Volume V, Issue iFebruary 12, 2009

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Also Inside:The Ethics of Genetic Testing

Humanitarianism and Human Rights: Tensions in Médecins sans Frontières Laura Harris

Is it over the line for a neutral humanitarian organization to accuse states of human rights abuse?

Interview: Dr. Hank Greely Shirley Ahn, Megan Kauffman, Tuua Ruutiainen, Katie McCarthy

Obamaʼs Healthcare Problem Visesh Agrawal

Bioethics in Brief Leila Glass, Tim Pian, Nayan Ramirez, Tuua Ruutiainen

Bo PengEDITOR IN CHIEF

Anand BhagwatPUBLISHER

Claire ChangMarkley ForemanArmin Gollogly

Palak KunduIngrid LindquistKavita Vinekar

MANAGING EDITORS

Michael WeintraubBUSINESS MANAGER

Shirley AhnPalak Kundu

Vishesh AgrawalEmily Knudsen-Strong

Lauren TalmanKavita Vinekar

ASSOCIATE PUBLISHERS

Vishesh AgrawalShirley Ahn

Daniel AlbornozAnand Bhagwat

Diana ChangLeila Glass

Tucker JohnsMegan Kauffman

Emily Knudsen-StrongLulu Liu

Katie McCarthyNadia MikhailRajini Murthy

Ali NillEva NobleVineet Patil

Tim PianNayan Ramirez

Sasha Riser-KositskyElizabeth RubinTuua RuutiainenLauren TalmanLee Vandivier

Michael WeintraubKristine Wong

ASSOCIATE EDITORS

Jonathan Moreno, Ph.D.Connie Ulrich, Ph.D., RN

FACULTY ADVISOR

Questions or Comments?Please direct all inquiries to the Editor in Chief at editors@bioethicsjournal.com

Contents

Ethical Issues in the Advent of Genetic Testing Benjamin Schanker20Despite the obvious benefits genetic testing can offer patients, there are important ethical issues to consider.

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1 Letter from the editor Bo Peng

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29 End of Life Issues in Judaism and a Comparison to the American System Jennifer ChevinskyExamines the Judaic perspective on end of life care, which has a basis in preservation of human life with sensitivity toward suffering.

Interview: Dr. Albert Yan Emily Knudsen-Strong, Ingrid Lindquist, Elizabeth Rubin

Civil Rights of the Mind Katie McCarthy

To Feed or Not to Feed? Daniel Albornoz

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Letter from the Editor

Bo Peng introduces you to Volume V Issue i of PBJ

You have in your hands the seventh publication (Volume V, issue i) of the Penn Bioethics Journal. If you are new to the journal, welcome! For old readers, we hope you continue to enjoy our publication and find the new additions to your liking.

The New Year has hit the ground running, and although we are only a month into 2009, the election and inauguration of President Barack Obama already promises to reshape the U.S. social, political and economic landscape. In honor of the momentous occasion, the journal staff held its board elections on the same day as the presidential inauguration. I’m happy to announce the selection of Michael Weintraub CW’11 as the new editor in chief of the Penn Bioeth-ics Journal. His youth and enthusiasm will certainly take the journal to another level of success.

As an academic journal constantly looking for ways to improve its content, appeal, and reach, we’ve incorporated new ideas this issue. Based on the success of our previous implementation of staff-written news briefs and articles, we’ve continued the effort this issue. In this issue you will find several news briefs and 3 articles written by our very own staff. We also proudly present two interviews this issue, first with Dr. Albert Yan, Chief of Pediatric Dermatology at the Children’s Hospital of Philadelphia and Associate Professor of Pediatrics and Dermatology at the University of Pennsylvania School of Medicine, who shares his experiences creating a bioethics journal as a Penn medical student. Our second interview is with Dr. Henry “Hank” Greely, director of the Center for Law and the Biosciences and the co-director for Program in Genomics, Ethics, and Society at Stanford University, who discusses his progression into bioethics and comments on several new and current technologies.

This is my final issue as editor in chief and I’m very proud of the accomplish-ments we’ve made over the years. We are leagues from where we started with many more mountains on the horizon. A few thanks are in order. I’d like to begin by congratulating and thanking all the submitters for their support of our journal. We could not do it without the ever-increasing number of submissions we receive for each issue. Big thanks to all of the editors and publishers of the PBJ board for making this issue possible. Your continued dedication and hard work are the pillars of our success. I’m also very grateful to our growing rank of financial supporters, whose advertisements for excellent opportunities are placed throughout the issue. I hope our relationship can continue in future issues. Fi-nally, I send my congratulations to our graduating seniors. Good luck in all your future endeavors, wherever they take you. Don’t forget to Dream Big.

- Bo PengEditor in Chief

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Bioethics in Brief

Handheld Device Capable of Fifteen Minute DiagnosisAt the University of Leeds, a team of researchers have developed a handheld device that uses biosensor technology, named ELISHA,

to detect several human diseases. ELISHA, or Electro-Immunointerface and Surface Nanobiotechnology, uses antibodies to detect the presence of certain molecules serving as markers for certain diseases such as cancer or multiple sclerosis. Developers of the technol-ogy predict that it could easily be expanded to detect HIV, tuberculosis, and other diseases. With an approximate wait-time of fifteen minutes for a diagnosis, they predict that the device could eventually resemble a cell phone in size. The device is forecasted to become commercially available to physicians in approximately three years, but the future availability for home use remains unclear. Although at-home-monitoring for diseases like HIV has been suggested as one possible use, some are hesitant at the idea of self-diagnosis. The new technology would replace more expensive, existing methods which take multiple hours to complete and require highly skilled staff. - Nayan Ramirez

Testing gender in the olympics Some female athletes at this summer’s Beijing Olympics

were asked to undergo tests to confirm their gender. The “sus-pect” women were judged by a variety of specialists including a gynecologist, an endocrinologist, a psychologist, and a geneticist. Gender determination tests are not new to the Olympics. Dur-ing the 1960’s, when it was suspected that communist countries were entering males in female events, every female athlete was required to walk nude in front of a panel of doctors. The tests are controversial because they have never uncovered a male posing as a female, but have only uncovered females with genetic defects. Only two years ago, Santhi Soundarajan, an Indian long distance runner, lost her silver medal because a urine test indicated that her gender was questionable. Although these tests have evolved, critics feel that gender tests, in any capacity, are unethical because gender cannot be easily defined. - Tuua Ruutiainen

Breast cancer gene testsA new genetic test may allow women to assess their risk for

breast cancer. Decode Genetics, a biotech research company based in Iceland, recently announced that it would market such a test directly to consumers. These tests are enticing considering that a large number of women are killed each year by the disease. Although testing is very expensive, women are eager to find a reli-able assessment of their risks that will alleviate their fears about developing cancer. Unfortunately, the tests may not be as accurate as consumers would hope. According to Art Caplan, director of the Center of Bioethics at the University of Pennsylvania, there is not enough information to determine how genetics and lifestyle interact to cause risk factors for the disease. He argues that genetic testing is useful primarily for the subset of women with a family history of breast cancer. - Tuua Ruutiainen

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GMOs and AgrobiotechnologyLast month, Kenya became the second nation in Africa to initiate a governmentally co-sponsored campaign aimed at educating the

public on issues of biotechnology, “enabl[ing] Kenyans to make informed decisions and be involved in determining the pace of adop-tion of biotechnology in the country.” Critics pan this BioAWARE-Kenya campaign as an official sanction and push for biotechnology, rather than an education initiative.

The debate in Kenya reflects an ongoing global interest in GMOs. In August, the Scottish government joined in supporting Prince Charles’ denounciation of the prevalence of GMOs in agrobiotechnology, calling future widespread use of genetically modified crops “the biggest disaster environmentally of all time.”

The Center of Food Safety and Applied Nutrition (CFSAN), a division of the Food & Drug Administration, declared in April 2008 that the levels of the protein Cry9C were low enough in corn shipments that further sampling and testing for Cry9C residues was no longer necessary. Cry9C, a protein that confers pesticidal resistance in certain genetically modified strains of corn, was accidentally introduced in 2001 to corn designated for human consumption after being restricted to corn for animal use. The FDA subsequently mandated screening for the protein up until the recent decision to lift screening. Concerns about agrobiotechnology center around the use, spread, and long-term effects of genetically modified organisms. - Tim Pian

News Briefs

Medicaid no longer covers Medicare ErrorAs of Wednesday, October 1st, Medicare is no longer paying hospitals for patient complications that are due to “reasonably prevented

error”. Medicare officials have listed 28 different situations for which Medicare will no longer provide coverage. These scenarios include everything from the medical error of a sponge being left in a patient after surgery to bedsores or infections acquired during a hospital stay. This development has already influenced other private and public insurance companies decisions to employ similar lower coverage.

