Volume VI Issue ii

Volume VI Issue ii

Penn Bioethics Journal

THE ETHICS OF

XENOTRANSPLANTATION

Also Inside:

Interview with Amy Gutmann Chair of the Presidential Bioethics Commission

Placing the Patient at the Center of Care

Penn Bioethics Journal and Society The Penn Bioethics Journal (PBJ) is the nation’s premier peer-reviewed, undergraduate bioethics journal. Established in 2004, the Journal features and provides a venue for the contributions of undergraduates to bioethics. PBJ, embracing the interdisciplinary focus of bioethics, reviews and publishes reports of empirical research and analysis of previous work -- addressing debates in medicine, technology, philosophy, public policy, law, theology and ethics among other disciplines.

The biannual Journal additionally features news briefs and editorials reviewing current bioethical issues, as summarized by our undergraduate editorial staff. Undergraduate editors and authors have a unique opportunity to get involved with the peer-review process through the collaborative and rigorous review and preparation of PBJ. With an audience ranging from scholars in the field to a broader public seeking unbiased information, the Penn Bioethics Journal scholastically involves all undergraduates interested in the extensive field of bioethics.

Email penn.bioethics.society@gmail.com to get more information about bioethics at Penn.

www.bioethicsjournal.com www.dolphin.upenn.edu/bioethic

Archived editions of the Journal and information about the submission process can be found on our website: http://bioethicsjournal.com To receive our weekly newsletter, apply to join our editorial staff, or make any inquiries, please email penn.bioethics.society@gmail.com The editorial staff also focuses on expanding boundaries of Penn undergraduates by hosting campus-wide events through the Penn Bioethics Society. These include formal lectures, case study presentations, public debates, debriefing of current bioethical issues and student-led conversations.

The Penn Bioethics Journal is published twice a year by the University of Pennsylvania, Philadelphia, PA. All business correspondence, including subscriptions, renewals, and address changes, should be addressed to the Penn Bioethics Journal, 3401 Market Street, Suite 320, Philadelphia, PA 19104. www.bioethicsjournal.com Stock photos from istockphoto and flickr.

Manuscripts for publication should be submitted according to the submission rules on the website: www.bioethicsjournal.com/submit.html Subscription rates are by request. Permission must be requested for any kind of copying, such as copying for general distribution, advertising or promotional purposes, creating new collective works, or for resale. Requests for these permissions or further information should be addressed to bioethicsjournal@gmail.com Copyright Š 2010 Penn Bioethics Journal, Philadelphia, PA. ISSN: 2150-5462

PBJ

Pe n n B i o e t h i c s J o u r n a l EDITOR IN CHIEF Michael Weintraub PUBLISHER Vishesh Agrawal MANAGING EDITORS Daniel Albornoz Susan Anderson Genevieve Barnard Andrew Jakubowski Arthi Kumaravel Katie McCarthy

COVER DESIGN Vishesh Agrawal Lemuel Sibulo

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Letter from the Editor Michael Weintraub Bioethics in Brief The Presidential Bioethics Commission

editorials 10 A Brief History of Organ Transplantation Sterling Sims, University of Pennsylvania

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“My Brain Made Me Do It”: Can Neuroimaging Undermine the Case for Criminal Punishment?

Ilana Yurkiewicz, Yale University

articles the Patient at the Center of Care 16 Placing Mayme Marshall, University of Washington 21

The Ethics of Non-Therapeutic Neonatal Male Circumcision Christine E. Schultheiss, Temple University

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Xenotransplantation: Weighing the Risks and Benefits of a Controversial Procedure Arun Sharma, Duke University

FACULTY ADVISOR Jonathan Moreno, Ph.D.

AWARD FOR EXCELLENCE IN UNDERGRADUATE BIOETHICS For each issue PBJ gives out the Award for Excellence in Undergraduate Bioethics along with a cash prize. Nominations are given by the PBJ editorial board, and the winner is selected by an outside editorial committee from the Penn Center for Bioethics

Volume VI Issue ii

Questions or Comments?

Please direct all inquiries to the Editor in Chief at bioethicsjournal@gmail.com

Penn Bioethics Journal

ASSOCIATE EDITORS Shirley Ahn Genevieve Barnard Michael Chan Diana Chang Ken Chang Rob Fuino Matthew Gazzara Leila Glass Angela Halstead Tucker Johns Samantha Lammie Hagop Kaprielian Megan Kauffman Alina Kim Emily Knudsen-Strong Kristyn Manomivibal Eva Noble Chelsea Ott Fahim Pyarali Nayan Ramirez Sasha Riser-Kositsky Sebastian Rowland Daniel Santos Ian Slack Lee Vandivier Barbara Wei Kristine Wong

Contents

Letter from the Editor Dear PBJ Readers, I am pleased to present our eleventh issue of the Penn Bioethics Journal (PBJ). PBJ is a peer-reviewed, undergraduate bioethics journal that provides a venue for the contributions of undergraduates to the field of bioethics. Articles published in this journal relate to disciplines such as medicine, public policy, and scientific research among others. Featured in this issue are articles that discuss topics such as xenotransplantation, neuroimaging and primary care medicine.

Each year, one article is selected to receive the Award for Excellence in Undergraduate Bioethics. We congratulate Mayme Marshall from the University of Washington for her outstanding paper, “Placing the Patient at the Center of Care.”

Penn Bioethics Journal

Volume VI Issue ii

Also included in this issue is an interview with the President of the University of Pennsylvania, Amy Gutmann, on her role as the chair of the Presidential Commission for the Study of Bioethical Issues.

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We invite you to become an active participant in the rapidly growing field of bioethics. Submit an article, a commentary, or a news brief so that PBJ can continue to draw attention to the most relevant issues in bioethics.

Until then, enjoy your next bite of PBJ.

Michael Weintraub

Editor in Chief University of Pennsylvania CW’11

Michael Weintraub Editor in Chief

Bioethics in Brief End of Life Care Makes for Longer Lives In August of 2010, following the publication of a novel study in the New England Journal of Medicine, palliative care reemerged as a pressing issue in the medical field. The study explored the effects of early palliative care on patients with terminal lung cancer. Its results demonstrated that patients receiving such care lived longer than patients who did not by an average of three months. Patients in palliative care also experienced a greater quality of life over the course of the study. They were comparably happier, in less pain, and more self-sufficient; they reported fewer instances of depression and anxiety, as well.

Overall, the number of studies assessing the effects of end-of-life care is very low and, of those few studies, almost all of them deal with palliative care administered at the end stages of treatment. This recent study is unique because researchers actively sought out patients recently diagnosed with metastatic non-small-cell lung cancer. Thus, subjects received palliative care starting from the beginning of their oncology treatment onward.

Some members of the medical community were surprised by the findings of the study, whereas palliative care specialists felt that their prior-made claims were simply

confirmed. Doctors are speculating as to why such results were obtained, and no concrete reasons have been offered.

Regardless of the explanation, the study’s results have reignited an interest in the field of palliative care. As a result, with the help of generous funding from organizations like the Hearst Foundation, scientists are already designing clinical research studies for the future.

-Andrew Jakubowski, University of Pennsylvania http://www.nytimes.com/2010/08/19/health/19care.html http://www.nejm.org/doi/pdf/10.1056/NEJMoa1000678

country where there are 11 indigenous languages, chances of miscommunication are high.

The United Nations Program on AIDS (UNAIDS) notes that there are approximately 200,000 Namibians with HIV. According to AVERT, the chances of an infected pregnant mother transmitting the virus to her unborn child through breastfeeding, without any preventative drugs, is around 20 – 45%. Although sterilization is one mechanism to prevent this transmission, it has been shown that antiretroviral therapy (ARVs), which does not prevent the mother from having children, is also effective.

-Fahim Pyarali, University of Pennsylvania http://www.bbc.co.uk/news/10202429 http://www.who.int/hiv/pub/mtct/antiretroviral/en/index.html

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After being diagnosed with HIV, three women underwent a sterilization procedure, allegedly without their informed consent. The Legal Assistance Centre (LAC), the rights group that is representing them, claims that it has documentation of 15 cases similar to this one since 2008.

Several protests against forced sterilization took place this summer in response to the lawsuit.

The women claim that their rights to sexual health and reproduction were violated because of the social status associated with being HIV positive. As a result, they are demanding $130,000 in compensation from the health ministry of Namibia.

LAC member Amon Ngavetene explains that doctors sometimes advise HIV positive women to go through a sterilization operation. Mr. Ngavetene adds that women are not always aware of what the procedure involves. In a

Penn Bioethics Journal

Namibian Women Sue Government over Forced Sterilization

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Bioethics in Brief

Chief Judge Suspends Funding for Embryonic Stem Cell Research Recently, one of the most hotly debated and divisive issues in our modern society, human embryonic stem cell research, has become the subject of even more controversy.

Following the decision of U.S. District Court Chief Judge Royce Lamberth to suspend all funding from the federal government for this often scrutinized brand of scientific research, human embryonic stem cell research (hESC), has once again become a popularly contested issue. During a particular trial involving James Sherley and Theresa Deisher, a pair of adult stem cell scientists, protests have been made against the Obama administration’s decision to augment the amount of money allotted by the government to hESC on the basis that it inhibits their ability to attain funding for their own field. Consequently, the aforementioned duo has thrust the court into quite the legal predicament. Chief Judge Lamberth has cited the 1995 Dickey-Wicker Amendment, which made illegal the use of funding from the government for practices that entailed embryo destruction, in order to justify his decision to impose this suspension of financial

support for hESC. Lamberth has even ventured so far as to suggest the possibility that all government aid provided by the previous two presidential administrations has been in violation of this amendment. While one can rarely forecast with any considerable certainty the outcome of an issue in which hESC is involved, it will certainly be interesting to see how the Justice Department will attempt to juggle the unenviable task of quelling the incensed outcries of many of the nation’s research institutes while also upholding their duty of rigidly adhering to the guidelines, policies, and regulations written into law by our nation’s Congress.

-Jonathan Bekisz, University of Pennsylvania http://news.sciencemag.org/scienceinsider/2010/08/injunction-leavesstem-cell-rese.html http://news.sciencemag.org/scienceinsider/2010/09/judge-upholds-stemcell-funding.html

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Volume VI Issue ii

The Benefits of Concierge Medicine

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Access to health care services remains a commonly debated bioethics issue. Primarily we ask whether healthcare is a basic human right or a privilege. This issue becomes especially poignant when discussing the rise of concierge primary care systems. Concierge medicine or boutique primary

care is a system that requires the patient to pay an annual fee or retainer to receive enhanced and efficient care from a physician. In this NYT article there are obvious differing of opinions, the one’s who have extolling the system as a way to create a relationship with a physician who is always on call for you and those without who may be “uncomfortable with the idea that those who can afford it get better care, while those who cannot pay do not” as one patient stated.

However, in practice, it seems that concierge medicine may be beneficial and ethical. A group of doctors in Boston argue that doctors and patients of all backgrounds may benefit. The Tuft Medical Center uses the annual fees to bolster their traditional general medical practice rather than going directly to the physician. With this change, Dr. Fairchild, the chief medical officer at Tufts Medical Center states that he is “comfortable that the practice has been set up ethically”. This would therefore benefit all patients, not only those who can afford it.

-Leila Glass, University of Pennsylvania http://www.nytimes.com/2010/08/26/health/26pauline-chen.html?_ r=1&src=me&ref=health

Sick Kenyan Children Suffer Without Proper Pain Medication The Human Rights Watch (HRW) released a report on September 9, 2010, which found that most Kenyan children with cancer or HIV do not receive pain medication.

Although the World Health Organization recognizes oral morphine as an essential drug for the treatment of pain, the medicine is only available in seven out of the 250 public hospitals in Kenya.

The demand clearly outmatches the supply; there are approximately 1.5 million Kenyans with HIV, including 150,000 children, but the amount of morphine currently in stock could only treat 1500 AIDS or cancer patients.

Other pain medications, such as Ibuprofen, are sometimes utilized, but, according to numerous testimonies, are ineffective substitutes against chronic pain due to cancer or HIV. Currently, Kenya’s palliative care services provide counseling and support, but do not have programs for pain treatment for children. Furthermore, healthcare workers seem reluctant to provide treatment to children when it is available. A doctor in Nairobi states, “People have no problems with relieving pain in adults with morphine, but when it comes to children, there is always some reservation.”

Stakeholders have taken steps to rectify the situation.

The Kenyan government has established several palliative

care units in the past few years, and the US President’s Emergency Plan for AIDS Relief (PEPFAR) spent over $530 million in 2009 to support palliative care services in Kenya.

Still, many of these facilities lack treatment for chronic pain, and, according to HRW, much more needs to be done to stop sick children from suffering needlessly.

-Fahim Pyarali, University of Pennsylvania http://www.hrw.org/en/news/2010/09/02/kenya-provide-treatmentchildren-pain

On-line courses with short intensive on-site courses, practica and capstone at Union Graduate College and Mount Sinai School of Medicine Certificates in Clinical Ethics are recognized for credit by the Penn MBE Program.

Penn Bioethics Journal

Certificates in Bioethics with Specializations in Clinical Ethics and Research Ethics and Master of Science in Bioethics

Accepting applications from highly qualified students with a passion for bioethics

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Presidential Bioethics Commission In 2009, University of Pennsylvania President Amy Gutmann was appointed by President Barack Obama to chair the Presidential Commission for the Study of Bioethical Issues. The Penn Bioethics Journal interviewed President Gutmann about her role and the goals of the commission.

Penn Bioethics Journal

Volume VI Issue ii

Why did you decide to accept the position as Chair for the Presidential Commission for the Study of Bioethical Issues?

