that these guidelines take clinical autonomy away from them. In an article by the Associated Press, it was noted that reports filed by clinics with the CDC showed that less than 20% of clinics were following these guidelines. 21 Despite this, it seems that it is very unusual to need to transfer six embryos in a single cycle, especially as, in the case of Nadia Suleman, she had already been successful several times. Her doctor may be investigated for this by the ASRM.22 Selective reduction of fetuses This is an option offered to a woman who is pregnant with two or more foetuses. The decision is normally made relatively arbitrarily about which foetus(es) to destroy, and the procedure is then performed, usually by the injection of potassium chloride into one or more of the foetus(es). The risk of premature birth and other complications in the surviving foetus(es) can be reduced by selective reduction, For example, reduction from a triplet to a twin pregnancy reduces the risks of birth before 28 weeks from 8.5% to 3%, and increases the percentage of babies born and taken home from 79% to 93%.23
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ARTICLE However, selective reduction carries its own risk of miscarrying all of the foetuses, with a loss rate of 4.5% for triplets, 8% for quadruplets and 11.5% for quintuplets.24 The ethics surrounding foetal reduction are interesting particularly because there are two patients (or in the case of a multiple pregnancy, three or more). When considering beneficence, one has to look at the best interests of the mother and all of the foetuses. The mother’s best interests may be in remaining healthy and therefore selective reduction. This is because selective reduction lowers the obstetric risks to the mother posed by higher order multiple pregnancies. However the psychological impact of destroying one or more of much-wanted babies must not be underestimated. The parents and surviving siblings may feel lasting guilt, although research has shown that most couples felt that selective reduction had been the right choice for them. This suggests that the parents tend to value the autonomy they are given by making the decision for themselves. 25,26 In opposition to the best interests of the mother and surviving infants however, are the interests of the foetus(es) which are selected for destruction. This raises all of the issues surrounding termination of pregnancy, including the rights of the mother compared to the rights of the foetus. Currently only the mother has any legal rights before the delivery of the baby.27 Reports suggest that Nadia Suleman refused selective reduction.29 This is not an unusual reaction, and is a decision supported by many pro-life groups arguing that every foetus has an equal and intrinsic right to life from the moment of conception.30 Failing to reduce the number of foetuses can result in a worse outcome than with the Suleman babies. Mandy Allwood, in 1996 decided to continue with her octuplet pregnancy sadly all the babies were born too prematurely to survive.31 Conclusion Current reports suggest that Nadia Suleman’s octuplets are clinically stable with no medical problems at present. However, the long-term sequelae of prematurity may take years to become apparent. They are also likely to face the challenges experienced by multiples, such as lack of individuality and increased demands for parental attention.
Referance 1. Tedmanson S. Woman gives birth to Octuplets in California. The Times Jan 27 2009 Available from: http://women. timesonline.co.uk/tol/life_and_style/women/families/ article5596036.ece [Accessed 8th April 2009] 2. Tedmanson S. Woman gives birth to Octuplets in California. The Times Jan 27 2009 Available from: http://women. timesonline.co.uk/tol/life_and_style/women/families/ article5596036.ece [Accessed 8th April 2009] 3. Mistry H, Dowie R, Young TA, Gardiner HM; TelePaed Project Team. Costs of NHS maternity care for women with multiple pregnancy compared with high-risk and low-risk singleton pregnancy. BJOG. 2008 Feb;115(3): p 416. 4. Murdoch AP. How many embryos should be transferred? Human Reproduction, 1998, 13: pp 2666–2669. 5. Macfarlane AJ. Early days. In: Botting BJ, Macfarlane AJ, Price FV, (eds). Three, four and more; a national survey of triplet and higher order births. London, HMSO, 1990: pp 80–98 6. Moser K, Macfarlane A, Chow YH, Hilder L, Dattani N. Introducing new data on gestation-specific infant mortality among babies born in 2005 in England and Wales Health Statistics Quarterly Autumn 2007, Office of National Statistics, London 7. Allin M, Rooney M, Cuddy M, et al; Personality in young adults who are born preterm. Pediatrics. 2006 Feb;117(2):pp 309-16. 8. Larroque B, Ancel PY, Marret S, et al; Neurodevelopmental disabilities and special care of 5-year-old children born before 33 weeks of gestation (the EPIPAGE study): a longitudinal cohort study. Lancet. 2008 Mar 8;371(9615):pp 813-20. 9. Stanley FJ, Blair E, Alberman E. Cerebral palsies: epidemiology and causal pathways. London: Mac Keith, 2000. 10. Petterson B, Stanley F, Henderson D. Cerebral palsy in multiple births in Western Australia. American Journal of Medical Genetics, 1990, 37: pp 346–351.