Health economists have speculated that this withdrawal of coverage for medical error could lead to a higher quality of preventative care and hopefully fewer mistakes. Some hospitals have already begun the transition to preventative care by placing “time-out” towels over surgical equipment to give surgeons time to re-assess the procedure needed. Prescription scripts are being typed instead of hand written and catheters are being monitored more closely to prevent UTIs. Medicare will encourage more effective and efficient medical procedures by rewarding doctors and hospitals that report outstanding quality measures. Some are concerned that the loss of coverage transfers the cost of physician and hospital error to innocent patients. - Leila Glass

Controversial Plastic Compound Found to be Associated with Hearth Disease and Liver Issues Exposure to plastic baby bottles, food containers, and water bottles was found to correlate with the development of heart disease, liver

problems, and type II diabetes in a study published in the Journal of the American Medical Association ( JAMA) by Iain Lang this September. The multi-regional study had a sample size of almost 1,500 people and noted a significant association between exposure to the plastic and the development of the aforementioned diseases. Critics of the JAMA study emphasize the idea that correlation is not necessarily causation, stressing that the study proves an association but no clear cause and effect. Furthermore, Federal regulators have stated that BPA (Bisphenol A, the compound found in plastic) is safe. These conflicting opinions are a testament to the controversy over the safety of BPA. There is no conclusive scientific data to evaluate the impact of BPA on health; however, the results of the new JAMA study might serve as support for the multitude of lawsuits that have been filed against companies such as Nalgene and Wal-Mart. Major vendors have begun to switch product lines, haulting the manufacturing of products with BPA even without concrete scientific evidence. The controversy continues, and many have chosen to play it safe and avoid BPA entirely. - Leila Glass

HPV Vaccine Requirement for Female ImmigrantsU.S. Citizenship and Immigration Services recently added

Merck & Co.’s Gardasil vaccine to their list of vaccinations required to become a legal resident. The requirement applies to all female immigrants, ages 11 to 26, seeking green cards. The vac-cine protects against some types of human papillomavirus, which have been linked with cervical cancer among other diseases. Yet immigrant advocates argue that the cost of the vaccine, at approx-imately $400, burdens applicants already paying over $1000 in other fees and that the vaccine is not currently a requirement for existing female U.S. citizens. Although a waiver may be sought on religious or moral grounds, it would require immigrants to oppose all types of vaccination. As of June 2008, the FDA had reported 9,479 cases of adverse events and 20 deaths following Gardasil vaccinations. When questioned, both the CDC Committee on Immunization Practices and Merck stated they were not in-formed that their recommendations had led to mandating of the vaccine. - Nayan Ramirez

Placebo Pill for children A new placebo pill is being marketed for children in the hopes

of providing relief to minor illnesses. Jennifer Buettner, founder of Efficacy Brands, came up with the idea for a placebo pill targeted towards children when a nurse advised that she give her niece a Motrin tablet in order to alleviate the child’s hypochondria. The idea was that the Motrin tablet would provide a benign solution to the child’s distress. Buettner reasoned that a placebo would work just as well, but she was surprised to find that the drugstore did not carry them. In response, she and her husband created their own company to market chewable placebo pills for children. Ethicists question whether the pills are effective, as evidence shows that placebos are unpredictable. Furthermore, they pro-vide children with the false idea that all ailments can be cured by medication and force parents to engage in deception. However, Buettner argues that the pills will help stop overmedication and, in at least one study, children reported that the placebos were beneficial. - Tuua Ruutiainen

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The BioethicsProgramUnion Graduate CollegeMount Sinai School of Medicine

ONE YEAR MASTERS OF SCIENCE IN BIOETHICS CERTIFICATES IN BIOETHICS with specializations in Research Ethics,Clinical Ethics and Health Policy and Law

F O R M O R E I N F O R M AT I O N CO N TA C TAnn Nol teAssistant Director

bioethics@union.edu518.388.8045www.bioethics.union.edu

Accepting applications from highly qualified students with a passion for bioethics and a compassion for patients.

On-line courses with short,intensive on-site seminars, practica and capstone at Union Graduate College and Mount Sinai School of Medicine.

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s Barack Obama heads into his presidency, one of the most difficult challenges awaiting him will be the rectifi-cation of this nation’s trillion dollar healthcare system (Cutler et al). In order to provide a solution to the crum-bling infrastructure of healthcare and insurance, President Obama has proposed an ambitious and extensive

plan that addresses many of the criticisms facing modern healthcare. In healthcare, as in his other cabinet appointments, Obama has not shied away from picking influential leaders to operate and implement his new initiatives. Obama has assembled a team led by former House Majority leader Tom Daschle, the nominee for Secretary of Health and Human Services. His supposed nominee for the Deputy Secretary HHS is William Corr, the head of the Campaign for Tobacco-Free Kids (Allen).

The Obama-Biden plan is focused on a few central tenets: modernizing the healthcare field, expanding existing federal pro-grams, creating a new National Health Insurance Exchange, requiring children to have health insurance, and requiring busi-ness to provide insurance. The proposed $60 billion healthcare reforms seek to level the playing field by providing affordable and comprehensive healthcare. These projects are expected to be funded by removing the Bush tax cuts on people with incomes greater than $250,000. Obama’s plan aims to bridge the gap between the insured and the uninsured, the latter group comprised of over 45 million people (DeNavas-Walt et al). The plan addresses the rising cost of healthcare for both individuals and busi-nesses, and suggests a platform for which families will be able to save up to $2500 annually on healthcare (Connolly).

Obama has made numerous recommendations about bringing healthcare into the information age. His plan hinges on the idea that the current healthcare system can be made more efficient, and in doing so, can reduce the unnecessary costs of healthcare and the burden on individuals. His proposal seeks to eliminate the wastefulness of the current medical record system by mandat-ing an electronic health medical record system (Obama). Obama’s proposal cites figures which say that up to $77 billion can be saved through such efficiency mechanisms.

Obama’s solution to the rising cost of health insurance also lies in the belief that health insurance companies are exploit-ing consumers while reaping large profits and benefits. Thus the creation of the new National Health Insurance Exchange is a cornerstone of the Obama-Biden proposal (Obama). The Exchange allows individuals to enroll in the public insurance plan or buy coverage from a selected private company. Similar to the Federal Employees Health Benefits Program, the Exchange will provide coverage for medical services that can be transferred easily and affordably. Tax credits will be provided for individuals and families in need. Obama’s administration believes that giving consumers such public health insurance options will pool risk and force insurance companies to abandon their practices of overcharging and thusset competitive prices.

His government-led proposal is not without critics. Opponents of the plan say that a public health insurance plan could drive insurance companies out of business by having lower fees and a larger consumer base (Pear). Even so, insurance companies are largelyin agreement with Obama’s plan (Freking). While they oppose such facets of the plan including the business requirement for national health care contributions and state mandated coverage, the insurance companies are for the most part on board with Obama’s proposal.

In addition to its cost, the problem many uninsured individuals find with health insurance is its inaccessibility. Obama’s plan

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Obamaʼs Healthcare Plan

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suggests a solution for this problem by mandating that insurance companies cover pre-existing conditions and provide premiums that are not dependent on health status. Insurance companies would be forced to issue a reasonably priced policy to every applicant and disclose the amount of the premium being used for patient care.

Furthermore, Obama has also proposed mechanisms to combat the monopolistic practices of pharmaceutical companies. These actions would prevent drug companies from maintaining monopolies through their manipulation of generic drug manufacturers. Obama’s plan would allow individuals to purchase their drugs from abroad if they cost less. Obama has also proposed removing the legislation that prevents Medicare from negotiating for drug prices so that the resulting sav-ings could be reinvested in the health care system.

In order to help small business and employers provide health insurance to their employees, President Obama proposes the creation of a Small Business Tax Credit, which gives small business up to a 50% refund on health plans for employees. The Obama health care reforms also include provisions that would reimburse employers for catastrophic costs that may occur. For large businesses which do not provide adequate coverage or any coverage, Obama requires that they contribute to the national plan.

A major focus of the health care crisis has been ensuring that children have access to adequate health care. In his pro-posal, Obama has taken to task the issue of getting health coverage to all children including the over 8 million children without health insurance. His proposal mandates that all children have coverage. Obama also seeks to help children’s health in other ways including working with schools to implement nutritional standards in lunches. He also endorses giv-ing financial support to schools in the form of health screening services and physical education programs. Obama’s plan also calls for a continuation and expansion of existing programs such as SCHIP.

In addition to improving the healthcare system, Barack Obama has decided to devote additional resources to preventa-tive medicine. Disease management for such chronic illnesses as diabetes and heart disease is a large part of the Obama-Biden program. He also proposes a system of basing reimbursements on patient outcome. Obama has proposed funding for the training of health personnel and professionals in the form of grants and reimbursement so that practitioners can be prepared for future medical challenges.

While Obama has proposed many measures to repair the healthcare system, he has also focused on auxiliary aspects of health and medicine. For example, Obama has also proposed increasing funding for science and technology research (Obama). Obama has claimed that he will double the federal funding for basic research including a doubling of NIH funding over ten years. This comes as a relief for a number of scientists, who, including a record number of Nobel laure-ates, have endorsed Obama over the course of his campaign(Witze).

It remains to be seen what effect an Obama presidency will haveon the contemporary medical and scientific world. His widespread approach to healthcare change has both social and ethical implications. The impact that Obama’s support for basic science and stem cell research has on the direction of medical research will be important to observe(Broad). Wheth-er the uninsured will have access to healthcare, whether funding for healthcare research will continue to be supported, and whether the inequities of the modern health care system can be resolved, remain issues that will be closely monitored. Regardless of whether Obama is able to implement his proposals or not, it is nevertheless enlightening to see a politician who has, it seems, not ignored the will of the scientific community.