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I was honored to have been asked by President Obama to chair this Commission. As a political philosopher and scholar of ethics, I believe that transparent, evidence-based deliberations with ample opportunity for public input can strengthen a healthy democracy. Chairing a group that is charged with advising the government on areas that affect so many people’s lives was a responsibility I was happy to accept. I also think that when the President asks, I should serve if I can.

You are praised for your strength as a communicator, how do you feel this will help you with the commission? What do you believe your strongest asset will be? What do you feel your role is?

I believe in promoting public discussion and improving public understanding of complex issues such as health care, science, and emerging technologies. In our current political climate, this sort of open and respectful discussion has become perilously rare.

The best any democracy can do when considering complicated and important issues is to encourage open, transparent discussion among a diverse group of experts and others with a stake in the outcome.

That’s what our Commission is striving to do —and I think we are succeeding.

How will your position as chair of this commission affect Penn? What influence does coming from Penn with the largest Bioethics Center in the country have on the commission and in return

what impact do you think the Commission will have on the Center for Bioethics?

Many of the Commission’s members, including myself, are fortunate enough to serve at world-class universities with leading bioethics centers, and schools of medicine, arts and sciences, engineering, and law. Penn Law Professor Anita Allen also is a Commission member. These affiliations certainly benefit our work. Penn’s interdisciplinary Bioethics Center is a huge resource.

In our public meetings on synthetic biology, we’ve invited the perspectives of physicians, scientists, ethicists, policymakers, representatives of faith communities, and many others with expertise in these areas. We’ve included bioethicists and physicians from the most outstanding public and private universities in the nation, including Penn.

Your background lies heavily in philosophy and particularly in ethics as you served as the president of the American Society for Political and Legal Philosophy and as a founding member of the Association of Practical and Professional Ethics. From where did your interest in bioethics more specifically stem?

Bioethics is a thread that has been woven through my scholarly career, as I’ve written and taught extensively at the intersection of ethics and public policy. My first publication in the early 1980s in bioethics was a widely reprinted article on equal access to health care.

I am a fellow of the Hastings Center, perhaps the most prominent bioethics research institute in the United States, and earlier in my career I served as its Vice President. In the 1990s, Harvard political scientist Dennis Thompson

Bioethics Commission and I co-authored a report, “Deliberative Democracy: The Case of Bioethics,” which explored how deliberative democracy can be applied to pressing matters in practical ethics, using bioethics as our paradigm case. I also taught a popular course on ethics and public policy for many years at Princeton, which launched many students into the theory and practice of bioethics.

Obama is said to have the “First Bioethics Presidency” which makes this the most critical commission yet, is that added pressure for you and the other members?

Well, there’s no question that President Obama is strongly committed to bioethics and that we are addressing issues that impact the lives of all Americans. As Commission members, we are focused on the socially and ethically responsible advancement of science, medicine and technology. We are also intent on ensuring that society benefits from new developments while appropriately managing potential risks. In addition to careful and thoughtful analysis of issues, we also have the opportunity to help President Obama strengthen science and healthcare policy by suggesting legal and policy actions to him and his advisors.

This commission was appointed primarily for the sake of giving a well-rounded view of bioethics to President Obama. Yet, bioethics is still an emerging field - does your commission have any plans on how to make it a better understood topic to Americans at large? How do you ensure that the public hears of the progress that you are making when you cannot directly facilitate or implement policy?

Let me give you an example of how Bioethics Commissions can have a direct impact on public policy and on public consciousness of bioethical issues. In 1979, the Ethical Principles and Guidelines for the Protection of Human Subjects of Research—also known as the Belmont Report— created an important framework for the discussion of ethical treatment of clinical research subjects. The report also offered a common vocabulary for how we can responsibly treat human subjects in clinical research during a time when this field was expanding rapidly and in ways that were difficult to predict.

We face a similar challenge today in burgeoning fields such as synthetic biology. We need to articulate a framework for the ethical consideration of this and other emerging biotechnologies.

We’d like to advance the conversation around emerging biotechnological issues and create recommendations that can have a lasting impact on the whole field.

Previous commissions have been largely influenced by religion, do you think it is an important component of bioethics?

We have consulted widely regarding synthetic biology, including inviting representatives of different faith communities to our meetings. Given the important role that faith communities play in our society, their inclusion is vital in helping the Commission fulfill its charge of offering recommendations that ensure socially and ethically responsible advances in science, medicine, and technology.

Volume VI Issue ii

Like the science, medicine, and technology that are its subject matter, bioethics is moving faster today than ever before, and will continue to face the challenge of combinThe more transparent and open our deliberations, and ing broad-based science and ethics education. As an exthe more input we receive from the public, the better our ample, consider recommendations will be. Desynthetic biology, which is the issue “As our nation invests in science and innovation mocracy demands that we inwe’ve been asked and pursues advances in biomedical research and vite perspectives of all kinds— from both experts in the to study by Presihealth care, it’s imperative that we do so in a re- subject and interested citizens. dent Obama.

Synthetic biol- sponsible manner.”

When people claim that ogy is a relatively -President Barack Obama the commission is too new field in itself, philosophical and not although it builds upon earlier breakthroughs in molecular biology and gegrounded enough in the reality of policy making netic engineering. and the fast pace at which technology moves, how Our task is to help President Obama and the public do you respond? better understand and help maximize the potentially great It’s not only possible, it’s also desirable to be philosophibenefits from synthetic biology, most of which won’t even cal while still staying grounded in the practical realities. In be seen until we get further down the road with the techfact, I’d argue you don’t want a commission that’s only able nology. We also need to determine how to minimize likely to do one or the other. risks in light of what we now know. In addition, we need to That said, our power ultimately lies in the reasonabledescribe our findings in a report that is publicly accessible.

Penn Bioethics Journal

Another thing that sets this commission apart from others is that there are fewer members. Is one reason for this that you would like the general public to be more involved in the happenings of the commission?

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Bioethics Commission

Presidential Commission for the Study of Bioethical Issues. Meeting at the University of Pennsylvania, September 13-14, 2010. From left to right: Dr. Amy Gutmann (University of Pennsylvania President and Commission Chair), Dr. James Wagner (Emory University President and Commission Vice Chair), Dr. Jonathan Moreno (David and Lyn Silfen University Professor of Ethics, University of Pennsylvania), Arti Rai, J.D. (Elvin R. Latty Professor of Law, Duke University)

ness of our recommendations. Then we have to leave it to those whom we advise. Our report soon will be out there in the public domain. We will have developed our recommendations by taking into account all the facts, the context, and the widest range of perspectives. This quality of the report will have value in itself. We will be giving the most practical advice possible, consistent with our mandate, to recommend ethically and socially responsible policies to the President.

If our Commission can help establish a good framework to guide these evaluations, we will have helped strengthen both democratic deliberation and public policy in the longterm in this age of rapid technologic advancement. This is both an exciting—and a worthy—challenge to meet in six months time!

Bioethics is an expansive topic and yet at the moment you are focused on synthetic biology. We know that the President asked you to issue a report on this topic, and yet there are so many other items that need discussing as well. How do you pick and choose what is most important?

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Is it frustrating when technology moves quicker than deliberation and policy? You have six months to deliberate on synthetic biology but do you worry that a breakthrough before then could set a tone of precedent for the use of new technology?

We will consider where we can provide the most “value added” in a timely fashion among the wide range of issues facing the country in science, technology, and healthcare.

The President has been clear in his first charge to the Commission: to provide practical, ethical advice on synthetic biology. Once we complete this report, we will take on another topic that can further our nation’s essential commitment to science, healthcare, and technology—and do so in a socially responsible and ethical way.

The rapid pace of technological developments is one reason we are working to make recommendations that will have a lasting impact and that take lasting values such as justice, stewardship, and deliberation into consideration so that they may be applied no matter what issues emerge.

Recent advances in synthetic biology notwithstanding, we will continue to face the challenge of evaluating emerging technologies, maximizing benefits while minimizing risks.

1970

1980 National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research

Ethics Advisory Board

President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research

1990

2000

Biomedical Ethical Advisory Committee

President’s Council on Bioethics

NIH-DOE Joint Working Group on Ethical, Legal and Social Implications (ELSI) of Human Genome Research

Advisory Committee on Human Radiation Experiments

National Bioethics Advisory Commission

9 Timeline of Bioethics Commissions. Adapted by Andrew Jakubowski.

2010

President’s Council on Bioethics

Editorial

A Brief History of Organ Transplantation Sterling Sims‡

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‡ University of Pennsylvania, simssa@sas.upenn.edu

very beneficial. In 1962, Dr. Murray, who was on the team that operated on Richard Herrick in 1954, performed the first successful kidney transplant from a cadaver to a living human (Hakim and Papalois 2003). He used the new drug, azathioprine, and steroids to help the recipient’s body accept the foreign organ. The patient survived for over a year without having to be on dialysis, which was by far the longest someone had survived with a kidney from a cadaver.

Dr. Murray’s accomplishment encouraged other physicians to investigate the possibility of using the organs from a corpse in organ transplantation surgeries. Furthermore, the supply of useable organs immediately increased since doctors no longer needed living donors. Finally, the invention of immunosuppressive drugs eliminated the requirement that a donor and recipient be extremely closely related. In 1983, Cyclosporine, an extremely effective immunosuppressant that physicians still use today, was invented (www. donatelifeny.org/transplant/organ_history.html).

In 1968 controversy suddenly surrounded organ transplants as the demand for organs was rapidly increasing and the supply remaining stagnant. That year, the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Death declared a new way to define death in the United States. Previously, a person was pronounced dead when his or her heart stopped beating and he or she could no longer breathe voluntarily. The Ad Hoc Committee, however, declared that “brain death” was another way to determine the death of a human being.

The committee offered four new standards to determine death: unreceptivity and unresponsitivity, no movements or breathing, no reflexes, and a flat electroencephalogram (Stevens 2000). This redefinition of death had organ transplant advocates excited as it meant that more organs would become available. Organ transplant operations had drastically improved since 1962; doctors could now successfully transplant human livers, lungs, and even hearts. The latter operation having been first performed one year earlier in 1967 in South Africa. The ethical dilemma involving the redefinition of death and organ transplants hinges on the fact that a healthy human being could donate one kidney and still live normally with one functioning kidney. On the other hand, a living human can obviously not donate his or her heart and survive. The best candidates to donate hearts to those in need were patients that were brain dead, on life support, but had healthy hearts. Before the Ad Hoc Committee’s ruling, surgeons had to wait in frustration for

Penn Bioethics Journal

When Austrian physician Eduard Zirm transplanted the corneas of an eleven-year-old boy to a day laborer, Alois Glogar, who had recently become blind in an accident while slaking lime, on December 7, 1905, he made a breakthrough in the science of organ transplantation (Armitage, Tullo, and Larkin 2006). This surgery was one of the first successful attempts on record to transplant a body part from one human to another.

The next 50 years saw many failed human organ transplants as well as several attempts to transplant animal organs into living human bodies. In 1952, a team of doctors transplanted a kidney from a woman killed in an automobile accident to her son, but the boy’s body rejected the organ after it functioned for 22 days. Two years later, however, Drs. Joseph E. Murray, Hartwell Harrison, David Hume, and John Merril successfully performed the first kidney transplant from Ronald Herrick to his identical twin, Richard. Richard lived for eight years after the operation with a fully operating kidney (Hakim and Papalois 2003).

This medical landmark led to the rapid increase in interest in organ transplantation surgery although it brought with it a few caveats. First of all, physicians only knew that it was possible to successfully transplant an organ from one identical twin to another without the recipient rejecting the organ. Therefore, organ transplants were performed sparingly until more knowledge could be gained.

It is important to understand a brief history of the practice in the United States. Although transplanting a kidney from one twin to another was revolutionary, it was frustrating for doctors on another level. Physicians had high hopes for organ transplantation but still didn’t know how to get a recipient’s body to accept the donor organ unless the two people shared the same DNA. Several years later, in 1959, physicians began experimenting with a drug called 6-mercaptopurine in kidney transplant operations between dogs (Hakim and Papalois 2003). The drug had some success as an immunosuppressant, extending the time that a new organ would work in a recipient’s body. In 1960, the drug was used on humans for the first time but with mixed results.

Although it could prevent the body from rejecting new organs, doctors had a difficult time distinguishing between a helpful dose and a harmful, perhaps even lethal, dose.

Soon, however, scientists invented a drug that was derived from 6-mercaptopurine called azathioprine, which was easier and safer to administer. This new drug was used in an extensive study on dogs and the results were

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Editorial

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History of Organ Donation

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1540 - An act of Parliament allowed some surgeons in England to have access to the corpses of criminals from the gallows for the purpose of studying anatomy through dissection.

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1700s - As physicians began to learn about the marks that pathologies left on bodies, performing autopsies became increasingly important in their education.

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1905 - Using his new technique to prevent grafted blood vessels from leaking, Alexis Carrel and his colleague Charles Guthrie experimented with transplanting organs and dogs.

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1951 - Sir Peter Brian Medawar had identified rejection as an immune response, and began experimenting with immunosuppressive drugs.

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1954 - The identical Herrick twins underwent surgery so that one brother’s kidney could be transplanted to aid his ill brother. The recipient twin lived for another 8 years.

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1964 - The Helsinki Declaration recognized a category of ‘therapeutic experiments’ which required no animal experimentation evidence to be exhibited before experimenting on humans including transplants.

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1967 - The world’s first heart transplant was performed in South Africa, although the recipient died 18 days later due to rejection.

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1968 - The Uniform Anatomical Gift Act was drafted as a model for states to adopt, which all 50 had done by 1971. It made the rules that applied to cadaver body donation apply to cadaver organ donation.

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1968 - Jean Dausset discovered that rejection could be caused by organs having a tissue type incompatible with their donor.