Despite the media circus, however, it is vital to remember that these are eight new individuals, and whatever actions the adults in their lives have taken, they have the same right to individuality, happiness and privacy as any other children.
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PERSPECTIVE
Baby shambles? Katie Honney BSc (Hons) Year 4 Medicine, University College London k.honney@ucl.ac.uk doi:10.4201.lsjm/hle.001
For the full article and references see thelsjm.co.uk.
Adolescent pregnancy has long been a contentious topic, but in the past decade, this issue has become one of the most frequently cited examples of the perceived societal decay in the United Kingdom. In 2007, 40,298 adolescents under the age of 18 became pregnant.1 Analysis of these statistics and trends indicate that teenage pregnancy is not an exponentially growing phenomenon in Britain. Nonetheless, the number of births to teenagers is considered unacceptable. The complexities surrounding the issue of teenage pregnancy are widespread, some of which extend beyond the scope of this article. Rather, the concept of parenthood, the implications for both young parents and their children and the subsequent impact upon primary care and society have provided the focus for this discourse. In addition, whilst most studies found in the literature focus on the antecedents and consequences of teenage pregnancy in relation to young women, research that directly examines the contributions of the men involved is scant. Thus it is also important to explore the role of the adolescent father and broaden the discussion of these significant issues. Parenthood The quality of parenting is a crucial factor in the healthy growth and development of a child. Parenting involves both the care and affection of the child, and the natural desire to raise them in a way that facilitates them to succeed in life.2 The transition to parenthood can be a stressful time for many, regardless of age or background. For teenage parents, such stresses are likely to be compounded by their typically underprivileged backgrounds as well as the addition of the normative changes throughout adolescence, such as identity and relationship formation. Whilst adolescent parents may well have desirable intentions for their children, several research studies report that the majority of teenage pregnancies are unplanned, and the outcomes for the parents and their child in terms of life chances are negative.3 Implications for young parents Teenagers who give birth during their adolescent years tend to function less effectively in numerous areas than their peers who delay childbearing4. This recent research has indicated that many of the negative outcomes of adolescent parenthood, such as low educational achievement and poverty, precede rather than stem from
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early parenthood. Nevertheless, it states that teenage pregnancy adds to the limited prospects of the already disadvantaged adolescent. These outcomes include poorer psychological functioning, lower rates of school completion, reduced levels of marital stability and additional non-marital births, less stable employment, higher rates of poverty, and slightly greater rates of health problems for both the mother and child as compared with peers who postpone childbearing.4 In addition, there are a number of long-term negative health outcomes for young mothers. Teenagers usually go to their doctors much later in pregnancy than older women,5 meaning they often miss out on preconception and first trimester healthcare, such as folic acid supplementation, to help prevent neural tube defects. Almost half of all teenage mothers smoke during pregnancy, with health and economic consequences for both mother and baby.6 There is some evidence of higher rates of pregnancy complications and maternal mortality for teenage mothers.6 Forty percent of teenage mothers have an episode of depression within one year of childbirth, and postnatal depression may be up to three times more common in teenage mothers than their older counterparts.6 In addition, questionnaire data from a Department of Health study highlighted that teenage mothers were significantly more likely than older mothers to: receive means-tested benefits; not have worked recently; not to have school or university qualifications and to be in social housing7. However, when adjustments were made for factors at baseline associated with teenage pregnancy such as poverty, living in social housing, lone parenthood, and leaving school before 16, the teenage mothers in the study were no more likely than the older mothers to have poor outcomes.7 This confirms the view that social exclusion may be implicated by teenage pregnancy but does not necessarily cause it. Having said this, not all teenage parents have parenting problems and it is vital that generalisations are interpreted as generalisations only. Further research will prove invaluable in exploring variations in adaptation to early parenthood. The forgotten father Reviewing the social and psychological literature of the 1970s concerning adolescent childbearing, Chilman cited the problem of