References 1. Allen, J. (2009, January 13). Obama taps William Corr as deputy health secretary. Reuters. Retrieved from http://www.reuters.com/article/politics-News/idUSTRE50C2T020090113 2. Barack Obama and Joe Biden’s Plan to Lower Health Care Costs and Ensure Affordable, Accessible Health Coverage For All. Retrieved from http://www.barackobama.com/pdf/issues/HealthCareFullPlan.pdf 3. Barack Obama: Connecting and Empowering all Americans through Technology and Innovation. Retrieved from http://www.barackobama.com/pdf/issues/technology/Fact_Sheet_Innovation_and_Technology.pdf 4. Broad, W. (2008, September 15). Presidential Candidates’ Positions on Science Issues. The New York Times. Retrieved from http://www.nytimes.com/2008/09/16/science/16science.html?_r=1&ref=politics 5. Connolly, C. (2008, December 5). HHS Will Be Shepherding Health-Care Reform. The Washington Post. Retrieved from http://www.washington-post.com/wp-dyn/content/article/2008/12/04/AR2008120403716.html?hpid=topnews 6. Cutler, D., Delong, J., Marciarille, A. (2008, September 16). Why Obama’s Health Plan Is Better. The Wall Street Journal. Retrieved from http://on-line.wsj.com/article/SB122152292213639569.html 7. DeNavas-Walt, C., Proctor, B., Smith, J. (2008, August) “Income, Poverty, and Health Insurance Coverage in the United States: 2007” Retrieved from http://www.census.gov/prod/2008pubs/p60-235.pdf 8. Freking, K. (2008, December 5) Insurers Like Obama Health Plan (mostly). USA Today. Retrieved from http://www.usatoday.com/money/indus-tries/health/2008-12-03-health-insurance-obama_N.htm 9. Pear, R. (2009, January 7). Daschle to Face Tough Questions on Competition in Health Insurance. The New York Times. Retrieved from http://www.nytimes.com/2009/01/08/us/politics/08daschle.html?_r=1 10. Witze, A. (2008, September 25). Obama Outlines Science Spending Boost. Nature. Retrieved from http://www.nature.com/news/2008/080925/full/news.2008.1135.html

InterviewQ A& Hank Greely

Interview conducted by Shirley Ahn, Megan Kauffman, Katie McCarthy and Tuua Ruutiainen

Our first question is, how did you first become interested in health, law, and bioethics?

I married a doctor.

Did it start during law school?I was practicing law in Los Angeles and I got set up on a

blind date by one of my fellow associates with her sister, who was a resident at LA County Medical Center. One thing led to another and we got married. About a year and a half later, I went into teaching and because I was married to a physician, that moved my interest toward health law. So in my second year of teaching, I started teaching health law. Of course, bioethics is one component of health law, so I began to get interested in bioethics as a result of teaching health law, which I did as a result of marrying a doctor.

How did your experience with the Supreme Court affect your perspective of health law?

I don’t know if it truly affected my perspective of health law. A Supreme Court courtship is a wonderful experience. If you ever get offered one, take it up. It is remarkable work-ing at a crucial institution but I suppose if anything, it helped me recognize that most of what’s important in health law in the health care system is not likely to appear before the Su-preme Court. Doing trials and analyzing cases is much less important in health law than in some other fields. Because so much of health care and health law is governed by the kinds of policy and regulations and reimbursement practic-es, it rarely makes it into the court system and almost never makes it up to the level of Supreme Court. Constitutional issues, at least the way our constitution is interpreted, are not completely absent but are rare in health law.

How did you become interested in specific fields within bioethics like neuro-ethics and stem cell research?

That was also a matter of chance to some extent. In 1991, Stanford was putting on a series of symposia to celebrate its 100th anniversary, the Centennial Symposia, and one of them was going to be on the Human Genome Project, which had recently been announced. There was a planning committee. The people putting together the planning com-mittee decided it would be good to have someone from the law school on the planning committee and I was the only person in the law school who knew anything about the hu-man genome project. So I joined the committee, which was chaired by Paul Berg, a Nobel Prize laureate in chemistry, and included David Botstein, a very famous and important geneticist who had been at Stanford but is now at Princ-eton, and Lucie Shapiro, a famous developmental biologist at Stanford. I ended up having a great time on the planning committee and the planning committee ended up deciding

that I should give the talk on health insurance. This was really my way of getting into the genetics world,

through health insurance. I was someone teaching health law who was primarily interested in the health care financ-ing system and the implications of genetic technology. I ended up giving a talk in January 1992 at the Centennial Symposia. I met a lot of the leading figures in genetics and in the ethical, legal, and social implications of genetics. Dan Kevles from Yale gave a talk just before mine and asked me to write up my thoughts for a chapter in a book he was edit-ing. It was really that symposium that launched me in the genetics area. It got me more interested in the field and it brought me to the attention of the people working in the field. And this was a result from a chance, from the univer-sity wanting someone from the law school and me being the only likely candidate.

My involvement in genetics really influenced my work in bioethics. I see the field of bioethics divided into three major categories. A lot of bioethics is traditional medical ethics, and another area is work on the ethics of doing research. My work largely involves the third area, the ethical, legal and social issues raised by new biomedical technologies. I worked on genetics since 1992. After Dolly was announced in 1997, I also began working on cloning, embryonic stem cell research, reproductive technology, human/nonhuman chimeras, etc. I started working on neuroscience in 2002. I now think of myself as trying to cover genetics, reproductive technology, neuroscience, human biological enhancement, research ethics, etc. I think I was at the right place at the right time.

I read a recent interview in which you mentioned a case in which a woman in India was sentenced to life in prison based on the results of an EEG-based lie detection test. What policy recommendations would you make for the use of the latest neuroscience technology in court?

Well, it shouldn’t be used unless we’re confident that it’s reliable. And even if a lie detection method was reasonably effective, we have to consider not only the percentages of accuracy and sensitivity but also the extent to which they’re accurate with different types of people, etc.

How far do you think we are from getting the technology?Until it’s reliable? I’m agnostic about whether we ever had

a very reliable neuroscience-based lie detection technology. It might happen within the next five years; it may never happen. I think a lot will depend on the effectiveness of countermeasures.

Another one of your areas of interest is genetic enhancement. In what ways does allowing greater access to genetic enhancement technology justify its use?

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Henry T. “Hank” Greely is the director for Center for Law and the Biosciences and the co-director for Program in Genomics, Ethics, and Society at Stanford University. Greely is also a Professor, by courtesy, of Genetics and serves as an advisor for California Advisory Committee on Human Cloning and California Advisory Committee on Ethical Issues in Biotechnology. His most recent publication titled “Towards Responsible Use of Cognitive-Enhancing Drugs by the Healthy” was featured in Nature on December 2008. Greely and his colleagues argued that cognitive enhancement has much to offer society and proposed actions that will help society accept the benefits of enhancement, given appropriate research and regulation.

Interview

There are a lot of arguments against human biological en-hancement and some of them I think are generally bad ar-guments and some of them are arguments that have some validity. One of the arguments I think is somewhat valid is the fairness argument. If there were significant human biological enhancements that were made available only to particular classes or nations and so on, that would be unfair to others and could lead to, potentially at least, some sort of entrenched set of social advantages. If that’s a concern, one way of dealing with it is to increase its access. For example, I think the most powerful enhancing technology with respect to intelligence is education. One thing we do in order to even out the potential advantages provided by education is to make education mandatory at least for the first 10 years. So that’s an old-fashioned kind of enhancement, albeit a powerful one. And our concerns about fairness and equality lead us to make it mandatory. If you came up with a new technological enhancement, like cognitive enhancement that substantially increased people’s intellectual ability, then it seems to me that it also might be one to make universally available, though probably not mandatory.

HyperSonic Sound is a new advertising technique, which plays sound only inside an individualʼs head when they walk in front of the beam of sound, regardless of his/her consent. In your opinion, what are the ethical implica-tions of this type of advertising?

I think that’s crazy. It should be and probably will be quick-ly banned. I just wonder how many pedestrian accidents or auto accidents it’s going to cause. It’s hard enough to walk across the street without suddenly hearing a voice in your head saying “Drink Pepsi” or whatever. So I think there’re a lot of reasons for this type of technology to be under tight control and should be under tight control. One of the prag-matic reasons for this is not to disturb people in the middle of doing something else important like trying to cross 42nd street. Some of them are more ethical reasons about allow-ing people to have some control over what messages they’re bombarded with. I think there are concerns over privacy as well. I don’t think you really have to reach ethical reasons with respect to this technology. It’s just stupid to allow the use of it in an uncontrolled way. Certainly one could imagine positive uses of it. Let’s say, you have people in a crowd and you want to put a button in their ear...You could imagine, I suppose, situations where you would want to use it but it’s putting a strain on my imagination and I have a pretty good imagination.

I think Disney is actually using it for its theme park, but that’s probably more understandable.

I mean if you want to provide it and people know it’s coming, I think the chance of (a), people are consenting to it and (b), the chance of really bad reactions to it, will be minimized. But randomly hitting up people with voices, bad idea.

I think it’s a nice example of the third branch of bioethics – ethical, legal and social implications of new technology. It’s really in a sense...I’m not sure if it really fits with ethics at all but the problem is technology assessment: how is it

going to affect society and if those affects are good or bad, and if they’re bad, how we can try to maximize its benefits and minimize its harms. For quirky and historical reasons, at least in the biological realm, technology assessment with social side effects is under the rubric of bioethics. Even if it doesn’t necessary have to do anything with Kant or Mill or any other philosophical approaches to practical ethics, the people in bioethics ended up being the ones who are asked to discuss these kinds of issues.