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1976 - France enacted an opt-out policy for organ donation, such that people were assumed to be willing donors unless they (or their family) said otherwise.

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1983 - Cyclosporin, the most effective immunosuppressant yet, was approved by the FDA, the moratorium on heart transplants was lifted, and transplantation rates greatly increased

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1984 - The National Organ Transplantation Act attempted to organize the ad hoc systems that had arisen to connect organ donors and recipients, especially because tissue typing required more sophisticated arrangements. As a result, the United Organ Sharing Network was born in 1987.

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1993 - A large transplant center developed a protocol (called “non-heart-beating-cadavers” or NHBD) to declare patients dead even if they could be resuscitated, as long as they had signed a ‘Do Not Resuscitate’ order.

References Baker, R. P., & Hargreaves, V. (2001). Organ Donation and Transplantation: A Brief History of Technological and Ethical Developments. In W. Shelton, & J. Balint (Eds.), Advances in Bioethics - Volume 7: The Ethics of Organ Transplantation (pp.

1-42). Kidlington, Oxford: Elsevier Science Ltd. Diethelm, A. G. (1990, May). Ethical decisions in the history of organ transplantation.

Annals of Surgery , pp. 505-520.

Summarized by Susan Anderson.

a patient to be ruled dead before taking the heart, which seriously minimized its effectiveness in the recipient’s body.

The new definition of death allowed surgeons to keep irreversibly comatose patients on life support while their hearts were removed so to ensure the heart would not be ruined.

In an effort to avoid conflicts of interest, a physician that ruled a patient dead could not be involved in a heart transplant that used said patient’s heart.

Another notable event in the history of organ transplantations occurred July 30, 1968. On this date, the Uniform Anatomical Gift Act was enacted in the United States.

This act stated that anyone of the age of 18 could donate any or all of his or her organs upon death. The donor could specify if he wanted his organs to go to a specific donee or if the hospital could use them under its best discretion. The donor received a document that officially stated his status as an organ donor (http://www2.sunysuffolk.edu/pecorip/ SCCCWEB/ETEXTS/DeathandDying_TEXT/UAGA. htm).

In the late 1960s and early 1970s, kidney transplants were fairly common and successful. One of the biggest barriers patients with kidney failure faced, though, was the enormous cost required to receive a transplantation surgery. In 1972, the government passed the End Stage Renal Disease Act (ESRD), which stated that Medicare and Medicade would pay for dialysis treatment and organ transplantation surgery for those patients that could not afford the payments themselves (Diethelm 1990). This act was very beneficial to many people who required but could not afford kidney treatment. It also became, and remains, a somewhat controversial act in terms of ethics. Kidney dialysis is the only treatment that the government will pay for regardless of someone’s financial situation or insurance coverage.

In 1984, the United States government passed the National Organ Transplant Act (NOTA). This act affected organ transplants in many significant ways. First of all, it made it illegal to buy or sell organs in the United States.

Secondly, a large, non-profit organization called the United Network for Organ Sharing (UNOS) was founded. This organization was created to oversee several regional nonprofit organizations called Organ Procurement Organizations (OPOs). In 1998, the act was amended and hospitals were required to contact OPOs when possible organ donors died or were near death. The OPOs were also designed to promote the donation of organs and tissues and to provide educational programs to hospitals. In addition to overseeing OPOs, UNOS maintained the national waiting list for organ donation and created a points system that was designed to fairly distribute organs to the most deserving donees. When an organ that has potential for donation becomes available, the hospital gives it to an OPO, which matches the organ with the most deserving recipient. The preliminary criteria that UNOS’s system uses to match organs with possible recipients are organ type, organ size, and blood type (Diethelm 1990). The next most important criteria are the distance between the organ and potential re-

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well (http://www.donatelifeny.org/organ/2007.html#us).

Since hearts, lungs, livers, and most organs other than kidneys cannot be obtained from living donors, many ill people depend on deceased organ donors. Additionally, although kidneys from live donors yield a slightly high rate of acceptance in the recipient, there are still risks, such as infection and long-term kidney failure for the donor that obviously don’t exist if the donated kidney is from a cadaver.

The worldwide organ shortage has caused a black market for organs to arise. Although there is no dependable data on organ trafficking, the World Health Organization and the governments of many countries have acknowledged that the illegal buying and selling of organs is indeed occurring. Some anthropologists, such as Nancy ScheperHughes, are extremely concerned with this growing black market and are working hard to put an end to it as fast as possible. In January 2009, Scheper-Hughes was interviewed by Newsweek and asked about her study of illegal organ trafficking. The famed anthropologist reported having traveled to many countries, including Brazil and several African countries, to investigate the black market for organs. In Istanbul, she pretended to be interested in buying a kidney from anyone willing to sell. She was able to find man willing to sell her a kidney for $3000 dollars after bargaining. The most startling part about Scheper-Hughes’ tale is that organ trafficking is not only occurring in third world countries. She reported that organ brokers will fly buyers to state of the art hospitals in the United States to have the transplants performed. She also noted that many American surgeons know when illegal transactions are occurring and simply ignore them. Although there has not been extensive research done regarding organ trafficking, it is finally receiving a decent amount of media attention and hopefully will be stopped in the near future.

Physicians have suggested several ideas to increase the number of organs available for transplant in light of the shortage that the entire world faces. Almost everyone would agree that education is the first step to improving most problems. UNOS is collaborating with physicians to improve the general public’s knowledge on organ donation and transplantation. It is important to educate everyone about the benefits of organ donation because even if someone is marked as an organ donor in his advanced directive or on his driver’s license, he may not become an organ donor upon death. This is because in some states, doctors are required to ask the families of recently deceased patients if they want their loved one’s organs to be donated.

Another strategy that has been proposed to increase cadaveric organ donations is mandated choice. The idea behind this strategy is that every American would be forced to decide whether or not to be an organ donor upon death and put this choice in writing, perhaps on his or her driver’s license. Under this plan, the decision made by an individu-

Penn Bioethics Journal

cipients, how ill the recipient is, and how long he or she has been on the waiting list. Finally, if the patient is healthy enough and willing to immediately receive a transplant, the OPO delivers the required organ to the patient’s location and the surgery is performed. All of this occurs at a fairly frenetic pace because organs cannot be stored for very long after they are removed from a cadaver.

The technology involved in organ transplantation has vastly improved since 1954 when a team of doctors operated on the Herrick twins and performed the first successful live donor organ transplant. Physicians can now transplant livers, lungs, hearts, pancreas, and intestines from cadavers to humans with a high rate of success.

Donors and recipients must be informed of every risk associated with giving up and receiving an organ, respectively, before physicians may proceed with the operation.

This is slightly more difficult than it sounds because the long-term health risks associated with donating an organ are largely unknown. Furthermore, children under the age of 18 must agree to donate as well as have their parents or legal guardians grant them permission.

There are only a few situations in which a living human can donate an organ to someone and go on to live a healthy life. The obvious primary organ that is transplanted from a live donor is the kidney, (although live donors may also offer bone marrow, a portion of their liver, or a lobe of their lung). Long-term studies have not shown that people who donate a kidney suffer health problems later in life necessarily. Problems can arise, though, if someone who has donated a kidney suffers from kidney disease later in life. Is this occurs, the previous donor ironically may need a transplant himself. Generally, when a kidney is donated from a living person, it is to a family member. There are some situations, however, where people choose to donate organs to strangers. These people are called “Good Samaritan” donors and choose to donate their organs for the simple reason of doing a good deed. Currently, people are creating websites, such as MatchingDonors.com where people willing to donate organs can meet others who are in need of a donation (Wax 2008). This can be problematic, because the donors may base their choice on who to donate to on social criteria rather than medical need. Conversely, those in need of an organ may be able to coerce potential donors into choosing them over another individual on such websites, and such behavior could fuel a black market.

Finally, in terms of an organ shortage, the waiting list for an organ transplant is approximately 100,000 people at any given time in the United States. In 2007, there were 28,352 organ transplantations performed from almost 15,000 living and deceased donors. Although this sounds impressive, 6449 people also died while awaiting an organ on the transplant list. The number of people that die while awaiting an organ for transplant is increasing each year as

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al would be final and the individual’s family would have no say in the matter. This plan promotes pure autonomy and from an ethical standpoint.

The third proposed plan is currently being used in many countries in Europe. It is called Presumed Consent and is based on the fact that everyone who dies wishes to be an organ donor unless stated otherwise by the person before death. This plan would be excellent for obtaining more cadaveric organs than are available now, but also has a few negative aspects. From a utilitarian standpoint, this is a wonderful idea. Everyone should donate their organs because it will do the most good for the greatest number of people in the long run. However, this plan also assumes that the vast majority of Americans are educated in all aspects of organ transplantation, which is definitely not true at this point in time. This strategy doesn’t promote autonomy as much as mandated choice because people would have to actively specify that they do not want to be organ donors instead of being forced to choose.

The final strategy for gaining more cadaveric organs is a very controversial, albeit potentially rewarding one.

This plan involves giving incentives to those who decide to donate their organs. Some incentives that have been discussed include helping the family of the departed with funeral costs, making a donation in the deceased person’s name, or offering recognition in the form of a memorial or plaque for organ donors. Although it is currently illegal to buy and sell organs amongst living people, there is no law restricting payment to families of deceased organ donors.

Funeral services, caskets, and burials are very expensive and the subsidization of these costs would be an enticing incentive. As is the case with most ethical debates, this strategy has its pros and cons. Monetary incentives are valued by everyone and therefore would certainly yield a higher rate of cadaveric organ donation than the current one. In ad-

dition, since the donor will be dead when the payment is given to his or her family, many would not see the act as coercive. Ethicists against this plan insist that incentives, no matter how big or small, sway some people to make decisions that they would otherwise not make (Bartels, Kahn, Paul, Abbot-Penny, and Valapour 2004).

The most important first step to take to promote organ donation is to further educate Americans about the benefits of being a donor. Hopefully the importance of organ donation will become more prevalent in the media in the near future. The risks of obesity have recently been discussed in the media often and awareness has increased as a result. In terms of choosing whether or not to become an organ donor, one possible alternative is the Europeanstyle presumed consent rather than mandated choice. Even though presumed consent is less autonomous, it could benefit society as a whole more. One reason possible caveat behind mandated choice is that in a sample survey in Texas in the 1990s, almost 80% of people questioned said that they would not donate organs (Bartels et al. 2004). If that average were the same in every state, the amount of organ donors would actually decrease in the United States.

About the Author

Sterling Sims is a Health and Societies major with a Bioethics concentration at the University of Pennsylvania.

Dr. Autumn Fiester is the faculty advisor for this paper.

She is the Director of Graduate Studies in the Department of Medical Ethics at the University of Pennsylvania School of Medicine and the Associate Director of the Penn Center for Bioethics.

References Armitage, W. J., Tullo, A. B., & Larkin, D. F. (2006). The first successful full-thickness corneal transplant: a commentary on Eduard Zirm’s landmark paper of 1906. British Journal of Ophthalmology, 90, 12221223.

Bartels D, Kahn J, Paul B, Abbot-Penny A, Valapour M. (2004). Ethics of Organ Transplantation. The Center of Bioethics. University of Minnesota. 22-23.

Diethelm, A. (1990). Ethical Decisions in the History of Organ Transplantation. annals of surgery, 211, 8.

Hakim, N., & Papalois, V. (2003). History of Organ and Cell Transplantation. London: Imperial College Press.

Interlandi, Jeneen. “Not Just Urban Legend .” Newsweek 10 Jan. 2009: n. pag. Not Just Urban Legend. Web. 23 Mar. 2010.

Organ & Tissue Donation - Statistics. (n.d.). NEW YORK ORGAN DONOR NETWORK @ http://www.donatelifeny.org. Retrieved December 15, 2008, from http://www.donatelifeny.org/organ/2007. html#us

Stevens, M. L. (2003). Bioethics in America: Origins and Cultural Politics. Baltimore: The Johns Hopkins University Press.

Transplantation - History of Transplantation. (n.d.). NEW YORK ORGAN DONOR NETWORK @ http://www.donatelifeny.org.

Retrieved December 15, 2008, from http://www.donatelifeny.org/ transplant/organ_history.html Uniform Anatomical Gift Act. (n.d.). Uniform Anatomical Gift Act. Retrieved December 15, 2008, from www2.sunysuffolk.edu/pecorip/ SCCCWEB/ETEXTS/DeathandDying_TEXT/UAGA.htm World Health Organization. Organ trafficking and transplantation pose new challenges. http://www.who.int/bulletin/volumes/82/9/ feature0904/en/index.html. 23 March 2010. Wax, Heather. Ethical concerns over organ donation sites (October 21, 2008). Science and Religion Today. Retrieved December 15, 2008, from http://scienceandreligiontoday.blogspot.com/2008/10/ethical-concerns-over-organdonation.html

Editorial

“My Brain Made Me Do It”: Can Neuroimaging Undermine the Case for Criminal Punishment?

Ilana Yurkiewicz ‡

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‡ Yale University, ilana.yurkiewicz@yale.edu

conscious mental status – of the accused, known in legal terms as mens rea, or “guilty mind.” Legal precedent confers criminal accountability unless there exist mitigating circumstances that challenge the “guilty mind,” including: one is forced beyond his control (e.g. another physically coerces him to pull a trigger), one lacks the general capacity for rationality (e.g. he cannot distinguish right from wrong), or one behaves under duress (e.g. he is at gunpoint) (Goldstein, 2003).