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PERSPECTIVE “insufficient attention to the attitudes and behaviours of males in respect to adolescent parenthood” as one of the major problems in the conceptualisation of teen pregnancy.8 From the information available, it is generally agreed that fathers tend to be two or three years older, on average, than teenage mothers. However, in the recently publicised case of Alfie Patten he was two years younger than girlfriend Chantelle Steadman, a fact that has caused much concern among policy makers. Like teenage mothers, male adolescents tend to be from lower socio-economic classes, are often continuing an intergenerational practice (many are from families who experienced teenage childbearing and receive welfare), and have low educational achievement.9 Having said this, research would suggest that young fathers do not fit the stereotype once applied to the “putative” father. Many desire involvement with their children: Furstenberg and Talvite found that 90% of the fathers of babies born to adolescent women remained involved with their children for at least one year after birth.8 A study executed in Rochester, New York found that 68% of teenage fathers were happy when they learned of the pregnancy, although it was unplanned in almost all cases.10 Nonetheless, the study also revealed that less than half the teenage fathers were coping well with the situation. Infact, clinical depression was common and nearly half required referral for psychotherapy.10 Most prospective fathers are under a phenomenal amount of stress, regardless of their age. Teen fathers must learn to cope with the stress and uncertainty of fatherhood alongside the already difficult events of adolescent development. During adolescence, the individual gradually moves toward emotional, social and financial independence. Teenage years are typically characterised by rebellion against adult values, narcissism and self preoccupation. Such normative adolescent changes conflict strongly with the emotional and financial responsibilities of fatherhood. Difficulty in resolving such conflict accounts for the frequency of depression in teenage fathers and indicates their need for psychological services.11 Quinlivan and Condon undertook a cross-sectional cohort study to compare levels of psychological symptomology in fathers in the setting of teenage compared to non-teenage pregnancy. The results revealed that significantly more fathers in the setting of teenage pregnancy met the criteria of having ‘Hospital Anxiety and Depression’ (measured using a sub scale that analyses anxiety and depression in hospital patients), when compared to older fathers.11 Negative reactions from parents and social exclusion among peers can deepen such depressive symptomology within young fathers and lead to subsequent long-term health implications.12 Such research highlights that teen fathers have unrecognised psychological symptomology that requires appropriate services along with teen mothers. Implications for the children of adolescent parents New research has made substantial advances into the effects of early childbearing on the functioning and well-being of young parents. However, the same level of attention is yet to be directed towards the study of the children of teenage parents. Having said this, a number of small-scale studies have examined the cognitive and behavioural functioning of children of adolescent mothers compared with older mothers. Few differences were found in infancy, however, in the pre-school years delays in cognitive development emerged. Pre-school children of teenage mothers also began showing behavioural problems, including higher aggression
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levels and lower impulse control, than their peers born to older mothers.9 Further discrepancy between children born to teenage mothers compared with older mothers, is evident in adolescence too. Higher rates of grade failure, delinquency, early sexual activity and pregnancy have been recorded.9 However, these studies are now considerably outdated and more recent research, since the introduction of improved support for teenage parents and their children, is required to accurately comment on such issues. Obstetric and neonatal outcomes of teenage pregnancy also have negative associations compared to those born to older mothers. In a retrospective case-control study executed over five years at a tertiary care teaching hospital, teenage pregnancy was found to be associated with higher pregnancy induced hypertension, preeclamptic toxaemia, eclampsia, premature onset of labour, fetal deaths and premature delivery. Increased neonatal morbidity and mortality were also seen in babies delivered to teenage mothers.13 Such findings introduce a complex argument based on the concept that children born to teenage mothers are at risk of significant health complications and thus begs the question as to whether there should be more of a duty to prevent such morbidity from occurring at all. Implications for primary health care Teenage pregnancy and motherhood have implications for several different aspects of primary health care. The pregnant teenager is considered a high-risk obstetric patient given the increased risk of maternal and infant mortality apparent in teen pregnancy.13 Primary Care Trusts (PCTs) will be required, on an already overstretched budget, to provide care for these higher risk patients. Finally, and perhaps even more significantly, there is the implication of care required to deal with longer-term adverse health consequences associated with teenage pregnancy. For example, primary care physicians will have a duty to recognise the increased prevalence in vulnerability of parents to clinical depression and depressive symptomology in the year after delivery.15 The provision of health education and contraceptive services is relevant to the prevention of unplanned teenage pregnancy. More needs to be done allow appropriate support both ante and post-natally to be provided