Actually the technology is also being used by the military. So I was just won-dering when you consider something used by the military versus civilians, do you, as a bioethicist, look at it in a different way?

Well, in a sense because the ones in the military are vol-unteers. They volunteered to be in the military, which is vol-unteering to be in a situation where a lot of what they do is not under their control. They’re voluntarily in that situation. And they’re also all competent adults. You don’t have to deal with issues of children. You don’t have to deal with issues of people who are not competent to make decisions. You don’t have to deal with issues of people who are part of something in a completely involuntary way. I don’t want to take the last point too far because you don’t necessarily volunteer to let the military to do anything at once to you. But you have given up an awful lot of your autonomy. One could imagine potential military uses for it, if you want to tell someone something on the battlefield and not let any opponents hear it. I do sort of wonder to what extent this is going to be any better than giving them a little device like Bluetooth that has a speaker in their ear where you can transmit something by a radio wave.

I think theyʼre actually using it against the enemy and theyʼre transmitting really high decibel sounds.

Now that’s an interesting application. I’ve heard about heat rays that are being worked on. Once you get into the issues of weapons, there are people who work on military ethics and the ethics of different weapons. I don’t think there is anything uniquely special about weapons that come out of biotechnologies. Some of them obviously raise special is-sues like biological warfare. But ultimately, I think that all weapons are intended to work against the enemy’s biological beings. So, I think the questions for a technology like this wouldn’t be significantly different from the sorts of ethi-cal questions that you would ask about any kind of military technology.

My other question is, to what extent do you think the 5th amendment should be applied to neurotechnology in the courtroom, such as MRIʼs and brain scans?

Well, the 5th amendment, you have to be a little care-ful about. Its actual application is a lot more limited than people think. All that the 5th amendment provides is that a person may not be forced to testify against him/herself. It only applies to situations where you are in court and it only applies to evidence that’s considered testimonial evidence. If the police want to seize your diary and the prosecution

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wants to introduce it at your trial, they can do that because that’s not forcing you to say something. If they want to take a blood sample to see what your blood alcohol level is, they can do that because that’s not forcing you to speak and an-swer, to give testimony against yourself. Having said that, I do think that the lie detection technologies, brain scan-ning technologies, technologies looking at emotions should be viewed as providing testimonial evidence that should be subject to the 5th amendment, but that’s an open legal ques-tion right now.

Recently you said that candidates may have the right to refuse to disclose genetic data. But their refusal is something that voters could and probably should hold against them, in a Wall Street Journal article called “Will We Vote Against a Candidateʼs DNA”?

I remember the article, did I say “should” hold against them?

Yes. Do you think that the candidates should disclose genetic data to the public even though the information could lead to misunderstandings about the actual health state of the candidates?

No, but I think that the candidate should disclose relevant health information to the extent that the genetic data is rel-evant to their health information. I think some information about that should be disclosed. Let’s say that we’re ten years in the future and full sequence genomes are cheap and com-mon. The public has the right to ask presidential candidates if they will convey to the press and to the public their full se-quence genome and the right to take somebody’s refusal into account. Personally, I don’t think you should demand more than medically relevant information. For example, this year in the presidential race, all of the candidates provided some level of health information – although Sarah Palin didn’t do it until three hours before Election Day. It varied from John McCain giving reporters access to 1100 pages of his medical records for about four hours to Barack Obama providing a one or two page letter from his doctor going over his health status. I think genetic information should be treated simi-larly. People should expect to know whether there is some-thing to be told, to have a candidate disclose whether there is something significant in his/her genetic information. And if the candidate isn’t willing to do that, then I think the pub-lic should weigh that as one factor in whether they want to vote for this person or not. I don’t think that there is any good reason to, for the public to expect someone to turn over their entire sequence. Make the relevant conclusions from their genetic data available is how I would more carefully expand that quotation.

I recently read an SF chronicle article and it said that you are creating a database of scan appearances in California courts?

Yes, we’re trying to.

It appears there have been several cases of judges admitting brain scans as evidence, which critics call the CSI effect, in which juries have come to ex-pect the same kind of scientific crime solving techniques depicted in forensic crime TV shows. So according to your most recent database of scan appear-

ances, how prevalent is the CSI effect? We’re just getting started. I don’t have any results. Not only

do I have not any results that I can share, I don’t have any results at all. We really are just getting started trying to col-lect that. We do know that they’ve been used in some large link criminal cases. What we’re actually trying to do is get information on each and every time a brain scan has been used in a criminal case in California in the last 5 years.

Do you know if itʼs prevalent among any other states or any other coun-tries?

From talking to some people who’ve been expert witnesses in these cases, it’s certainly not limited to California. We decided to start with California because we know that it’s been used at least sometimes out here and California is of a manageable size. I don’t know of its use outside the United States; I just don’t know one way or the other. My guess is that it’s probably more prevalent in the U.S. than else-where. Though, I don’t think that it’s terribly prevalent yet in the United States. There aren’t that many cases where the defense council might hope that the information would be useful.

In last yearʼs New York Times article you acknowledged that using brain scans to predict violent tendencies can be useful, as long as the scans are used within limits?

It could be useful if we could do it.

Do you think that there are any other cases where...?Let me stress that. I don’t think that, I don’t think I ever

said that was possible today, but should we be able to do that, it could be useful.

Do you think there are any other cases in which the brain scans can be useful today?

Today? Certainly, there exist a few clear-cut situations where structural scans are useful for determining whether or not there is a brain injury. But I don’t think that there are any cases right now where fMRI evidence is likely to be useful in court. It is actually used sometimes clinically in medicine. So, if you’re a neurosurgeon and you need to take out a tumor that you know is close to the visual cortex, you may do an fMRI scan in order to be confident that you know the limits of your patient’s visual cortex because those are not always clearly defined. There are significant amounts of individual variation, only in the sense of a couple milli-meters, but a couple millimeters can be significant in doing brain surgery. I do think that in the near future we may well see brain scans, probably fMRI’s, though maybe other types as well, in the courtroom. I think we tend to focus too much on fMRI and tend to overlook particularly some of the older EEG technologies that are still being refined and may be useful in determining mental state. The use of neuroimaging that I think may be most powerful in the near term, though I don’t know if it will work, is to detect pain. Determining whether somebody is truly in pain or not. A major issue in a lot of cases, not so much criminal cases but in automo-

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bile accidents, personal injury cases, social security disability cases, and workers’ compensation cases, is a question about whether the person who claims chronic pain as a result of whiplash or chronic lower back pain really has pain or not. That is an example of an area where I think neuroimaging may turn out to be important and fairly soon.

So I guess itʼs only limited to those uses and medical uses today?Well, I don’t think the pain use is available today. I think it

may be available soon. Right now, the whole fMRI technol-ogy is only about 15 years old. I think we are at the edge of understanding the technology better in ways that may lead to it being used in court to determine things like pain, like bias, like deception, but I don’t think we are there yet with any of those. However, I think within five to ten years some of these are likely to be admitted in court.

Finally, how do you think the election will affect bioethics?I think we will get a new bioethics presidential council or

commission because every administration seems to create a new one: President Clinton had the National Bioethics Advisory Commission and President Bush had the Presi-dent’s Council on Bioethics. I think that President Obama will have yet a different group of people under a different title, and I think that is actually important. I think that both NBAC and the President’s Council on Bioethics have played important roles in directing society’s attention to particular issues.

I think the Obama administration is likely to have a less conservative and religious approach to bioethics than the Bush administration had. I think Obama is likely to make some differences in policy in some areas of government ac-tivity. Also, I think that the Obama administration, if it has the opportunities for funding and also if it puts more of an emphasis on the potential benefit to society than the Bush administration did, then it is almost certain that it’ll raise new and interesting bioethical questions to the extent that it funds more or carries out different research in biological sciences.

One last, fairly discrete thing is that I think the Obama

administration will certainly change President Bush’s policy with respect to funding of embryonic stem cell research.

What do you think the next big issue in bioethics will be? Do you have any ideas?

I have a lot of ideas. Niels Bohr the physicist used to say, “It is always hard to predict things, especially the future.” It’s actually easy to predict the future. It’s just hard to be right. I think that, in genetics, the issue is going be the $1000 ge-nome, cheap access to the full-length sequence. I think that is going to raise a lot of issues that we are not even close to being prepared to deal with.

In neuroscience, I think it could be mind reading through fMRI and the kinds of bias, pain, deception, emotion, and other sorts of things we have touched on. It could also be an issue of enhancement – say if drugs to improve memory for people with dementia turn out to have a significant effect on healthy people, like students, especially pre-meds, who are studying for an organic chemistry test – that could raise some big issues.

I think the stem cell issues will likely calm down. I think there may be some real issues about end of life care and may-be even about abortion with respect to neural activity. We may be able to use scanners and other things to try to get a sense of how much brain activity is going on either with people in persistent vegetative states or in fetuses.

But the next big issue could be something completely dif-ferent: synthetic biology issues, creating new genes or syn-thetic life forms may explode. It is hard to know.