The use of neuroimaging in determining guilt should operate within these guidelines. Neuroscience should not engender fundamental changes in criminal law, but rather ought to function as an additional tool in understanding and applying established practice. That is, if neural events are theoretically shown to force action, remove rationality, or create duress, then an abnormal brain state may be a legitimate defense. To examine whether such mitigating neural equivalents indeed exist, we can propose a simplistic, yet effective, model of behavior: 1) root causes (either social or biological), which lead to 2) physical brain state, which leads to 3) behavior. We can examine this pathway using a “brain state” of aggression and behavior of murder as an example.

First, let us look at the transition from the first stage to the second stage. A variety of factors may be responsible for an aggressive brain state. As individuals clinically classified as aggressive have shown decreased activity in certain brain regions, such as the dorso-lateral prefrontal cortex and anterior cingulated cortex (Raine, 1997), we can define an aggressive brain as one that matches those studied patterns.

An aggressive brain could be due to childhood abuse. Or, an aggressive brain could be caused by a tumor pressing against the amygdala, such as that discovered in the case of mass murderer Charles Whitman (Batts, 2009). Is there a moral difference between these factors? In both cases, the result is an aggressive individual with an increased propensity to commit murder and the root cause of that aggression is beyond his or her control. If we do not accept a bad childhood as justification for murder, then it follows that we cannot accept a tumor.

Now, let us analyze the transition from the second stage (brain state) to the third (behavior). Those who assert that

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In 2009, 53-year-old Brian Dugan was sentenced to death for the rape and murder of a 10-year-old girl. The case led to major reform on the death penalty in Illinois (Tarm, 2009), but that was not the only reason it was memorable. The case also marked the first use of functional magnetic resonance imaging (fMRI) as evidence in court (Miller, 2009).

Functional magnetic resonance imaging is a procedure that can reveal the activity of the brain in real time. When a part of the brain is being used, it requires more oxygen to fuel its activity. As a result, blood flow to that region increases, and the oxygen-carrying molecule hemoglobin becomes deoxygenated as it delivers its fuel. An fMRI machine generates magnetic fields that can detect regions of deoxygenated hemoglobin. This information is then transmitted to a computer, which creates an image of the brain with the active regions lit up (Devlin, 2010). In the Dugan case, the defense used an fMRI to argue that the defendant had a psychopathic brain that led him to rape and kill (Gutowski, 2009). Though the defense did not save Dugan, many experts from both science and legal worlds hailed fMRI as a powerful new tool in criminal law.

The use of neuroscience in court is hardly new; techniques such as computed tomography X-ray and positron emission topography have been used for over a decade. The introduction of fMRI, however, promises to provide even more with its increased resolution and non-invasive methods (Feigenson, 2006). As neuroimaging advances, the hope is that it may provide evidence that will lend an air of scientific objectivity to the courtroom. Already, outside of the courtroom, fMRI studies of criminals have indicated reduced activation of the amygdala, the portion of the brain that controls empathy, in addition to parts of the frontal cortex responsible for impulsivity (Glenn, 2009). Findings like these raise the question: are criminals less culpable for their actions because of brain abnormalities beyond their control?

One central principle behind the U.S. system of legal punishment is the idea of retribution. Since a person is responsible for his actions, the logic goes, he therefore deserves to be punished for immoral ones. Thus, criminal law places great emphasis on the mental status – specifically the

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My Brain Made Me Do It

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neuroscience can excuse criminals essentially imply that these two stages are tantamount. The reasoning says that if we are our brains, and brains are physical structures ruled by natural laws, then our behaviors are also dictated by physical laws not amenable by free choice. Therefore, if certain brain states directly and invariably lead to certain behaviors, a defendant must be rendered not guilty due to the mitigating circumstance of being forced beyond his control.

Yet this is a deterministic viewpoint. It implies, in effect, that no one is responsible for anything. Clearly, the law as we know it cannot exist within this strict perspective.

Thus, the stability of the legal system as a whole depends on reconciling this determinism with notions of individual accountability. British philosopher Sir Alfred Ayer describes this balance convincingly in his 1954 essay, “Freedom and Necessity,” with the proposal that even in a deterministic world, a person can still act freely (Ayer, 1954). He writes: “to say that my behaviour can be predicted is not to say that I am acting under constraint.” In other words, just because actions are “causally determined” does not mean that people are forced to enact them. In fact, scientific studies have backed Ayer’s claim that the brain is generally not compelled beyond the jurisdiction of conscious input. A brief bit of time exists between the readiness potential of the brain and the actual behavior, during which the conscious can either act upon the potential or reject it (Haggard, 1999). Thus, one has the control to turn down the brain’s predisposition to make him want to perform an act, something Obhi and Haggard call “free won’t” (Obhi, 2004). Going back to our aggressive individual example, we can say he is capable of inhibiting his aggressive impulses. Even if his brain state is determined, the decision to murder is not.

Still, even if the aggressive person can curb his dangerous inclinations, one may argue that it is very difficult for him to do so. Due to his brain state, he faces a tougher task in exercising his “free won’t” and resisting his brain’s proclivity to want to kill. Yet, no two people undergo iden-

tical processes and struggles when making decisions. A very hungry person may have a more difficult time refusing the piece of cake before him but, in the end, hunger does not force the person to pick up his fork and put the cake in his mouth. His empty stomach does not remove his free choice.

As long as choice exists, difficulty in making a decision cannot be a legitimate defense for one’s action. Moreover, if it were, the door would be dangerously opened for similar excuses (“living in a poor neighborhood made it harder for me to resist becoming a drug dealer,” or “being surrounded by well-dressed friends made it harder for me to resist shoplifting”). As these excuses are not typically legitimate in court, the addition of a neural component does not make them any more legitimate.

As a result, brain states revealed by imaging may not be valid defenses for criminal behavior. An aggressive brain state may increase one’s propensity to commit a crime, but it does not pull puppet strings on the action. Behavior is the result of a complex interplay of numerous factors, of variable brain states that taken together lead to an individual’s decision on how to proceed. A propensity for aggression can be balanced, for example, by an awareness of the consequences of murder. Thus, a more aggressive brain contributes to – but does not dictate – the ensuing criminal act. As such, brain scans can only tell us about proclivity, not about guilt or accountability.

The use of neuroimaging in court should operate within the same legal guidelines that we currently use to define guilt. One is accountable for his criminal behavior so long as he possesses basic rational abilities, is not forced to commit the action, and is not acting under duress. The defense “I did not do it; my brain did” is valid only if a brain scan unambiguously illustrates one of the above mitigating situations. Neuroimaging may indeed prove valuable in that it offers advanced explanation for criminal propensity. What it does not offer is justification for subsequent criminal action.

References 1. Tarm, M. (2009, November 11). Brian Dugan Sentenced To Death For Rape And Murder Of Jeanine Nicarico. The Huffington Post.

Retrieved from http://www.huffingtonpost.com/2009/11/11/briandugan-sentenced-to_n_354267.html.

2. Miller, G. (2009, November 23). fMRI Evidence Used in Murder Sentencing. ScienceInsider. Retrieved from http://news.sciencemag. org/scienceinsider/2009/11/fmri-evidence-u.html.

3. Devlin, Hannah. Introduction to fMRI. University of Oxford FMRIB Centre Department of Clinical Neurology. Retrieved from http:// www.fmrib.ox.ac.uk/education/fmri/introduction-to-fmri.

4. Gutowski, C. (2009, October 30). Wired wrong? Dugan’s brain deficit to be explored. Daily Herald. Retrieved from http://www.dailyherald. com/story/?id=333022.

5. Feigenson, N. (2006). Brain imaging and courtroom evidence: on the admissibility and persuasiveness of fMRI. International Journal of Law in Context, 2(3), 233–255.

6. Glenn, A.L., Raine, A., Schug, R.A. (2009). The neural correlates of

moral decision-making in psychopathy. Molecular Psychiatry, 14, 5–6.

7. Goldstein, A. M., Morse, S. J., Shapiro, D. L. (2003). Evaluation of criminal responsibility. In Forensic psychology, 11 (ed. A. M. Goldstein), 381–406. New York: Wiley.

8. Raine, A., Buchsbaum, M. LaCasse, L. (1997). Brain abnormalities in murderers indicated by positron emission tomography. Biol. Psychiatry, 42, 495–508.

9. Batts, S. (2009). sniper in the tower: Brain Lesions and their Implications in Criminal Responsibility. Behavioral Sciences and the Law, 27, 261-272.

10. Ayer, A. J. (1954) “Freedom and Necessity” in Philosophical Essays, London: Macmillan.

11. Haggard, P., Eimer, M. (1999). On the relation between brain potentials and the awareness of voluntary movements. Exp Brain Res, 126(1), 128–133.

12. Obhi, S.S., Haggard, P. (2004). Free will and free won’t. American Scientist, 92, 358–365.

Award for Excellence in Undergraduate Bioethics

Placing the Patient at the Center of Care Mayme Marshall‡ Modern healthcare is preoccupied with scientific information (increasing the accuracy of diagnosis and treatment protocols) as a means to improve morbidity and morality outcomes. Physicians commonly use ‘information-based’ communication during patient consultations. These interactions are informative but lack the compassion and empathy that promote a strong and trusting relationship between physicians and patients. Alternatively, ‘patient-centered’ communication emphasizes empathetic, caring and trusting physician-patient communication. In addition to answering scientific questions, this type of communication promotes patient well-being and quality of life. Studies show that patients with high levels of trust in their physicians have better health outcomes than those who do not. To maximize the potential of positive health results, physicians need to practice patient-centered communication techniques in addition to improving diagnosis and treatment. Although this type of communication is not innate for many people, it has been demonstrated that empathetic and compassionate communication can be learned. Although many medical schools promote communication education, a standard curriculum promoting patient-centered communication needs to be implemented. Placing the patient at the center of care is essential to ensure adequate care for the ‘whole’ patient—body and mind.

dition to these communication techniques could greatly enhance a patient’s medical experience.

Beginning with historical proposals of patient-centered care and then progressing to the current state of medical practice, I seek to expose the current emphasis on information-based communication and scientific advancement to improve morbidity and mortality outcomes. With the support of patient surveys and studies, I shall demonstrate how patient-centered communication not only enhances quality of life but also improves patient health outcomes (Buckman, 2006; Bonds, 2004). Lastly, proposing that empathetic communication must be taught, I will suggest patient-centered models of care (such as the Patient-Centered Medical Home model) to supplement informationbased curriculum with empathetic communication training in clinical medicine (Peek, 2009).

The Historical Basis of Patient-Centered Care

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Healthcare models promoting a reform in communication and physician-patient interactions are sweeping the medical community. However, emphasizing the integral values of patient-centered care is not a new trend. As early as the 1900’s, physicians urged colleagues to uphold values central to a caring physician-patient relationship such as honesty, trust, and empathy (Rakel, 2007). Dr. Abraham Flexner and Dr. Francis Peabody are paradigm physicians who were able to achieve a balance between science and utmost patient caring.

Dr. Flexner’s early campaign to combine technological advancements with empathetic communication illus-

Penn Bioethics Journal

Health is important to all people. When disease, injury, or illness impedes an individual’s ability to function optimally, medical attention is sought to regain or stabilize health. It is the primary goal of healthcare to improve morbidity and mortality outcomes. In aiming to improve these outcomes most of mainstream medicine utilizes scientific information to increase the accuracy of diagnosis and effectiveness of treatment. In this context, the physician-patient interaction is exclusively focused on the implications of diagnosis, explanation of treatment options, and discussion of patient symptoms – I refer to this as ‘information-based’ communication (Bensing, 2008).

In this paper, I contest that information-based physician-patient interactions are incomplete because they do not emphasize subjective patient well-being and quality of life. These aspects of the patient experience are enriched by honest, trusting, and empathetic interactions. I have defined physician-patient interactions encompassing honesty, empathy, and trust as ‘patient-centered’ communication.

Patient-centered care is characterized as a unique focus on the patient. Bearing in mind an individual’s values and emotions, treatment options are tailored specifically to each patient. Unfortunately, this type of communicating is not innate for many people, including physicians. In order for physicians to facilitate patient-centered communication, they need to learn to perceive patient cues, practice individualized and real-time reactions to these cues, and understand the magnitude of physical and emotional patient transformation throughout treatment (Bovinci, 2008). A physician with knowledge of bioethical principles in ad‡ University of Washington, mayme@u.washington.edu

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trates that this is not a new struggle for physicians. In the 1900’s, Dr. Abraham Flexner visited every medical school and issued a report regarding the state of medical education (Cooke, 2006). Dr. Flexner called for a curriculum that emphasized scientific prestige as well as “clinical reasoning, practical skill, and the development of character, compassion, and integrity,” (Cooke, 2006). Just 15 years after he issued his report, Dr. Flexner identified the quest for scientific advancement was excluding the equally important “social and humanistic aspects” of medical education. Rather than solely focusing on scientific advancements or prognosis of the patient, he encouraged physicians to invest in patients’ lives long-term in order to see improved interactions and ease patients’ concerns. Throughout the years, physicians like Dr. Flexner have strived to incorporate caring communication into medical treatment and training.

Dr. Francis Peabody, known as a model physician for his patient-centered care, introduced a more holistic approach to medicine. Rather than isolating a specific organ when developing treatments, Dr. Peabody encouraged physicians to understand the patient as a whole. In his 1927 essay, The Care of the Patient, Dr. Peabody sought to redirect the fragmented medical system toward general, personalized treatment. He promoted the idea that “it is more important to know what sort of patient has a disease than what sort of disease a patient has,” (Rakel, 2007). With lavish amounts of time and compassion he built trusting personal bonds with his patients. Learning a lesson from history, modern physicians need to recognize patients as individuals not merely as problematic symptoms. To improve health outcomes, enrich patient experience and well-being, policy needs to be implemented that replicates these paradigm models of care.