for teenage parents and their children. Implications for society Teen pregnancy obviously has a major impact on the lives of the people directly affected, yet it also has broader implications for society. With regards to the broadly publicised Alfie Patten and Chantelle Steadman case, in which a 12 year old boy and 14 year old girl conceived a child, Ed Balls, the Secretary of State for Children, Schools and Families said: “It’s not right – it looks so terrible. It has got to be sorted out. I want us to do everything we can as a society to make sure we keep teenage pregnancies down.”16 The case reignited concerns about the rate of teenage pregnancies and the sexualisation of children at increasingly early ages and condemnation resonated across the political spectrum. Although there are several health risks and biological problems related to teenage pregnancy, some of the strongest concerns for policy makers are the social and economic consequences that result from young parenthood. The high costs that come with having a new baby combined with a lack of income and support
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PERSPECTIVE for adolescent mothers can have very disparaging effects on the socio-economic status of teenage-headed families. Experts do not agree over what should be done about teenage pregnancy. Many of its problems are due to how it is regarded by society. Social disapproval may mean that young women avoid health care and may not complete their education while pregnant or return to education after the birth of their child. In recent decades, in Britain at least, teenage pregnancy has become labeled alongside cardiovascular disease, cancer and mental health as a major public health problem.17 However, arguments do exist that propose teenage pregnancy should not be conceptualized as a public health problem but rather a reflection of what is considered to be—in this time and place—socially, culturally and economically acceptable.18 Nonetheless, there are profound socioeconomic consequences of teen pregnancy which must receive timely intervention so as to avoid setting a social precedence. Teenage pregnancy is a significant global challenge and the health, social and economic issues that it raises are of deep concern to all those people involved in the care of young people. It is important to establish the issues and implications of teenage pregnancy for all parties involved. In so doing poverty, deprivation, poor educational achievement and low expectations have all been identified as key factors ontributing to the high rates of teenage pregnancy.1 It is widely recognised that teenage pregnancy and early parenthood are, in certain circumstances, associated with a number of negative consequences, including poor educational achievement, poor physical and mental health, poor employment prospects, and poor housing. In turn, these factors are inherited by the children of teenage parents, predisposing them to the same risk factors and outcomes. It is clear that reducing the rate of teenage conceptions and improving outcomes for teenage parents, could make a significant contribution to the overall reduction of social and health inequalities in the UK.19
Consent is at the heart of medical practice, obtain it and treat patients, flunk it and face the consequences, says MPS writer Sara Williams
References
This does not mean that you have to repeatedly ask for patients’ explicit consent for every minimally intrusive activity. If a patient complies with a request – “Would you hold out your arm please so I can bandage it?” – you can assume that you have their consent by implication.
1.
2. 3.
4. 5.
6.
7.
8. 9. 10.
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Department of Health. Office for National Statistics and Teenage Pregnancy Unit Teenage Conception Statistics 1998-2007. London: 2009 McWhinney I. A Textbook of Family Medicine. 2nd Ed. New York: Oxford: Oxford University Press Inc; 1989 Department of Health.Teenage Pregnancy Research Programme – briefing: Long term consequences of teenage births for parents and their children London: March 2004 Coley RL and Chase-Lansdale PL. Adolescent Pregnancy and Parenthood. American Psychologist 1998;53(2): 152-66 Simms M. and Smith C. Teenage mothers: late attenders at medical and antenatal care. Midwife, Health Visitor and Community Nurse 1984;20:192-200 Botting, B., Rosato, M. and Wood, R. Teenage mothers and the health of their children. Population Trends – Office for National Statistics 1998;93: 19-28 Department of Health (2007). Teenage Pregnancy Research Programme: Teenage Parenthood and Social Exclusion A multi-method study. London; 2007 Tuttle J. Adolescent Pregnancy: Factoring in the father of the baby. Journal of Paediatric Health Care 1988;2:240-244 Coley RL and Chase-Lansdale PL. Adolescent Pregnancy and Parenthood. American Psychologist 1998;53(2): 152-66 Elster AB, Panzarine S. Unwed teenage fathers: Emotional and health educational needs. Journal of Adolescent Healthcare 1980:1;116-120
A 22-year-old mother died recently after giving birth to twins. A Jehovah’s Witness she was reported to have refused a vital blood transfusion.1 Doctors can be confronted by these cases at any time and it’s important to remember the powers of a doctor are conferred by those they treat, so if the patient is a competent adult, where there’s no consent there can be no treatment. In the same vein, care can only be given if the person consents to it. Any procedure from the simplest taking of blood pressure, to the more complicated repairing of an aortic aneurysm requires consent.