I do think we are living through many different and more revolutions of biological sciences, in part because biology is so important to us as biological organisms; everything we are, we do, we eat, is biological. And because it is so impor-tant to our definitions of ourselves, I think the advances in biological sciences will throw up new ethical issues in the way that advances in, say, plate tectonics are unlikely to do. So, I am confident there will be some hot, new bioethics is-sues. I have my own guesses about a couple things that could fill that role, but it might be anything. All I am confident of is that there will be something.

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Q& : Dr. Albert Yan is the Chief of the Section of Pediatric Dermatology at the Childrenʼs Hospital of Philadelphia and an Associate Professor of Pediatrics and Dermatology at the University of Penn-sylvania School of Medicine. After completing an undergraduate degree in Philosophy at Princeton University, Dr. Yan attended the University of Pennsylvania School of Medicine, graduating in 1993. Throughout his time in medical school, Dr. Yan demonstrated great interest and activism in the field of bioethics. Along with a group of colleagues, Dr. Yan pioneered a journal for bioethics while he was a medical student. The journal, an unprecedented publication—written by medical students, for medical students—gained much attention as a forum of knowledge and debate. A long-time affiliate of the university, Dr. Yan shares his experience in launching the journal as well as his perspective on the past, present, and future for bioethics

We understand that when you were a medical student at Penn, you gener-ated a lot of student interest in bioethics. When did you first realize your own interest in bioethics, and how did you go about spreading that interest to your colleagues?

My own interest in ethics stems from my undergraduate experience at Princeton. As a philosophy major, I gravitated most towards ethics. I studied mostly classical Aristotelian ethics and the ethics of friendship, of relationships between individuals that influenced their behavior. It is not a stretch, then, to see how this might have blossomed into an interest in bioethics, a practical realm of ethics that influences and informs the things I now do on a daily basis. An interesting note is that while I was studying philosophy at Princeton, half of the students in my department were headed towards medical school, so philosophy was a popular choice for those choosing medicine as a career, indicating that many of us entering medicine then felt strongly that we needed ap-propriate philosophical preparation to become physicians.

When I came to Penn, I wanted to kind of expand my interest in ethics to bioethics, in particular. And, at the time, there wasn’t a strong presence of bioethics at Penn. While several brilliant individuals at the University were involved in various aspects of bioethics study (Renee Fox at Penn and Paul Lanken at HUP, for instance), there were no formalized programs in bioethics training, there were no specifically identified bioethicists on hospital ethics com-mittees or on staff, and the Center for Bioethics had not yet been established. When I arrived, the time was ripe for a bioethics presence at Penn. With only a little coaxing, a ground-swell of interest among the students arose. A few of my friends and I got together and decided that it might be an interesting project to create a bioethics publication

that could galvanize our interests and, in the process educate us from the ground up about contemporary bioethics issues since bioethics issues were not yet already integrated into the traditional medical school curriculum. We wanted to do something that could be a first step towards formalizing bioethics in a medical school curriculum. How did you go about establishing a bioethics publication?

We were realistic and decided to start small. We intended that it would be an in-university publication that we would start with a small seed grant that could then cover the pub-lication costs, and everyone involved would volunteer their time without pay. We’d anticipated a circulation of about one hundred or two hundred people —starting with the medical school student body. And then things just snow-balled.

We first created an ethics advisory board of bioethics ex-perts. We realized that we knew little about the subject ourselves, and believed that having these advisers on board who knew more about ethics than we did would be an es-sential first step. They could provide us guidance about (1) learning more about the field itself, what books to read, who the leading thinkers were on specific questions or is-sues; and then (2) to help provide us with introductions to those people. With Renee Fox as our advisory board chair, a group of twelve brilliant ethicists from around the country very generously volunteered their time and commitment to this project. Once the advisory board was in place, we began the groundwork for fundraising and development. In short order, we were very fortunate and over $35,000 with most of the commitment coming from the University and Health System itself. As a result, we were able to expand our circu-lation to medical students on a national level and the journal

Interview conducted by Emily Knudsen-Strong, Ingrid Lindquist and Elizabeth Rubin

continued for 6 or 7 years with a circulation of several thou-sand students, faculty, and alumni around the country that we hope learned something about medical ethics. Not too bad for a medical student project.What was your approach to addressing bioethical issues in the journal?

My colleagues – John Alexander, Jeffrey Weinberg, and Linda Dimeglio – and I were all avid readers of newspa-pers and medical journals. In deciding on topics, we worked by consensus and drew from our own experience as future clinicians. Once a topic was identified – drug legalization, HIV testing, use of animals in biomedical research, genetic testing - we then recruited individuals who had written ex-tensively or were well-known proponents or opponents to provide point and counter-point since we wanted to inspire debate and discussion on these controversial topics. While most of us have our own internal “gut” feelings about what’s right and what’s wrong, what many of us don’t realize are some of the ramifications of those points of views when they impact on real individuals or with regard to having to gener-ate policy that may affect large numbers of people.What issues did you include in your first publication?

We wanted to start with something highly controversial that would generate debate. As second-year medical stu-dents, we were had just begun our pharmacology course, and drug legalization was a logical beginning. While there were other “hot” topics to consider at the time, the topic of drug legalization seemed to stir passions. And while many of us in the medical profession might think it obvious that sub-stances that could alter cognition and behavior should be controlled, I don’t think any of us considered what benefits or ramifications a drug legalization policy might engender. Many of us were not familiar with how such policies ex-isting in other countries have done for crime statistics and addiction statistics. Those were some of the things we had an opportunity to learn about as part of our investigation into that issue. Our second issue focused on the bioethical issues of informed consent and confidentiality using HIV as a model for discussion. At the time, it was a huge issue. We asked our authors and commentators to provide their vision of the next 5, 10, or 20 years.

One of the limitations of bioethics study has traditionally been that it is a reactive study. Once an issue arises, we con-front it. One of goals was to be proactive and ask experts about anticipating incipient or impending ethical issues that they saw arising in bioethics to prepare for problems we weren’t yet dealing with. Were a lot of the individuals with whom you started the journal initially interested in bioethics, or do you think they were turned onto the idea by situations they encountered in medical school or clinical areas?

Those who weren’t already interested in bioethics might have joined our project because they at least saw its impor-tance in how it informs medical practice. As we all started our clinical rotations and interacted with patients and clini-cians directly, its relevance became obvious. For instance, if you got a needlestick, what kind of information should you keep private and what should be available as public knowledge; that is, what is private, what is confidential, and

what should be public? Can you violate a patient’s protected rights to privacy and test someone against their will for an exposure to an infectious disease that might become a public health risk for those close to you? More practically, how do you interact with the patient whose needle you got stick with? How much do you, then, divulge to them if you’re requesting testing of their blood? And, how much informa-tion can you reasonably ask for? So, these became much more relevant because we were dealing with them on a daily basis. Nowadays, specific policies are in place that are com-monplace, but at that time, these issues were not so clear.When you were a medical student, to what extent were the teachings of bioethics part of your curriculum?

There were no specific bioethics courses per se. Howev-er, bioethics issues were included as part of other elective courses on medicine & literature, or core clerkships at the discretion of the course director.As a pediatric dermatologist, what sorts of bioethical situations do you confront? How do the issues you must address now differ from those you initially experienced as a medical student?

You might not think of pediatric dermatology as a field that deals with life and death issues that would engender bioethical dilemmas. Here are some examples to provide you and your readers with some food for thought.

Assume you are called to consult on an infant just born with a severe life-threatening disease known as harlequin ichthyosis. You know that that the disease if left untreated, is fatal. If treated with intensive pharmacologic therapy, may still result in the child dying, but if the child survives, will leave him or her with a debilitating skin disease, other associated diseases such as thyroid dysfunction or rheuma-toid arthritis, and shortened life span with a significantly decreased quality of life. How aggressive should you be with offering treatment to this family? While the ultimate choice may be left up to the family, your own moral beliefs will likely influence how you counsel the family in this instance.

Consider experimental therapies for debilitating genetic diseases such as epidermolysis bullosa. In this disorder, mutations in structural skin proteins result in mechanical fragility of the skin leading to recurrent cutaneous and mu-cosal blisters that can be painful, cause scarring, predispose to infection and malignancy in the more severe forms of this disease. Let’s assume you follow a patient for this con-dition, and you find out that there exists an open clinical trial investigating the possibility that bone marrow trans-plantation might allow the transfer of stem cells into the skin that can compensate for the dysfunctional skin protein in affected patients, and potentially provide a treatment (or even cure) of the disease. If it works as described, it could be a phenomenal discovery. If, however, it does not, you then commit these affected patients not only to a continued life-long tendency to blistering, but also other conditions such as graft-versus-host disease from the transplant that can make blistering worse, and immunosuppressive treatment that can increase the risk for skin malignancy down the road. How do you counsel families appropriately about these risks when the likelihood isn’t really known?

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What do you see as a current leading issue in the field of bioethics, and what do you predict for the future of that issue?

I think use and potential misuse of genetic information is probably our most important near-term problem.

Our genetic information is unique to each individual, can identify us, and can predict with good reliability whether someone who has manifestations of a disease does so be-cause of a known genetic mutation. What’s evolving is our knowledge about what to do with people who have mark-ers for disease but don’t show signs of the disease and how should we use that information.