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The Trend Towards Scientific Advancements: Current Medical Approach

As technology improved throughout the 20th century, the medical community placed a higher priority on scientific advancements than on cultivating the skills needed to develop strong physician-patient relationships (Cooke, 2006). The scientific focus improved treatment regimes and the accuracy of diagnosis but shifted some physicians away from the ‘Peabodian’ ideals of utmost patient caring. Today, to be considered accomplished, physicians and researchers alike are pressured to publish. It seems that “research productivity” has become the litmus of achievement within the medical community with less emphasis on the dynamics of the physician-patient relationship (Cooke, 2006).

According to a recent study, although there are not fewer physician-patient interactions or opportunities for patients to speak in consultations, there has been a marked shift toward information-based communication—deemphasizing the importance of patient-centered interactions (Bensing, 2006).

A sixteen-year study (1986-2002) traced the trend of different communication types in general practitioner consultations with hypertension patients (Bensing, 2006).

Video-recorded patient interviews were analyzed and separated into amounts of physician versus patient speaking and types of communication (information-based versus patientcentered.) Physicians in 2002 provided a greater amount of information than physicians in 1986, but communication veered away from “psychosocial questioning and emotional responsiveness.” In 2002, the physician-patient interaction attained a much more “businesslike atmosphere” (Bensing, 2006).

The researchers conducting the study observed that as physicians interacted more with computers during the consultations, the patients participated less in conversationraising fewer questions and personal concerns regarding treatment. The researchers concluded there has been a “shift towards a more rationalized, biomedically-oriented health care, based on protocols and guidelines” (Bensing, 2006).

Therefore, advancements, or perhaps unfamiliarity with technology disrupt physicians’ ability to relate, empathize, and facilitate unhindered communication. This study supports my claim that current physician-patient communication is information-based. Patient-centered and empathetic responses recognizing the emotional burden and individual concerns of the patient are not routinely practiced (Bensing, 2006).

Jay Katz dramatically states that patient “silence only deepened once laboratory data were inscribed in charts and not in patient’ minds, once machines allowed physicians’ eyes to gaze not at patients’ faces but at the number they displayed, once x-rays and electrocardiograms began to speak for patients’ suffering rather than their suffering voices” (Katz, 2009). Technological advancements have furthered the goals of modern medicine by developing a multitude of effective treatment plans, greatly improving patient prognosis and increasing the accuracy of early detection.

However, this focus on science has drastically affected the depth and openness of physician-patient interactions.

Patient-Centered Communication Improves Health Outcomes

Physicians have focused on scientific advancements to minimize illness and premature death. However, several studies indicate that a highly trusting connection between physicians and patients actually improves health outcomes (Colliver, 1998; Christenfeld, 2000). Perceived patient trust is used to indicate the strength of the relationship between the physician and patient. Increasing trust or connectivity statistically suggests the patient will have better health. A strong physician-patient relationship encompasses patient compliance, openness, and trust. Patient compliance is generally observed when there are amble opportunities for the patient to give feedback and suggestions. Furthermore, a long-standing relationship between a physician and a patient can build an atmosphere of accountability.

A telephone survey of three hundred and twenty-six individuals diagnosed with diabetes mellitus shows that patient trust is associated with self-management ability (Bonds, 2004). Diabetes is a particularly useful disease

Placing the Patient at the Center of Care

The primary goal of medicine should not merely be to improve disease and death rates; the medical community should also be interested in the subjective patient wellbeing and quality of life. In addition to improving health outcomes, patient-centered care investigates the emotional journey of a patient throughout treatment and helps patients “re-engage in life realistically and confidently after

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Patient-Centered Models of Care Promote Patient Quality of Life

an illness or injury” (Peek, 2009). In order to facilitate this, physicians cannot just treat disease without considering the physical and emotional health of the patient. An empathetic, caring, and honest environment gives patients an avenue to express their emotional and physical transformation. The open environment facilitated by patient-centered communication enhances quality of life.

In a study conducting a secondary analysis of taperecorded interviews, women receiving their last round of chemotherapy for breast cancer expressed the dynamic physical and emotional changes they experienced throughout treatment (Boehmke, 2006). Many women expressed that being diagnosed with cancer shattered their daily lives.

They described their feelings as an “erasure of self ” and the women commonly felt that their bodies had betrayed them (Boehmke, 2006). As treatment ceased, the need to reconstruct their identity, rebuild relationships, and reintegrate into society proved to be as great of an undertaking as the chemotherapy. As the women attempted to transition back into ‘normal’ life, emotions such as fear, abandonment, loss of identity, and poor body image were common among the women. During the time of treatment, the regularity of hospital visits for therapy caused some women to discard normal routines. Post-treatment, without the permanent presence of physicians’ watchful eyes to ensure healthy conditions, some women feared relapse and regrowth of cancer (Boehmke, 2006).

Complete patient care includes transitioning the patient through diagnosis, treatment, and therapy, then fostering the reintegration into a healthy lifestyle. When providing optimal care, it is essential that physicians understand the magnitude of physical and emotional patient transformation. Physicians are called to practice a model of care that emphasizes patients’ needs, emotions, lifestyles, and values in addition to diagnosis of symptoms and treatment options. The Patient Centered Medical Home (PCMH) model aims to eliminate the fear of abandonment women like these experience, help ease patients back into healthy lifestyles, and incorporate physical as well as psychosocial healing into care (Peek, 2009).

The PCMH model incorporates an on-going relationship with a personal physician who leads a team of medical professionals involved in ‘whole-person’ oriented patient care. The long-term relationship with a primary care physician would offer stability to the precarious world of cancer survivors. Extending treatment past the disease at hand to additional mental, physical, social or cultural complications, the PCMH model and integrative medicine encourages physicians to “look beyond care of conditions to the care of persons, and to look beyond disease-specific care management protocols to master generic practices of care management across whatever conditions the person may have” (Peek, 2009).

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to analyze the importance of patient compliance because treatment requires significant lifestyle changes and a strict schedule of self-care tasks (checking blood sugar levels, taking medication etc.) The study looks specifically at patients’ trust of their physicians, perceived patient hassle and difficulty to complete care. The researchers found that “higher levels of trust were associated with lower reported levels of hassles, lower self-reported difficulty in completing care activities, and improved self-reported global ability to take care of diabetes” (Bonds, 2004). This suggests that maintaining a trusting physician-patient relationship greatly benefits patients’ ability to care for themselves and ultimately improve overall health outcomes.

Researchers hypothesized active patient engagement in the treatment plan allowed the patient to manipulate the plan of care so as to decrease “hassles” to their daily lives.

By minimizing inconvenience, the patient was able to enjoy a better quality of life. Another possible explanation of these results is that physicians who encourage patient participation not only build a trusting relationship with the patient, but also develop patient accountability- minimizing a patient’s tendency to stop self-care if conditions do not immediately improve. Perhaps with increased patient trust, patients have longer endurance to observe gradual improvement of results. Therefore, the honest deliberation between physicians and patients enables them to jointly develop a treatment plan that minimizes patient inconvenience, maximizes patient quality of life and increases patients’ willingness to continue with treatment. This increased patient compliance and adherence to the treatment plan improves health outcomes by ensuring that the patient is receiving the care necessary to regain good health.

The most significant results of this study are observed through juxtaposing health outcomes of patients with limited trust to patients with a high degree of trust. Elevating trust beyond the baseline level resulted in marked health improvement (Bonds, 2004). Supplementing respectful, yet distant interactions with the amount of trust necessary to establish a personal relationship greatly improved health outcomes. Therefore, it is not enough for physicians to simply be informative in patient interactions. To maximize the potential of health outcomes, a physician must integrate a caring atmosphere and empathetic responsiveness into the physician-patient relationship. Patient-centered communication requires a much higher level of trust than information-based communication and stretches physicians to actively engage patients in a caring manner.

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Patient-Centered Communication Must Be Taught

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To implement patient-centered care into medical practice, physicians need to be taught the skills to facilitate honest, trusting, and empathetic communication. According to a study conducted by Levinson, Gorawara-Bhat, and Lamb (2000), only 21% of primary care physicians and 38% of surgical physicians responded to patients’ emotional cues during consultations. This statistic suggests many physicians do not have adequate skills to perceive patient emotions. For many people, emotional responsiveness does not come naturally. Whether compassion like this could be learned was tested in a study conducted by Bovinici (2008).

The results showed physicians who participated in a training intervention program improved 37% from their baseline empathetic response rating (Bovinci, 2008).

As stated previously, patient-centered communication is not innate and must be learned. Despite the multitude of positive consequences of patient-centered communication, there is no current implementation of patient-centered models of care. Non patient-centered models do not emphasize patient emotions and physician empathy. Although treatment is essential to maintain comfort and prolong life, strategies aiding in the grieving process are similarly influential. By incorporating physician empathy, recognition of patient emotion, and compassionate communication into end-of-life care, both the patient and family have an improved experience. Although magnified through the raw emotions in an end of life transition, caring for the whole patient- body and mind- is imperative in all healthcare situations.

In order to maintain a successful relationship, physicians must recognize and validate the patient’s emotions before discussing treatment plans. Many physicians have the unfortunate obligation to impart bad news to patients and families. As previously emphasized, few physicians have the skills to compassionately facilitate these conversations. Dr. Robert Buckman, an oncologist, contends that a patient’s perception of care is largely due to the physician’s ability to communicate. A physician seeking to improve patient interactions should include patient-centered communication- empathetic and caring responses to patient emotions.

Dr. Buckman states, “The success or failure of a clinicianpatient interaction is dramatically affected by the way the patient’s emotions are heard, acknowledged, and dealt with” (Buckman, 2006).

An example of how compassion can be taught, Dr. Buckman’s three-step method aids physicians in relaying bad news. First, the physician needs to identify the patient’s emotional state. Second, the physician must identify the root of those emotions and when those emotions arose. For example, when observing a shocking radiograph or test result, the physician should understand and anticipate a patient’s emotional response. Third, they must connect the patient’s display of emotion with the likely cause.

This validates the patient’s feelings and portrays the physician as an effective listener. Although Dr. Buckman’s three-

step method is quite simple, it is paramount to respond to patient emotions before explaining treatment options or clinical plans.

Current Curriculum and Patient-Centered Movements

According to the 2008 US News and World Report rank of medical schools, the University of Washington (UW), Oregon Health and Science University (OHSU), and University of North Carolina (UNC) were ranked the top three medical schools for primary care. Due to their excellence, these schools are models of the best-available training for physician-patient interactions. Looking at course descriptions (non-science, communication, and/ or clinical-based), it is evident there is not a standard curriculum for communication skills, empathetic sensitivity or building trusting relationships. The University of Washington requires first-year courses introducing students to clinical medicine through patient interviews and preceptorship/ mentorship opportunities (UW Medicine, 2009). The University of Washington also provides courses in medical ethics, spirituality in healthcare, and enriching end of life care.

OHSU offers first-year students a ‘Structural Curriculum and Continuity Preceptorship’ program that encompasses a multitude of topics such as ethics, behavioral medicine, health promotion, and patient examination (OHSU School of Medicine, 2009). The University of North Carolina provides first-year students with an introduction to clinical medicine and application, as well as a course on Medicine and Society (UNC School of Medicine, 2009). All three of these schools incorporate opportunities to observe and apply physician-patient interaction skills, reinforce professional moral standards, and emphasize the importance of medical ethics (among other things) in medical student education. However, there is a major need to establish a standard curriculum among all medical schools that teach prospective physicians skills in caring communication, empathetic responses and maintaining trusting relationships.

In order to facilitate caring communication, physicians need to be masters of communication skills: astute at emotional perception, reacting to individualized responses, and maintaining an atmosphere of caring. There needs to be a greater emphasis of these skills in medical education to promote the importance of patient-centered care. Implementing communication skills assessments prior to graduation, a nationally required standard curriculum of interactive patient caring or other strategies needs to be established to ensure that medical students acquire the skills to become patient-centered physicians.

Fortunately, the development of patient-centered medical models are currently at the heart of debate within the medical community. In February 2009, the Institute of Medicine and The Bravewell Collaborative launched a summit on Integrative Medicine and the Health of the Public. As defined by the Institute of Medicine, Integrative Medicine strives “to create a seamless engagement by patients and caregivers of the full range of physical, psycho-

Placing the Patient at the Center of Care logical, social, preventive and therapeutic factors known to be effective and necessary for the achievement of optimal health” (Summit IM & Health of the Public [Bravewell], 2009). In attendance of the three-day event were “distinguished researchers, practitioners, and leaders” with the goals of presenting the “vision, challenges, evidence base, and opportunities for integrative medicine to improve health care in the United States” (IM Summit Webcast, 2009).

In conclusion, a trend back to the core values of patientcentered care Dr. Flexner and Dr. Peabody urged their colleagues to adopt is a step toward a holistic approach of medicine. Patients’ perceptions of physicians are improved through increasing patient trust, safeguarding physicianpatient communication, and emphasizing physician empathy. The patient-centered care model proposes a form of treatment that not only improves physician-patient interactions but also results in improved health outcomes for

the patient, smoother transitions post-treatment, and better end of life care. With this resurgence of patient-centered models of care, physicians need to be strong communicators and have an astute ability to read patients’ emotional cues. Increased educational opportunities are necessary to ensure physicians are equipped with the skills to not only recognize potential patient unrest, but additionally individualize empathetic responses and treatment options.

The time has come to heed the advice of Dr. Flexner and Dr. Peabody and implement the policy necessary to assert a standard of medical education that always places patients in the center of the medical model. It is more important to understand the emotional, psychosocial, and value-driven aspects of a patient than to simply characterize the type of disease they have. Dr. Peabody sums it up best: “the secret of care of the patient is caring for the patient” (Peabody, 1927).