Is written the same as verbal consent? Verbal consent is just as valid as written consent, except in circumstances where the law requires written consent, such as some forms of fertility treatment. So view consent as a process rather than a signature on a form; it results from open dialogue between you and your patient, so the sooner you get into this habit the better. Where there are disputes over whether valid consent was given, the key is not whether a patient signed a form, but whether they were given all the information they needed to make an informed decision. This should be documented in the medical record alongside evidence of the procedural risks and warnings discussed as well as any fears expressed by the patient.
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SHORT CASE
No consent, no defence
Consent is at the heart of medical practice, obtain it and treat patients, flunk it and face the consequences, says MPS writer Sara Williams
Competence New rules have recently come into force in England and Wales under the Mental Capacity Act 2005, which clarifies the assessment of a patient’s capacity and treatment of patients who lack capacity. An assessment of a patient’s capacity should be based on their ability to make a particular decision. Assume that they have the capacity unless it is demonstrated that they have not. Some patients, for example, need help to communicate a decision, but this does not mean that they lack capacity. There is a two-stage test to apply when deciding whether a patient has the capacity to consent to treatment: 1. Does the person have an impairment or a disturbance in the functioning of his/her brain or mind? 2. If so, does it mean that the person is unable to make a specific decision when they need to?2 What if consent is not taken? Many MPS clinical-negligence claims are settled because valid consent was not obtained, or the evidence for it was missing from the notes. In theory, where harm has befallen the patient and valid consent was not obtained, the doors are open for allegations of professional misconduct and even criminal charges of assault or battery, although these are extremely rare. You need to be familiar with GMC guidance and follow it. Otherwise if there is a complaint your professional conduct could be called into question. So communicate effectively with your patients from the outset and protect yourself and your practice. Case study While working in A&E, Foundation Year 1 Dr Y saw an elderly patient who was experiencing nausea and vomiting. She took appropriate steps to start treatment including the insertion of a Venflon in the patient’s arm.
A couple of hours later, the patient’s family arrived and became alarmed about the extensive bruising around the Venflon which had been used. The patient alleged that Dr Y had inserted the IV cannula incompetently and without her consent. The patient’s family complained to the hospital and to the GMC. Dr Y rang MPS and was immediately put in contact with a medico legal adviser who gave her advice and support throughout the subsequent investigations. She was able to meet her adviser and eventually, after numerous exchanges of correspondence and scrutiny of the case notes, the GMC referred the matter back to the hospital. A meeting was arranged by the hospital complaints officer between Dr Y and the patient, in which Dr Y acknowledged that although she had told the patient she was inserting a Venflon, she did not warn her about the pain and bruising it might cause, and apologised. Outcome The patient accepted the apology and was assured that the doctor would always fully explain her actions in the future. The issue here was that Dr Y failed to obtain valid consent because the patient did not have all the relevant information. The GMC expects patients to be given all information material to their decision. “It is not justifiable to withhold information on the grounds that it may prove worrying or generate anxiety.”3 Useful links • General Medical Council • Department of Health guidance on consent – www.dh.goc.uk/policyandguidance • MPS guidance • MCA code of Practice 1. 2. 3.
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Mother dies after refusing blood 5 November 2007 BBC News DCA, Mental Capacity Act 2005: Code of Practice, 2007, p. 45 General Medical Council, Seeking Patient’s Consent: The Ethical Considerations, November 1998, para. 10.
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