Having that information may be useful to us as individuals because it might help us avoid behaviors that might make it more likely that we will have a disease. Say you iden-tify someone with a lung cancer gene that is triggered by cigarette smoking. Avoidance of cigarette smoking could be very important to that individual. Or identification of a gene that predisposes to breast cancer may indicate prophy-lactic mammectomy may be life-saving.

At the same time, while that may be useful to us and our physicians to inform us of risk, insurance companies and employers may want that same information to determine insurability, insurance premiums, job placements, and may discriminate on that basis consciously or unconsciously if that information is made available.

Knowing that a patient is genetically at risk for developing a health problem if exposed to occupational hazards would be helpful to the patient, but discriminating against him or her for insurance coverage would not be in the best interests of the patient.

We can hope that laws such as the recently passed Genetic Information Non-Discrimination Act of 2008 will help to protect us from genetic discrimination as we only just begin to understand to decipher our genetic code and interpret its ramifications.What do you see for the future of the field? Are there any current issues which you predict might reach some form of resolution in the upcoming years?

It’s heartening to see what a wonderful bioethics presence Penn now has.

I think we have begun to understand just how important bioethics is to the clinical practice of medicine in terms of how it affects our patients, us as clinicians and counselors since our patients depend on us to give them the informa-tion to make correct decisions. Having informed physicians and bioethicists to help us navigate and anticipate medical ethical issues is essential to the ethical practice of medicine. This is especially important as our sophistication improves with regard to genetics and neurobiology which purport to predict our behavior and health.

Just as importantly, projects such as yours - the Penn Bioethics Journal – is just what we need in medicine. It’s something that will engage students in bioethics early on in their careers and show them the value of understanding these issues to better inform them and prepare them as fu-ture physicians.

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magine wandering around the mall – as you pass various stores, cries of “50% off sale!” and “Buy one, get one free!” can be heard, but only inside your own head. Although this sounds improbable, it may in fact become the most prominent advertising tactic of the 21st century. Elwood Norris, president of American Technology Cor-

poration, invented Hypersonic Sound (HSS) in 1992 and has since streamlined this technology. HSS allows for sound to be emitted in a focused beam, much like laser, so only a person directly in its path can hear it. This limits noise pollution and certainly makes the sound hard to ignore – after all, it is echoing around inside your own head. The list of interested companies is long: “Wal-Mart, McDonald’s, Dolby Laboratories, both Coca-Cola and Pepsi, major TV networks and film studios, cellphone makers and museums, and, of course, Disney.”1 Already, an advertisement for A&E’s paranormal televi-sion series stands in Time’s Square; as people walk by, a woman’s chilling voice whispers, “Who’s there? Who’s there?” – an experience many find disconcerting.

These negative reactions raise questions about the sanctity of one’s mind, which has long been considered a place of individual privacy, a realm that could not be penetrated without some form of consent. It This feedback also raises ethical questions about the use of this technology; for example, one woman wants to install the HSS technology in her lover’s car to constantly transmit the message, “Marry Donna…”2 Beyond the interest of corporations and civilians, the Army has also taken definite notice of Norris’s invention for its potential as a “nonlethal weapon.” This HSS technology allows for 120-decibel sound to be transmitted at enemy ships, causing the bones in their soldiers’ heads to be brutalized, regardless of any attempt to block out the noise, since it instantaneously causes “vomiting, migraines, and loss of equilibrium.”3 The Navy is considering outfitting every ship in its fleet with this technology, indicating the scope of HSS’s potential.

However useful this device may prove, its ability to penetrate the mind of individuals, a common theme among emerg-ing neurotechnology, raises questions regarding our right to “mental privacy.” Paul Root Wolpe, a bioethicist and

Senior Faculty Associate at the Penn Bioethics Center, claims that, “if the skull is not an absolute domain of pri-vacy, there are no privacy domains left.”4 He believes that issues regarding the “civil rights of the mind” will be

at the forefront of debate during the 21st century. Arthur Caplan, Director of Penn Bioethics Center, echoes this sentiment, claiming a moral code that governs these issues must be articulated

in the near future5. Hypersonic Sound is not the only new technology worrying ethicists and the public

alike, in India a brain scanning technique known as a Brain Electrical Oscillations Signature Test (BEOS) was used as the most conclusive piece of evidence in two murder trials6. This test involves electric probes placed on the subject’s head which take pictures of the brain as he or she responds to questions; the responses to these questions can demonstrate whether or not the person is lying. However, BEOS is still considered by many to be untested and, therefore, not a valid means of conviction. This desire to use brain imaging in the courtroom is not unique to India; in the United States, technology is also being developed that could be used in criminal trials or even to deter-mine a person’s mindset or degree of racism. In a study done by Phelps and his colleagues at NYU and Yale, functional MRI (fMRI) was used to measure subjects’ brain responses to unfamiliar black and white faces and found a correlation between the activation of the amygdala in the brain and the degree of negative evaluation of black faces7. In another study, conducted by Greene, fMRI was used to map brain activity when weighing decisions, finding that the emotional centers were more active when a decision was made based on feeling instead of rationale8. It may even be possible to determine sexual preference, as neural activity in the limbic system can be detected when an individual is shown a stimuli to which he or she is strongly attracted9. The eventual legal applications of these studies range from determining whether a person

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is relaying a “false memory” instead of a true one, whether a person is lying, or even if a person is likely to continue to commit a violent crime.

Such possibilities are both exciting and terrifying. The idea that brain imaging could be used to determine if criminals may commit another offense seems eerily familiar, drawing from science fiction movies such as Blade Runner and Minority Report. The scenarios of these movies, such as the unsettling idea of a “Pre-Crime Unit,” evoke strong viewer responses which have not yet been raised by the general public regarding the fast development of neurotechnology. These studies, while still embry-onic, raise a spectrum of moral and legal questions. The most important question raised is one of privacy. As this technology develops, who should have access to it and for what means? Should employers be able to determine whether you have negative feelings towards another race? Should law enforcement be able to use brain imaging to determine whether you have commit-ted a crime? To what extent does the 5th Amendment, which prevents an individual from being “compelled to witness against himself,” legally allow a suspect to refuse a brain scan because of the potential for self-incrimination?

Overall, I believe the primary objective of neuro-researchers should be to determine the accuracy of these tests and the extent to which they can be correctly applied. In the future, all individuals should retain the right to decide for themselves whether they wish to undergo any of these neurological tests, as the information gathered may not always be in his or her best interest to have available to others. Even criminals should have the option of undergoing an fMRI scan, much as they do a polygraph today; furthermore, none of these tests should be presented as conclusive evidence in and of themselves until their accuracy is proven. At this point, there exists too much potential to ruin lives on the basis of questionable tests. Despite the advances be-ing made, the mind-brain connection is still a mysterious one, and each individual is entitled to privacy and sanctuary within his own mind. Because of the large potential for abuse of this emerging technology, the government, as directed by the public, should begin early in raising awareness and determining the extent to which these techniques can be applied and affect the daily lives of individuals. If the public takes a back seat on these issues, we may find ourselves living in a world where advertise-ments abound inside our own heads and the potential for crime, racism, or mental disorders determine the course of our lives.

References1. The Sound of Things to Come; http://query.nytimes.com/gst/fullpage.html?res=9405E6D91731F930A15750C0A9659C8B63&sec=&spon=&pagewan-ted=12. Why next Civil Rights http://www.wired.com/techbiz/people/magazine/16-04/st_thompson3. Minority Report Society http://subalternmedia.com/?p=9824. Monitoring and Manipulating http://www.bioethics.upenn.edu/pdf/wolpe_hastings.pdf

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Having been tried and convicted for rape, 48-year-old William Coleman has gone on a hunger strike in protest of what he believes to be an erroneous conviction. With that imposition of hunger comes more than 100 pounds of weight loss for the man and a whirlwind of bioethical controversy for the civil authorities responsible for carrying out Coleman’s eight-year prison sentence. At its core, the force-feeding debate is a dilemma of physical autonomy. On one hand, the prisoner’s body belongs to no one but Coleman; on the other hand, we, as a society, have an obli-gation to preserve life.

Since Roe v. Wade, legal precedent has pointed to absolute autonomy over one’s own body. More recently, these long-established legal precedents have come under increased scrutiny, especially in terms of patient-assisted suicide. With the exceptions of Oregon and Washington, no state legally allows patient-assisted suicide, even in cases of extreme physical or mental anguish. The rationale here is that one’s right to life is fundamental to all other rights. Indeed, Coleman’s right to his body is a derivative of his right to life. What is more, the preservation of life is an obligation; that is, it is a right made duty. In this way, the idea of contractual consent is transcended by the more basic theme of inherent human dignity.

Prison authorities desire to keep Coleman alive by way of intravenous nutrition while Coleman desires to con-tinue his hunger strike. On the surface, it appears that no contract can be reached because Coleman does not consent to the medical treatment being imposed upon him by court order. Coleman is engaging in the hunger strike in order to protest the court’s conviction. Intravenous nutrition does not subvert this protest; in fact, it quite nearly galva-nizes it- Coleman is so set in his quest for justice that only forced intake of food can make him eat. Conversely, it is clear that the court order that mandated the force-feeding did so not in an attempt to undermine Coleman’s protest, but simply to keep him alive;Coleman’s 100-pound weight loss will not be erased by intravenous nutrition.