About the Author

Mayme Marshall is a recent graduate from the Honors College at the University of Washington with a Bachelors of Science in Molecular, Cellular, Developmental Biology and a minor in Bioethics and Humanities.

Dr. Ingra Schellenberg is the faculty sponsor for this submission. She is an Assistant Professor in the department of Philosophy and Bioethics and Humanities. Her primary appointment is in the Program on Values in Society.

References

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Oregon Health & Science University School of Medicine. Resources for Current Students. 2009. <http://www.ohsu.edu/ohsuedu/academic/ som/current-students.cfm> Peabody, Francis. The Care of the Patient. 1927.

Peek, C. J. Integrating Care for Persons, Not Only Diseases. J Clin Psychol Med Settings. 2009. 6:1-8.

Rakel. Textbook of Family Medicine. 7th ed. Saunder, Imprint of Elsevier, 2007.

The Summit on Integrative Medicine and the Health of the Public. Summit Provides Models for Health Care Reform. 2009. <http://www. bravewell.com/transforming_healthcare/national_summit/> Summit on Integrative Medicine and the Health of the Public. Webcast.

Feb 25-27, 2009. http://www.imsummitwebcast.org/ University of North Carolina School of Medicine. 1st Year Curriculum, Online Course Descriptions. 2009. <http://www.med.unc.edu/md/ firstyear/course-descriptions/clinical-application-course> University of Washington Medicine: Education. First Year Basic Science Curriculum. 2009.<http://uwmedicine.washington.edu/Education/ MDProgram/Curriculum/First+Year+Basic+Science+Curriculum. htm> U.S. News & World Report. Best Medical Schools: Primary Care Rankings. 2009. <http://grad-schools.usnews.rankingsandreviews.com/ best-graduate-schools/top-medical-schools/primary-care-rankings>

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Bensing, Jozien M. Shifts in doctor-patient communication between 1986 and 2002: A study videotaped General Practice consultations with hypertension patients. BMC Family Practice. 2006. 1-7.

Boehmke, Marcia M. The Diagnosis of Breast Cancer: Transition From Health to Illness. Oncology Nursing Forum. 2006. Vol 33, NO 6, 1-8.

Bonds, Denise E. The association of patient trust and self-care among patients with diabetes mellitus. BioMed Central. 2004; 1-7.

Bovinci, Kathleen A. Impact of communication training on physician expression of empathy in patient encounters. ScienceDirect: Patient Education and Counseling. 2008.

Buckman, Robert. Words That Make a Difference: Enhancing the “How” in “How We Say It.” Princess Margaret Hospital. 2006. Vol 3, No 2.

Christenfeld N, Gerin W. Social support and cardiovascular reactivity.

Biomed Pharmacother 2000; 54:251-7 Colliver JA, et al. Assessment of empathy in a standardized-patient examination. Teach Learn Med 1998; 10:8-11.

Cooke, Molly. American Medical Education 100 Years after the Flexner Report. The New England Journal of Medicine. 2006.

Katz, Jay. Informed Consent- Must it Remain a Fairy Tale? Ethical Issues: In Modern Medicine. McGraw Hill. 2009. Seventh Edition. page 91: 87-96.

Levinson W, Gorawara-Bhat R, Lamb J. A study of patient clues and physician responses in primary care and surgical settings. J Am Med Assoc 2000; 284:1021-7.

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Article

The Ethics of Non-Therapeutic Neonatal Male Circumcision Christine E. Schultheiss‡

Circumcision of newborn males has been practiced for thousands of years. In the US, between 76 and 92% of newborn boys are circumcised. Those who support the practice claim that it carries various medical and non-medical benefits with no significant risks. However, those who are opposed to neonatal circumcision argue that the benefits of circumcision are nominal at best and the infringement on the autonomy of the infant is a significant harm. Though little attention is given to this subject, there have been some attempts in recent years to justify or condemn the practice from a bioethical standpoint. The most significant of the attempts to defend the practice comes from David Benatar and Michael Benatar in their 2003 “Between Prophylaxis and Child Abuse: The Ethics of Neonatal Male Circumcision.” This paper attempts to refute the authors’ claim that non-therapeutic neonatal male circumcision is an ethically defendable practice for the reasons they suggest.

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Introduction

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Circumcision is an ancient practice which, as commonly defined, refers to the removal of the foreskin of the penis of an infant boy1. Though this procedure is quite common in the Jewish and Islamic faiths and in the United States, it is not as common worldwide. Between seventy-six and ninety-two percent of infant boys are circumcised in the United States today and circumcision in the Middle East and Central Asia is nearly universal; however, less than twenty percent of men in Central and South America are circumcised. Rates are similarly low in most of Asia (World Health Organization, 2007). In much of Europe, including the United Kingdom, circumcision rates also fall below twenty percent (World Health Organization, 2007) and, in some nations, such as Spain, Finland and Denmark, fewer than five percent of boys are circumcised (Castellsagué et al., 2005; Denniston, 1996; Frisch, Friis, Kjaer & Melbye, 1995). Overall, the global rate of circumcision is approximately thirty percent (World Health Organization, 2007).

Nonetheless, despite its prevalence, circumcision is controversial because it is a surgery, usually non-therapeutic, performed on infants. Circumcision plays an important role in the cultures of some of its practitioners, and these cultural backgrounds often serve as the primary impetus for the practice; however, cultural tendencies in themselves are not sufficient grounds to ethically defend a practice. Many authors have written both in attack and defense of the practice of circumcision of infant boys. Here I will attempt to address several of the arguments these authors have proposed, including a brief explanation of the most significant defenses of the practice of circumcision and why these defenses ultimately fail to justify neonatal male circumcision as an ethical procedure.

Medical Defenses

There are many varied defenses for the practice of cir-

‡ Temple University, christine.schultheiss@temple.edu

cumcision. These generally fall into one of two categories: medical defenses and cultural defenses. The medical defenses of circumcision typically assert that circumcision can play a significant role in preventing or lowering the risk of certain diseases, including urinary tract infections, HIV, non-HIV sexually transmitted diseases, and penile cancer. There appears to be a significant correlation between circumcision state and the occurrence of urinary tract infection in boys under twelve months of age: the rates are typically considered to be 0.15% for circumcised infants and 1.5% for uncircumcised infants (Benatar & Benatar, 2003b). Some studies suggest that circumcision reduces a man’s chance of contracting HIV when having unprotected sex with an infected partner. This correlation also exists for certain non-HIV STDs, including GUD, herpes and gonorrhea (Benatar & Benatar, 2003b). There also appears to be a relationship between circumcision state and the risk of contracting penile cancer later in life, though various studies disagree dramatically about the magnitude of this association (Benatar & Benatar, 2003b). Despite these data, the studies often cited in attempts to medically defend circumcision are often retrospective in nature, use small sample sizes or indirect approaches to obtaining data, and usually rely on men self-reporting their circumcision statuses (which some studies have found to be an unreliable). Therefore, the reliability of the conclusions of many studies is often questionable.

Of course, there are medical risks associated with circumcision. Most, like minor bleeding and infection, can be treated easily and carry little risk of long-term problems (these complications are analogous to urinary tract infections, and, though statistics on the number of complications vary wildly, the incidence rate is likely similar to the rate of UTIs). More serious complications include denuded penile shaft, laceration or necrosis of the glans, urethral fistula, and death (Benatar and Benatar, 2003b). Again,

Non-Therapeutic Neonatal Male Circumcision statistics on these complications are disparate. For instance, some sources (Benatar and Benatar 2003b) put the rate of death resulting from circumcision at 1 in 500,000 (or approximately 4 deaths per year); others, including those referenced by Svoboda (2003), put the figure at 200 or more deaths per year. One presumes that the less serious complications (like necrosis of the glans and urethral fistula) occur more frequently as a result of circumcision than death. Unfortunately, statistics relevant to this information are limited and of questionable reliability.

The conclusion that Benatar and Benatar (2003b) eventually reach is that the potential medical harms and benefits approximately balance each other. Thus, if circumcision does carry a net medical harm or benefit, the margin is too small to detect. This conclusion is consistent with the findings of several medical bodies, including the American Academy of Pediatrics (1999). Benatar and Benatar go on to say that because of this ambiguity, the decision to circumcise or not should be made solely on the basis of personal and cultural preferences. In the interest of space, I will assume their conclusion and explore the circumcision debate from cultural arguments only. I hope to demonstrate that, absent appeals to medical arguments, the nonmedical arguments in favor of circumcision still fail to justify its practice.

Non-medical harms

Benatar and Benatar (2003b) state that,

Let us now, then, consider the non-medically based arguments that are employed to defend or at least to explain) circumcision.

One common argument in defense of circumcision states that circumcised men experience more sexual pleasure, usually due to the assertion that their female partners derive more pleasure from the act. This is attributed to various factors, the most common being that uncircumcised men take, on average, longer to reach orgasm after beginning coitus, probably due to the fact that the foreskin’s absence allows desensitization of the glans. Studies on this issue, however, are inconclusive, contradictory and often testimonial in nature, and their reliability is therefore questionable.

Another widely heard reason that parents circumcise is for aesthetic purposes. This argument typically goes one of two ways: either “my son should look like his father” or “circumcised penises are more attractive than uncircumcised penises”. Both of these arguments are quite strange and fail when certain comparisons are made. For instance, most people would agree that surgery to cosmetically improve the bone structure, nose shape, or, indeed, female labial appearance of an infant would be grossly unethical.

There does not appear to be any way to justify cosmetic penile surgery if one rejects the ethicality of other types of

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They are correct here: a surgical procedure should not be performed and is not justifiable merely because it has not been proven to be harmful to the subject. They are also correct in their suggestion that not all benefits are medical benefits. For instance, they might suggest, cosmetic breast enhancement might not carry any medical benefit to the subject, but the mental and emotional benefit the procedure confers on the subject may justify it anyway. The authors seem, however, to ignore the converse possibility that not all harms are medical harms. The harm which they do not do justice is the one of the infringement upon the autonomy of the child. Benatar and Benatar would likely argue that they do address this issue, citing the fact that the parents of the child are, legally and likely morally, the child’s appropriate medical proxies until the child reaches a state of competency. However, Benatar and Benatar themselves, as well as other authors including Caroline McGee Jones (2003) and Sarah Waldeck (2003), establish that, not only is the decision to circumcise or not circumcise almost always made on cultural instead of medical grounds. They also state that it is probably irrational and unjustifiable to make the decision based on medical grounds because no

Non-medical defenses

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“…it might be said that it is not the mere absence of harm that renders surgery permissible but also the presence of clear and significant net benefit. In other words, it might be argued, it is not sufficient to show that a surgical intervention will not be harmful. There must, in addition, be a demonstrable benefit.

However, if we are correct that no clear and significant medical benefits derive from circumcision, there might still be other kinds of benefits.”

net medical benefits or harms have been successfully established. Therefore, though the parents are indeed the child’s medical decision-makers until the age of competency, the parents no longer have the authority to make this decision on the child’s behalf on medical grounds when the issue ceases to become a medical issue. One might argue that the parents still fill the role of the child’s cultural proxy, but this is much less clear. For some purposes, it is probably necessary for the parents to make certain cultural decisions for a child such as whether he will go to school or whether he will wear a certain type of clothing. Some cultural decisions, however, are typically accepted as not within a parent’s right to make for his or her child like forcing the child into an arranged marriage. I propose that circumcision is a cultural decision that the parent does not have the right to impose on a child. The most important defense of this claim is that circumcision is permanent. Therefore, circumcision constitutes a permanent, irrevocable infringement upon a child’s autonomy by his parents. When the child reaches adult age, he is not able to then exercise his autonomous right to have a foreskin: this right has been permanently removed by his parents. Some might attempt to counter this argument with the claim that this is acceptable because the medical benefits derived from circumcision are only realized if the procedure is done in very early childhood. This counterargument, however, does not carry significant weight because we have already determined that the argument for circumcision should not entail medical claims due to the inconclusive nature of the evidence in support of the supposed medical benefits.

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cosmetic surgeries for infants.

Another reason that some parents choose to circumcise their sons is that, quite simply, it is the normal thing to do in certain societies. The primary social consideration for circumcision that Sarah Waldeck (2003) suggests is the social norm imperative: parents circumcise their sons frequently because that is “what good parents do” and that is what the norm is. This is a somewhat vaguer version of the “locker room” argument, which proposes that many parents circumcise their sons because most boys are circumcised and their son will suffer awkwardness, confusion or humiliation in social settings that might involve him seeing other boys’ penises or them seeing his. This argument is a weak one, at least from an ethical as opposed to a social perspective.

There is nothing unnatural about foreskin that should make the child feel uncomfortable emotions, and appealing to current social norms or practices while attempting to ethically justify a practice merely avoids the question.

The justification for circumcision that is most important to take seriously is that of culture and religion. Since circumcision is an important part of many parents’ cultures and religions. In some of these cultures, circumcision is necessary for a boy to be accepted into his community. While these cultural and religious communities are important in the lives of many children, the fact that a certain culture or religion encourages or requires circumcision of infant boys does not automatically mean that such procedures are ethical. Again, as Benatar and Benatar (2003b) say, “cultural practices do not have trumping moral weight.” Caroline McGee Jones (2003) attempts to address this factor in her defense of circumcision: “Children grow and develop in an environment shaped by the values and experiences of their parents, teachers, friends, and so on. Thus, well-being is the cumulative effect of social, economic, and cultural factors.

Studies have shown that parental beliefs about circumcision are influenced by ethnicity, religious affiliation, and socioeconomic status (Laumann, Masi, and Zuckerman 1997).”

This is fairly non-controversial so far; however, when McGee Jones makes the jump from these observations to assertions about circumcision, her argument becomes disjointed.