Coleman’s refusal of intravenous nutrition does not stand up to the criteria germane to violation of social contract. Legally, a contract is set by the consent of two competent parties over some issue. Of course, all social contracts must exist within the parameters established by the rule of law of the given society. Prostitution, for example, involves the mutual consent of two competent adults to exchange sex for money. Yet, where prostitution is illegal, this technical contract is invalidated by existing outside of the parameters established by the rule of law. Prisoners, by definition, exist outside of the rule of law and so do not retain the same contractual rights as those citizens who exist within the law. In this case, it is obvious that Coleman’s refusal to consent to intravenous nutrition is not consistent with

the consent (court order) of civil authorities. But, because Coleman is a prisoner, the normal rules of contracts are in-applicable. To treat the contracts of prisoners by the same standards as those of non-prisoners would be to subvert the entire legal system.

The crux of Coleman’s protest lies in his extreme weight loss; only a man deeply convinced of his innocence would put his body through such torture. Intravenous nutri-tion would work only to keep Coleman alive and not gain weight. Intravenous feeding involves the daily injection of essential vitamins, fats, proteins, and carbohydrates. Intra-venous nutrition resembles food only in the sense that it provides the sustenance necessary for human life. In a way, such a procedure would perpetuate Coleman’s protest as he cannot very well protest his conviction from the grave.

Even as a means to an end, the hunger strike is immoral and unjustifiable. Coleman does not want to die but only to draw attention to the alleged injustice of his current circumstance. Self-inflicted hunger and pain is an inherent evil that remains independent of any nobility that may or may not exist in the ultimate goal of freedom. This is not to say that Coleman, as a prisoner with few rights, does not have the right to protest what he believes to be an unfair decision; in fact, protest of the court decision is one of the few rights Coleman does have. The rub lies in the means by which Coleman is allowed to exercise this right. An anar-chist can verbally protest the abuses of government all day, but he or she should be sent to jail if the protest becomes violent. What is more, it is wrong to equate force-feeding with an attempt to curb Coleman’s right to protest.

Historically, it has been a given for prison’s to remove any objects that an inmate could use to inflict harm on himself or others. Having committed an apparently heinous slight against the established rule of law, prisoners transfer, to civil authorities, bodily autonomy. For instance, inmates on death row are on a constant, state-sponsored suicide watch to ensure they do not take their own lives before the state has the chance. The rationale here is that the inmate, through his or her actions, has waived certain rights inher-ent to law abiding citizens. Drawing an association to Coleman’s scenario, it is clear that such extreme weight loss paired with a dogged commitment to continue the hunger strike is tantamount to suicide.

Assuming that he is innocent as he says, William Cole-man is conducting his hunger strike under the pretense that civil authorities will have been responsible for the unjust imprisonment of an innocent man. At its base, this puts an idea of justice ahead of the well being of a person. Ideology kills people all over the world every day, and, as an ideologue, Coleman should not be ignored. His protest is important only as far as his innocence and no farther.

To Feed or Not to Feed? Daniel Albornoz

CLINICAL ETHICS / HEALTH POLICY FELLOWSHIP WITH MASTER’S DEGREE

The University of Chicago-MacLean Center for Clinical Medical Ethics invites recently trained physicians to apply

for a two-year research fellowship in clinical ethics and health policy. Fellows are supervised in ethics consultation,

conduct a mentor-guided research project, and pursue a Master’s degree in a related field. This training program

prepares physicians for academic careers combining clinical practice and ethical and policy issues. The stipend

is $50,000 per year.

Applications must be submitted by February 28, 2009 and are available at:

http://medicine.uchicago.edu/centers/ccme/fellowships.htm

For questions, email Dr. Mark Siegler at msiegler@medicine.bsd.uchicago.edu.

The University of Chicago is an Affirmative Action/Equal Opportunity

Employer.

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Ethical Issues in the Advent of Genetic Testing

IntroductionAn individual’s genetic information determines the pro-

duction of all bodily proteins which interact to develop the fully functioning human body. Many diseases are caused by the absence or abundance of specific proteins, hormones, or enzymes. Because the genetic code determines the produc-tion of proteins, the absence of a relevant gene, presence of an extraneous gene, or even a single nucleotide mutation within a gene can induce the malformation, underproduc-tion, or overproduction of proteins that result in bodily mal-function.

There is already strong evidence that hypertension, heart disease, various cancers, and response to environmental or pharmaceutical agents are significantly associated with an individual’s genetic makeup (Munson, 2004). Tay-Sachs dis-ease and Huntington’s disease are only a few of the known genetic disorders. Women with a mutation in the BRCA1 or BRCA2 genes are known to be 3 to 7 times more likely to develop breast cancer compared to those without mutations (National Cancer Institute, 2002). The presence of a muta-tion in the blood clotting Factor V Leiden gene can increase an individual’s risk of blood clotting up to 90-fold (Bertina, 1997). Numerous researchers are currently studying gene associations with many other conditions as well, including schizophrenia and diabetes. With the expansion of genetic knowledge, our understanding of the nature of disease can be expected to grow exponentially.

Genetic testing can occur with as little as one drop of blood or a small cell swab and can be completed in adult-hood, childhood, or prenatally. However, much controversy exists with testing. While genetic tests have the potential to benefit patients, results may only lead to stress or genetic discrimination by insurers or employers. These detriments

have induced fear among many patients considering testing. Because genetic information can both benefit and harm pa-tients, care must be taken to ensure that genetic information is not misused; greater governmental regulation is necessary. Patients should be well informed prior to testing and testing should only occur if it will benefit patients.

The PromiseKnowing that you are at an increased risk for disease may

instigate positive lifestyle changes, increased medical sur-veillance, or improved medical care. These tests may improve health care quality by early detection and treatment of a condition. With early diagnosis, preventive measures can be taken to potentially avoid more expensive future treatment. Genetic test results also have the potential to aid health care practitioners in selecting patient-tailored pharmaceuticals and medical interventions. Genetic tests are already being used in the selection of drugs and dosages in chemotherapy treatments ( Jenkins and Lea, 2005).

Genetic testing can also give parents crucial information to assist in informed reproductive decisions. For example, a couple discovering that they are carriers of Tay-Sachs with a high probability of having a child with Tay-Sachs disease may decide not to conceive and instead may adopt to avoid unnecessary pain and suffering a conceived child may ex-perience. Prenatal testing can also be done, but is it contro-versial as parents may decide to abort if they discover any unwanted traits in their future child. What is best for the unborn child is often a matter of controversy. Some argue that abortion is preferable to bringing a child with a painful disease like Tay-Sachs into the world. But others contend that abortion is immoral.

The ability of prenatal or newborn genetic testing to no-

Genetic information is continually emerging in medicine, health care, policy, and social evolutions. Since the discovery of the structure of DNA in 1953 and the completion of the Human Genome Project in 2003, our understanding of the genetic bases of life has grown considerably. Association studies have indicated that having certain genes may significantly increase an individualʼs susceptibility to developing various cancers, hypertension, heart disease, and numerous other conditions. Genetic information has the potential to change clinical practice and reform health care in the future. But the ability to test for genetic mutations and disease susceptibilities carries numerous ethical implications. This paper outlines several core ethical issues raised in the growing application of genetic testing and makes recommendations for testing policies. Among other requisites, oversight of genetic testing is necessary to protect patients and avoid unnecessary expenditures.

Benjamin Schanker*

* BOSTON UNIVERSITY. 173 BAY STATE RD, BOSTON, MA 02215. BSCHANK86@GMAIL.COM

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tify parents of their child’s impending disease, though, may allow preparatory steps or lifestyle changes that positively affect the child’s development. A classic example is Phenyl-ketonuria (PKU), a serious disorder induced by an absence of an enzyme needed to metabolize the amino acid phenyl-alanine. When high levels of phenylalanine are ingested in the diet, the inability to break down the amino acid induces mental retardation. When an infant is discovered via genetic testing to have PKU, dietary changes can be made and in-take of phenylalanine can be limited, significantly reducing mental retardation. The state of Massachusetts began re-quiring newborn screening for PKU in 1963 and since then most states have introduced a similar mandate. Newborn screening for numerous genetic diseases is a common prac-tice in most states, with screened diseases including every-thing from thyroid conditions to hemoglobin pathologies (Kaye, Accurso et al., 2006). Some states, like Minnesota and Indiana, already test newborns for more than 50 differ-ent conditions.

Important to consider, though, is that disease is not solely determined by genetics. Environmental factors play a sig-nificant role in the development of disease. Furthermore, only about 2% of genetic disorders are single-gene disorders. Many diseases instead involve multiple genes or multiple gene components. Thus, while genetic tests may reveal the presence of a mutation, disease is not certain to occur. There is a significant distinction between having a genetic muta-tion and being diagnosed with a symptomatic disease.

To Test or Not to Test?In clinical settings, physicians must often decide when and

when not to recommend genetic testing. If a genetic test is to be justified, it should either increase a patient’s quality of life or prevent future harm. Yet maximizing benefit and minimizing harm are rarely clear-cut. On one hand, know-ing that you are at an increased risk for disease may instigate positive changes in lifestyle, health care, or decision mak-ing. But on the contrary, discovering that you are likely to develop a disease in the future may induce years of unneces-sary distress, which can not only be detrimental to physical health, but may decrease quality of life. Patients may not want the burden of knowing that they are likely to develop an incurable disease like Alzheimer’s later in life.