She says, “given that these [aforementioned] factors play a significant role in a child’s well-being, parents are morally justified in deciding to circumcise an infant based on cultural or religious beliefs.” To attempt to summarize, Jones begins by stating, truthfully, a general observation about the environment in which children grow up. She goes on to state a well-accepted fact about the various environmental factors that can influence a parent’s choice to circumcise, including ethnicity, religion and socioeconomic status. She reiterates that these factors indeed play a role in the well-being of a child. She then makes the strange jump to the statement that therefore, circumcision is justified. In essence, she is arguing that circumcision is justified because the same factors that affect a parent’s decision to circumcise also affect, separately, the child’s overall well-being. This argument is not continuous. The fact that a parent might circumcise based on certain environmental factors in no way demon-

strates that circumcision is ethically justified. Until a clearer argument is presented, the claim that circumcision is justifiable for purely cultural reasons does not seem to hold water.

Male and Female Circumcision

The comparison of male circumcision to female circumcision is important in order to keep arguers consistent and to avoid social contradictions and hypocrisies based on gender.

Female circumcision, also known as female genital mutilation and female genital cutting, is a much more ambiguous term than its male counterpart. Whereas male circumcision tends to refer strictly to the removal of the foreskin, female circumcision can describe a large variety of procedures which could include a simple nick of the clitoral prepuce, complete removal of the clitoris, removal of the labia minora and/or majora, the sewing shut of the labia majora narrowing the vaginal orifice or any combination of the previous (World Health Organization, 2008). Unlike male circumcision, female circumcision in any of its forms is considered by most of the Western world to be a definitively unethical practice, despite the fact that the practice holds significant cultural value to those who practice it. Even in their 2008 published condemnation of the practice, the World Health Organization concedes that, “in cultures where it is widely practised, female genital mutilation has become an important part of the cultural identity of girls and women and may also impart a sense of pride, a coming of age and a feeling of community membership.” Very similar arguments are used to defend male circumcision from a cultural perspective.

Frances Batzer and Joshua Hurwitz (2003) take the position that male circumcision is morally preferable to female circumcision “as currently performed.” Benatar and Benatar (2003a) point out in their rebuttal that the form of female circumcision which is medically equivalent to male circumcision, the removal of all or part of the female clitoral prepuce, does not have the effect of inhibiting or curbing female sexuality, as Batzer and Hurwitz imply. While neither author directly cites any studies on this matter, Benatar and Benatar at least say that their claim comes from discussions from multiple gynecologists and pediatric urologists who specialize in this field. Batzer and Hurwitz merely make an uncited assertion. They go on to describe the process of ritual circumcision in adopted Jewish children, which involves drawing a drop of blood, and state that if a similar approach to female circumcision were taken, this procedure would be acceptable. Why Batzer and Hurwitz consider only a minimalist procedure, comparable to the ritual drawing of blood from the penis, to be permissible when it comes to female circumcision is unclear. The authors acknowledge that the complete amputation of the foreskin is more extreme than this ritual drawing of blood, so their ethical rejection of a similarly more invasive surgery in female infants is inconsistent.

It is interesting to note that the kind of minimalist female circumcision the authors suggest has already been suggested in the medical community. This small nick of the female prepuce was suggested as an alternative to full female

Non-Therapeutic Neonatal Male Circumcision circumcision by Seattle doctors in 1966, and this alternative was considered acceptable by “at least some” of the Somalian parents (Benatar and Benatar, 2003b). The reason doctors were not permitted to carry out this procedure was the federal law in place forbidding any nonmedical surgery on the genitals of a female minor (Davis, 2003). Davis (2003) also addresses arguments made by many, including Batzer and Hurwitz (2003), that male and female circumcision are on incomparable moral levels because the primary goal of female circumcision is to curb or eliminate female sexuality. She points out that this viewpoint does not take into consideration other “parental motivations, which often include concern about the ability of surgically unaltered girls to marry within the community” (Davis, 2003). This concern about the ability of the girl to be accepted in her community is quite similar to some of the previously discussed motivations that parents have to circumcise their male children.

The logical conclusion from these various comparisons of male and female circumcision is that, when practiced to equivalent extremes, there is no clear reason why male and female circumcisions are not morally equivalent. Therefore, as Benatar and Benatar (2003b) put it, “we suspect that the opposition to excising the clitoral prepuce is based not so much on the absence of medical evidence for a benefit, as on an abhorrence for removing genital tissue from a girl.

This suggests an asymmetrical judgment about the intrinsic acceptability of removing preputial tissue.“ As Benatar and Benatar suggest, this asymmetry can be addressed in one of two ways: either male circumcision must be considered unethical, or female circumcision practiced to a similar extent must be considered ethical.

Conclusion

1

For the purposes of this paper, the term “circumcision” should be understood to refer to non-therapeutic neonatal male circumcision, unless otherwise noted.

About the Author Christine E. Schultheiss is a senior at Temple University majoring in Cellular and Molecular Neuroscience.

The faculty sponsor for this submission is Dr. Miriam Solomon. She is Professor of Philosophy at Temple University.

References Frisch, M., Friis, S., Kjaer, S. K., & Melbye, M. (1995). Falling incidence of penis cancer in an uncircumcised population (Denmark 1943-90).

BMJ, 311:1471. Retrieved from http://www.bmj.com/cgi/content/ full/311/7018/1471 McGee Jones, C. (2003). Neonatal Male Circumcision: Ethical Issues and Physician Responsibility. The American Journal of Bioethics, 3(2), 59-60.

Svoboda, J. S. (2003). Circumcision—A Victorian Relic Lacking Ethical, Medical, or Legal Justification. The American Journal of Bioethics, 3(2), 52-54.

Waldeck, S. E. (2003). Social Norm Theory and Male Circumcision: Why Parents Circumcise. The American Journal of Bioethics, 3(2), 56-57.

World Health Organization (2007). The Global Prevalence of Male Circumcision. Retrieved from http://www.who.int/hiv/pub/malecircumcision/infopack_en_2.pdf World Health Organization. (2008). Eliminating female genital mutilation. Retrieved from http://whqlibdoc.who.int/publications/2008/9789241596442_eng.pdf

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American Academy of Pediatrics (1999). Circumcision Policy Statement.

Pediatrics, 103(3), 686-693.

Batzer, F. R. & Hurwitz, J. M. (2003). Male Neonatal Circumcision: Ritual or Public-Health Imperative. The American Journal of Bioethics, 3(2), 26-27.

Benatar, D. & Benatar, M. (2003a). 3:2 Target Article authors respond to Commentators: How Not to Argue About Circumcision. The American Journal of Bioethics, 3(2), 1-9.

Benatar, D. & Benatar, M. (2003b). Between Prophylaxis and Child Abuse: The Ethics of Neonatal Male Circumcision. The American Journal of Bioethics, 3(2), 35-48.

Castellsagué, X., Peeling, R. W., Franceschi, S., de Sanjosé, S., Smith, J. S., Albero, G. et al. (2005). Chlamydia trachomatis Infection in Female Partners of Circumcised and Uncircumcised Adult Men. American Journal of Epidemiology, 162(9), 907-916.

Davis, D. S. (2003). Cultural Biases in Responses to Male and Female Genital Surgeries. The American Journal of Bioethics, 3(2), 1.

Denniston, G. C. (1996). Circumcision and the Code of Ethics. Humane Health Care International, 12(2). Retrieved from http://www. humanehealthcare.com/Article.asp?art_id=620

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To summarize, I have attempted to offer a fair description and analysis of each of the major attempts to defend the practice of neonatal male circumcision, and have offered a discussion of why each of these attempts fails to offer suf-

ficient defense of the practice from an ethical standpoint.

I have also engaged in a brief discussion about the inconsistency that exists in many cultures which engage in male circumcision regarding the equivalent practice of female circumcision. Just as it has been established that male circumcision, taken to mean the complete removal of the foreskin, is ethically indefensible, the equivalent version of female circumcision is also ethically indefensible. Obviously, any more extreme form of male or female circumcision or genital alteration for non-therapeutic purposes in infants is at least, if not more, indefensible from an ethical standpoint. It seems that much of the inconsistency that exists between the views of male and female circumcision in the public consciousness stems from a lack of attention to the issue of male circumcision and a lack of comparison between this procedure and female circumcision in the public mind. Because male circumcision is such a common practice that affects a large percentage of children born in America, it is vital that this practice be given due ethical consideration by the public. It should not be complacently condoned and accepted merely because of cultural norms.

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Article

Xenotransplantation: Weighing the Risks and Benefits of a Controversial Procedure

Arun Sharma‡

Penn Bioethics Journal

Volume VI Issue ii

The widespread organ shortage is a medical dilemma that has been well documented for a number of years. Because of this problem, massive waiting lists have unfortunately become a reality, and as a result, thousands of patients die while waiting for their replacement organs. However, a unique, albeit risky, alternative to traditional transplantation procedures, known as xenotransplantation, has been proposed. Xenotransplantation is a controversial procedure involving the short-term transplantation of animal tissues into humans. Proponents of this alternative to traditional transplantation support it because xenotransplantation can serve as a temporary “bridge” for patients waiting for a long-term human replacement organ. The prospect of saving thousands of human lives cannot be underestimated. Xenotransplantation could potentially eliminate the organ shortage crisis by providing temporary organs until human replacement tissues can be procured. Understandably, however, this unique procedure raises multiple medical and ethical concerns.

Traditional transplantation has been associated with terrible medical problems such as acute organ rejection, and because of xenotransplantation’s cross-species nature, these problems are only magnified through concerns such as interspecies virus transmission. From an ethical standpoint, one must also consider to what extent animal organs can be “harvested” without ultimately establishing organ farms where animals are grown only to be slaughtered for medical purposes. Taking all medical and ethical risks into consideration, xenotransplantation should still be given serious thought because of its potential to alleviate the organ shortage crisis and ultimately to improve the human condition.

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Imagine this situation: you are a hospital patient with two failing kidneys, and without a transplant, you are estimated to live only for a few more weeks. Unfortunately, the doctors will not be able to procure a human kidney for you in such a short period of time because of the incredibly high demand for these organs. However, you are presented with another, more unique option. As part of an experimental procedure, you are offered a xenotransplant organ: a kidney from an animal. In your case, the organ will come from a genetically modified swine. The xenotransplanted organ would merely serve as a “placeholder” organ until a human version becomes available. If you knew the benefits and risks of this novel medical procedure, would you take up the offer?

Such occurrences may become more commonplace with advances in the medical science of xenotransplantation, defined as “the transplantation into humans of organs from another species” (Cozzi and White, 1995). However, the science is not merely hypothetical, as xenotransplantations have been occurring with varying levels of success on large and small scales for more than twenty years. For example, pig heart valves, which are comprised of nonliving tissue, have been successfully transplanted into humans for decades (Clark, 1999). Baboon bone marrow, known to produce immune system cells resistant to HIV, has been experimentally transplanted into patients with AIDS, such ‡ Duke University, Arun.sharma@duke.edu

as AIDS activist Jeff Getty, in the hopes of improving immune system functionality for those afflicted with the disease (Lehrman, 1995). In 1992, physicians at Duke University used multiple pig livers as external, living dialysis machines for a patient with irreversible liver failure (Reilly, 2000). Additionally, given the shortage of human organs available for transplantation purposes, xenotransplantation could provide a method for quickly and cost-effectively supplying organs to individuals who need them. Harold Vanderpool, a proponent of the widespread use of xenotransplantation, believes that calling the number of organs available for transplantation insufficient is an understatement, noting that organ lists are expanding rapidly every year and sometimes by as much as seventy percent over a five year span (Vanderpool, 1999). However, the procedure is certainly not without its own risks. As medical ethicist Margaret Clark argues, by far the biggest procedural problem for transplantations in general is organ rejection by the recipient’s immune system, and the cross-species nature of xenotransplantation only augments the danger (Clark, 1999).

Is xenotransplantation worth the risk? Before we can answer this question and assess the feasibility of this unique medical procedure, xenotransplantation’s benefits, such as Vanderpool’s suggestion of offering relief for the severe problem of organ shortage, must be weighed against its

Xenotransplantation 2010

2006

Australia’s National Health and Medical Research Council retracts a five-year ban on xenotransplantation.

Transgenic mice developed which contain a human blood clotting gene, CD39. When cultured in human blood, these transgenic mouse tissues do not display an acute immune response to the blood.

1975

1992

Porcine heart valves, tissues still being utilized in transplantation today, are introduced to the medical market.

1970

Surgeons at Duke University utilize multiple pig livers as external dialysis machines for a patient with liver failure.

1980

“Baby Fae”, an infant with a malformed heart, receives a baboon heart as a replacement organ.

1984

1999

An FDA investigation shows no presence of the porcine endogenous retrovirus genome in recipients of pig tissue xenografts.

1990

2006

Jeff Getty dies at the age of 46 from heart failure due to AIDS complications.

2000

2010 After government approval, New Zealand joins the United States in the use of transplanted piglet pancreatic islet cells to treat patients with type1 diabetes.

AIDS activist Jeff Getty receives a baboon bone marrow transplant in hopes of boosting his deficient immune system with the baboon’s natural AIDS resistance.

1995

Transgenic pigs developed that lack a cell-surface marker important in initiating hyperactive immune responses leading to organ rejection in xenotransplantation.

2002

2008

Overseen by the World Health Organization, the Changsha Communiqué begins. It is the first international colloquium for discussing the regulation of xenotransplantation.

2008

Alleviating the Organ Crisis

Risks for Intra and Interspecies Transplantations

Transplantation is a medical technique that is associated with some of the most horrific medical problems, any of which could lead to sudden death. The most prominent among these involves rejection of a donor organ by a recipient’s immune system. To avoid rejection, donor organs are excruciatingly screened for compatibility with the new host’s immune system (Clark, 1999). Violent immune re-

Volume VI Issue ii

By far the most promising benefit associated with xenotransplantation is its potential to drastically increase the number of organs available for transplantation. The shortage of organs for transplantation purposes represents nothing short of a crisis. According to the general consensus of medical professionals at a transplantation workshop for the Institute of Medicine at the National Academy of Sciences, “there would never be enough organs to satisfy the demand” for transplants (Cooper, 1996). The statistics to back up these conclusions are equally grim. For example, estimates show that although 45,000 Americans under the age of 65 could benefit from a heart transplant, only 2,000 actually end up receiving one (Clark, 1999). As a consequence of this severe organ shortage, illicit trafficking of

human organs has turned into a lucrative black market business in developing countries such as India and Brazil (Clark, 1999). Xenotransplantation can serve as an indirect solution to this heinous industry. The reality of this organ shortage is the basis for Harold Vanderpool’s argument in favor of xenotransplantation, which is a direct rebuttal to Margaret Clark’s paper on the creation of a “moratorium” for xenotransplantation. Vanderpool argues that the benefits of xenotransplantation, most notably increasing the number of organs available for transplantation purposes, are enough to outweigh the risks. Even so, the risks involved with xenotransplantation and transplantation in general are serious enough to warrant an immediate inspection before one can delve further into the future potential for the procedure.

Penn Bioethics Journal

risks, such as Clark’s argument concerning the increased likelihood of organ rejection by the patient and the interspecies transmission of potentially lethal diseases. However, because Clark’s argument is almost a decade old, she neglects to mention some of the new advances in xenotransplantation from the first decade of the 21st century.

One must note the breakthroughs in medical genetics that will hopefully allow xenotransplantation to become a reality.

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Article sponses have been known to occur in individuals where an incompatible organ has been placed in a host, with death being known to occur in a matter of hours. This deadly risk is the basis for Margaret Clark’s argument against xenotransplantation. She believes that “transplants from animals to humans have all the risks of [human transplantation], and then some” (Clark, 1999). One of these additional risks is hyper-acute rejection (HAR), where the new host’s immune system quickly identifies the animal organ as a foreign entity and rapidly rejects it. Experimental studies in xenotransplanting organs from pigs to dogs show that the inter-species transplantation procedure can result in an HAR response from the host’s own immune system that manifests in a matter of seconds and can kill the host in minutes (Reilly, 2000). This is why Clark believes that xenotransplantation should be placed on hiatus, at least until we can unlock the secrets of the immune system that tell us why such a strong immune reaction is present for xenotransplanted organs, and ultimately, find a way around this immune response. However, could Clark’s moratorium be avoided if we find a way to modify the donor organs so that the new host recognizes the new organs as its own? Scientists believe that modern advances in genetic engineering hold the answer.

Penn Bioethics Journal

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Current Advances in Xenotransplantation

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Indeed, new discoveries have been made in the field of xenotransplantation since Clark’s argument was published in 1999. For example, the solution for xenotransplantation organ rejection may lay in the development of genetically modified or “transgenic” animals, preferably swine. These transgenic pigs are engineered in a way that “knocks out” a gene which produces a cell surface marker that human immune cells recognize and attack (Lai et al, 2002). This novel technique modifies pig organs so that immune cells are not able to identify them as foreign. In another study from 2006, scientists discovered a potential solution for the problem of severe blood clotting that occurs when animal tissue is exposed to human blood (Dwyer et al, 2006). Although clinical trials that utilize these advances may not occur in humans for quite some time, initial tests in animals have proven promising. Physician scientist David White and his colleagues in England managed to transplant a pig heart into a monkey and keep the animal alive for around 60 days, well after the time range for HAR (Schmoeckel et al, 1998). Even though this still seems like a very short amount of time to extend an individual’s life by, one should be reminded that xenotransplantation is currently being hailed as a way to extend the life of a patient while a suitable replacement human organ is found.

In terms of actual human xenotransplantations, more recent developments have focused on tissue replacements and cell grafting rather than whole organ transplantation.

Human trials are being promoted in part because of improved communications between health groups and scientists concerning the potential of xenotransplantation. An example of this was the 2008 Changsha Communiqué, the

first international colloquium held to discuss the ethical implications and potential of xenotransplantation (Changsha Communiqué, 2009). The Changsha Communiqué encouraged continued pursuit of xenotransplantation research and clinical application. Of particular current clinical interest is porcine pancreatic islet cell transplantation for the treatment of type-1 diabetes. Porcine islet cells can replace malfunctioning human pancreatic cells unable to produce sufficient amounts of insulin, a hallmark of type-1 diabetes (Hering, 2009). A number of countries have begun joining the United States in the use of pig islet cells, the most recent being Australia which lifted its ban on xenotransplantation in early 2010 (Perry, 2009). Pig islet cell transplantations, along with their potential to treat diabetes, will also reduce the demand for limited replacement human islet cells.

Regardless of whether xenotransplanted tissues provide permanent solutions for shortages, these genetic experiments should definitely be pursued further. Even if in terms of promoting xenotransplantation this genetic research turns out to be a failure, some good will come out of it because we will certainly learn more about how our immune systems function. As of now, animal organs are not being seen as alternatives to permanent human transplants and are still viewed as “bridges” while human replacements are found (Clark, 1999). Still, xenotransplantation is being met with scrutiny not only for the problems innately associated with transplantation, such as organ rejection, but also for risks that are associated with the cross-species aspect of this procedure, namely the possibility of transmitting xenoses, or inter-species diseases (Chapman, 1995).

Cross-Species Disease Transmission

Human society has already felt the effects of cross-species diseases, or xenoses, through the onset of the Ebola virus and the HIV/AIDS epidemic. What makes these diseases particularly deadly is their ability to completely surprise the human immune system because of their genetic obscurity.

This is another concern that Margaret Clark raises in her argument against xenotransplantation, and the various diseases that mankind have already acquired from animals give substantial evidence for her concern. For example, the Ebola virus, one of the deadliest pathogens known to mankind, is thought to have a natural reservoir in monkeys, which have developed a resistance to the virus (Chapman, 1995).

However, when humans are infected with Ebola, nightmarish scenarios have been known to play out. In the case of Ebola Zaire, the deadliest form of the virus, mortality rates have been observed at 90 percent (Chapman). These mortality rates are thought to be extremely high because the human immune system has never previously been exposed to these pathogens.

Conversely, one of the reasons that simian, or primatebased, xenotransplantation research has been rejected in favor of porcine, or swine-based, research is because of the genetic similarities that humans and other primates share.

Scientists fear that we would be more susceptible to the same viruses. This idea helps to explain how HIV, the killer

Xenotransplantation retrovirus responsible for millions of deaths worldwide in the 20th century, developed in humans. One theory is that the Human Immunodeficiency Virus mutated from the related Simian Immunodeficiency Virus by transmission of simian cells into a human, an occurrence analogous to xenotransplantation (Chapman, 1995). Additionally, in one study, baboons were found to “harbor at least six persistent retroviruses and herpes viruses that can replicate in human cells” (Clark, 1999). However, porcine xenotransplantation critics have also warned that the pig harbors a similar virus called the porcine endogenous retrovirus (PERV), which is of the virus class as HIV (Reilly, 2000). Critics argue that this virus, carried in the DNA of all swine, has the potential to create the next AIDS epidemic in humans if porcine xenotransplantation becomes commonplace. However, some of the concerns of Clark and other opponents about this virus were put to rest in 1999 with the actions of the FDA Xenotransplantation Subcommittee, which asked researchers to test every research subject who had received porcine tissue for the presence of PERV. One hundred monkeys that had received pig tissues or organs were tested for the virus as well. Not a single test subject, human or primate, showed any signs of PERV infection, and as a result, in the year 2000, the “green light” was given for experimental cell-level xenotransplantation procedures (Reilly, 2000).

These trials serve to reinforce the idea that the solution for preventing the spread of cross-species diseases would be to find an animal donor, such as the pig, that is more distantly related to humans than other primates are.

Finding the Right Donor

Animal Treatment and Morality

Finally but perhaps most importantly, raising our genetic cousins just for the purpose of organ harvesting is ethically and morally troublesome. For example, scientists such as Jane Goodall have dedicated their lives to study the similarities between human and simian social interactions. Is it acceptable to look to our primate brethren, with whom we can associate many “human” characteristics such as intense familial care and high intelligence, as mere organ farms? A common gut reaction to this question is a vehement no, but the possibility of using pigs as an alternative species could ease concerns. As ethicist Robin Weiss states: “The ethical issues about using pigs seem less than those about the use of primates. After all, pigs have been domesticated for thousands of years, they are routinely slaughtered for human consumption, and the medical use of pig heart valves has not raised serious objections from those religions that disapprove of the consumption of pork. Transgenic mice have become a common tool in medical research, and transgenic pigs are not different in principle or practice.”

Volume VI Issue ii

Another issue to consider in the push for porcine xenotransplantation involves the informed consent of patients participating in clinical trials. According to Vanderpool, the idea of “informed consent” involves patients’ understanding of “all the relevant information about the [xenotransplantation] protocol that reasonable persons would want to know in order to freely and affirmatively enroll in the research.” As such, informed consent in the context of xenotransplantation would call for patient understanding of the unique risks associated with the procedure, most prominent among them being the risk of post-procedural xeno-viral infection from an agent such as PERV. Vanderpool insists that only responsible patients and those willing to be closely monitored post-surgery for possible complications should be considered for any xenotransplantation procedure. However, this also raises the question of personal privacy following a successful transplantation procedure. How frequently and to what extent should a tissue recipient’s post-operation life be scrutinized by healthcare providers to ensure safety from possible xenoses? Along the same lines, should a tissue recipient be prohibited from engaging in “risky” behavior such as sexual activity that could spread xenoses, and consequently, be prohibited from leading a normal life? These are issues that must be addressed thoroughly before xenotransplantation can become commonplace.

These ideas reinforce Vanderpool’s call for the spread of xenotransplantation, preferably porcine xenotransplantation. As crude as it may sound, we should focus on procuring pig organs over simian ones in part because our

Penn Bioethics Journal

In looking for a suitable species for xenotransplantation purposes, human compatibility must be the number one criterion. One would assume that, because of physical similarities, some sort of primate would be the best choice.

In fact, a few xenotransplantations have been attempted using simian organs, usually those from baboons. The most famous of these cases was the controversial transplantation of a baboon heart into “Baby Fae”, a 15-day-old infant who was born in 1984 with an underdeveloped left ventricle.

The objective of the procedure was not to permanently install the simian heart in Fae, but rather like the hypothetical example presented at the beginning of this paper, provide a temporary bridge before a suitable human organ was found. Baby Fae was kept alive under heavy immunosuppresion for 20 days before the organ was rejected (Reilly, 2000). Despite attempts at simian transplantation, however, modern xenotransplantation science has developed a preference for research into porcine organs over simian ones.

While acknowledging the obvious similarities between human and monkey physiologies, scientists have presented a number of reasons as to why simian transplantation is not preferred. Firstly, primates take quite some time to mature and produce one offspring at a time, so from a chronological standpoint, raising monkeys for transplantation would be inefficient. Secondly, scientists fear that transplantation of simian organs into humans could introduce unknown

xenoses into the population, similar to the way that HIV is thought to have been introduced. The assumption is that “the greater phylogenetic distance between humans and swine (as compared with nonhuman primates) makes swine safer donors”, but this assumption has not been thoroughly explored because full organ pig-to-human xenotransplantations have not yet occurred (Chapman, 1995).

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Xenotransplantation emotional attachment to the pig species is far less than it is to other primates. These ethical concerns about procuring primate organs, combined with modern advances in genetic science, are pushing porcine xenotransplantation to the brink of reality.

Conclusions

We have finished assessing the benefits and problems associated with xenotransplantation. The greatest presented benefit is the potential to substantially increase the number of organs available for transplantation purposes particularly as “placeholders” until more suitable human organs can be procured. Additionally, genetic research into creating transgenic organs that do not trigger immune responses in recipients is essential for helping us understand more about how our immune systems function. The risks associated with the procedure should not be taken lightly, however.

The possibilities of hyper-acute immune rejection on an individual scale or the spread of a new pandemic from a porcine virus on a larger scale are enough to make us think twice about making this procedure more common. We now return to the original question: is xenotransplantation worth the risk? The answer is yes. The organ shortage crisis is far too dire not to take immediate action. When it comes to extending the lives of those who need organ transplants, all medical options should be considered, and the development of xenotransplantation presents patients with another option. However, this is not to say that xenotransplantation research and application should occur without extreme

caution. We must constantly monitor xenotransplant organ recipients for possibility of HAR or any other sort of immune rejection or infection. Also, we must be wary of the unpredictable nature of viruses such as the aforementioned porcine endogenous retrovirus, and again, patients must be constantly monitored for any signs of disease. As with any high-risk medical procedure, the number one priority should be to ensure that great care is taken for the well being of the patient. Full organ xenotransplantations, because of their temporary nature and relative lack of testing, should be used only as a last resort when no possibility of immediately transplanting a human organ is available because the immediate risks of immune rejection in the patient are still far too high. But, if the ultimate result is life extension in patients with little hope in waiting for a human organ transplant, then xenotransplantation should definitely be considered an acceptable alternative.

About the Author

Arun Sharma is a Biology major with a certificate in Genome Sciences and Policy at Duke University.

Dr. Robin Smith is the faculty advisor for this paper. She is currently the staff science writer and communications officer at the National Evolutionary Synthesis Center (NESCent). Prior to this appointment, she taught a writing seminar titled “Genetics and Society” at Duke University.

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