Critics of genetic testing argue that results are purely sta-tistical and that uncertain results and lack of practical con-sequences render genetic testing ineffective and wasteful (Hubbard and Lewontin, 1996). They assert that the clini-cal utility of genetic testing is limited. Many also recognize that testing of minors may result in significant psychosocial harm (Wertz, Fanos et al., 1994; Fryer, 2000; Duncan, Sa-vulescu et al., 2005), including self-esteem issues or altering how the child is viewed by the family.

Proponents, on the other hand, argue that test results pro-vide realistic expectations of the future (Robertson and Sa-vulescu, 2001), and can often induce more positive outcomes compared to not undergoing testing. Patients knowing their probable future can plan their lives accordingly. Proponents

of prenatal testing assert that parents have a moral duty to their children to prevent future harm, and should therefore undergo testing (Purdy, 1995).

Genetic testing may sometimes be in advance of our abil-ity to treat a patient. For example, Huntington’s disease is an adult-onset disease that can be tested, but the condition is largely untreatable. It seems impractical to test when no treatment is available. If no tangible benefit will result, com-pleting a genetic test is likely to result only in grief, and should not take place. A study conducted in Wales indi-cated that the majority of subjects with relatives that were victims of Huntington’s disease would not want to be tested for Huntington’s disease (Munson, 2004).

But, predictive testing for late-onset conditions also has the potential to benefit. Proponents of testing, despite an in-ability to treat, posit that knowing about a future disease al-lows one to plan ahead. Moreover, in an Australian study of young persons having undergone testing for Huntington’s (Duncan, Gillam et al., 2007), researchers discovered that testing sometimes alleviated concerns. Numerous subjects had been living risky lifestyles, taking drugs or having little concern for life prior to testing. These subjects, based on fa-milial history, were under the assumption that they were go-ing to develop Huntington’s in adulthood. While a positive test result had little change in lifestyle, a negative test re-sult relieved uncertainty, and positive lifestyle changes (e.g. performing better in school) resulted after testing. These specific indications, though, are quite atypical, and apply to very specific situations in which patients are under false as-sumptions. Because testing often has greater negative impli-cations, testing of untreatable, late-onset conditions should generally be limited. This recommendation is in accord with the position of the American Academy of Pediatrics (Nel-son, Botkjin et al., 2001).

A requirement for genetic testing should be follow-up. If individuals decide to undergo testing or if states are to screen newborns for disease, follow-up treatment or guid-ance should exist. Simply discovering you are prone to dis-ease or simply notifying a child’s parents of their child’s impending doom may cause more harm than benefit. On utilitarian grounds, then, the testing is ethically contentious and should not occur.

Genetic counseling aims to inform patients of the psycho-logical and social implications of genetic testing, and provide support for at-risk patients. While physicians administer testing, genetic counselors are separate health professionals that provide advice and counseling to patients, concerning potential benefits and detriments of test results. According to the U.S. Department of Labor Statistics, genetic counsel-ing as a profession is expected to grow much faster than the average for all occupations through 2016 (Statistics, 2008-2009). Physicians administering tests should educate them-selves sufficiently if they are to recommend or advise genetic testing and genetic counseling is recommended in cases of uncertainty.

Who Decides?

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Voluntary, comprehensive, informed consent in the pro-cess of genetic testing is often controversial, especially in the case of testing minors. The question of when a minor is old enough to provide informed consent applies here. Paternal-istic themes also arise in clinical decision making on wheth-er or not to undergo testing. Some suggest that parents of-ten have the best interest of their children in mind—that parents have the ability to make paternalistic decisions that are best for the child, decisions that the minor would agree with in his/her adult years—and parents should therefore be considered more in making the decision, despite potential psychosocial harms to the child (Malpas, 2008). Others ar-gue that testing and revealing a positive result may impede on that child’s future autonomy. The better choice, is to post-pone testing until the child is an adult, thereby protecting the child’s right to an open future by preserving into adult-hood his/her own choice to decide whether life is better lived with or without the genetic knowledge (Davis, 1997). PKU and similar diseases dependent on parental practices in early childhood may be an exception.

Post-Test ConcernsFears of discrimination based on genetic information are

common, including fear of being fired by an employer or having insurance hikes based on positive genetic tests. In a study of U.S. women with familial risk of having the breast cancer associated BRCA1 gene, 55% cited fear of life insur-ance discrimination as a moderate or important factor in their testing decision (Armstrong, Weber et al., 2003). Oth-er studies have indicated that fear of genetic discrimination has limited patients’ willingness to follow recommendations by their health care providers to undergo testing or have re-sults included in their medical records (Hudson, 2007). The prevalent fear of discrimination spurred the recent human rights driven passing of the U.S. Genetic Non-Discrimina-tion Act (GINA) in May of 2008. GINA is the first federal law that protects consumers from discrimination by health insurers and employers on the basis of genetic information (Hudson, Holohan et al., 2008). Numerous other legisla-tive actions have been taken around the world to minimize discrimination based on genetic information (Lemmens, 2000).

The issues are often not limited to individual patients. Newborn screening may indirectly reveal genetic informa-tion about parents or siblings. Because of the familial nature of genetics, relatives may share the same genetic diagnoses of disease susceptibility. Confidentiality issues may arise in genetic testing scenarios. Whether or not there is a duty to notify family members of test results is controversial.

Macro-Scale IssuesGenetic testing is considered a component of preventa-

tive medicine, as opposed to reparative medicine. If genetic testing provides benefits to those undergoing testing, the proper allocation of scare resources in the arena of social justice becomes an issue. Distribution of preventive public health measures, like vaccines, has been an issue in the past and as the prevalence of genetic testing increases distribu-

tion issues are inevitable. Screening a large population for disease using a genetic test

may be a positive preventive health measure, but may also only indicate a few individuals with disease, while burdening society with having to pay. In the end, screening may or may not be cost-effective. Large-population screening is often extremely expensive and impractical. For example, screening the entire U.S. population for the breast cancer BRCA1 and BRCA2 genes is an obvious waste of resources. Instead, excessive-risk populations should be screened to maximize potential benefits. With the breast cancer associated genes, screening of women with familial history of breast cancer would be more cost-ef-fective. The criteria for screening programs should include: a clear indication of benefit to patients being tested, a confirm-able diagnosis, application of necessary follow-up treatment, a simple reliable testing method, and a target condition frequent and severe enough to be a public health concern (Andrews, Ful-larton et al., 1994).

Reimbursement policies and who should carry the burden of costs are also pivotal issues. While newborn screening is most often covered, insurance companies currently reim-burse for only a select few genetic tests. Policy changes are likely to continue to evolve in the insurance sector as genetic information becomes more prevalent in clinical settings.

Genetic screening resulting in prenatal diagnosis and em-bryo selection has the prospect of avoiding horrible disease onsets. Over long-term selection, genetic defects can be minimized or even eradicated from the gene pool. This re-duction or elimination is laudable for its potential to reduce suffering, but the social selection of preferable genotypes leads to a eugenics debate. While eliminating severely debil-itating conditions like Tay-Sachs is less controversial, efforts to reduce or eliminate less severe conditions, like diabetes, may create undesirable social stigmas. Leon Kass argues that the practice of prenatal diagnosis-based abortion threatens our human commitment to the basic moral principle that each person, despite physical or mental handicaps, is inher-ently equal (Kass, 1973). Moreover, he contends that unde-sirable conditions are often determined vaguely, on arbitrary social standards.

OversightGenetic tests are increasingly becoming available online

through private companies. These “direct-to-consumer” tests are available for purchase directly by patients/consumers without consent of a physician or without ever speaking with a health care practitioner. But purchasing genetic tests online without a physician’s recommendation sidesteps the doctor–patient re-lationship and circumvents meaningful, face-to-face genetic counseling (Roche and Annas, 2006). Not only does this have psychosocial implications, especially if false positives occur, but the commercialization of genetic tests inevitably leads to excessive and unnecessary testing, which will increase health care expenditures. Use of direct-to-consumer tests should be discouraged and testing should only occur with the recom-mendation of a health care professional.

Along with the regulation of genetic testing, many states

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now regulate the proper use of genetic information, but sufficient oversight is rarely present. If personally identifi-able genetic information is stored, unauthorized use or ac-cess—invasions of genetic privacy—are possible (Roche and Annas, 2006). DNA samples used in genetic testing can be entered into databases for various uses. When genetic tests or DNA sequencing are occurring, patients should be care-ful to determine what exactly will happen to their DNA af-ter testing, whether it will be destroyed or kept for research or other purposes. One’s DNA is comparable to a medical record, and considering the regulations in place for privacy of medical records, similar restrictions should be exist for genetic information. Greater federal and state regulation of genetic testing and privacy are necessary.

In April of 2008, United States President George W. Bush signed the “Newborn Screening Saves Lives Act of 2007” into law. Under this bill, the DNA of all US citizens will eventually be housed in government owned genomic biobanks and considered governmental property for use in research. The collection and maintenance of population-wide genetic databases raises poignant social and ethical concerns. While genetic databases hold great promise for research endeavors, critics argue that these genetic databases are unjustified and unethical, as accessing intensely personal genetic information without consent can be considered an invasion of privacy, violating individual rights. Others la-bel the passing of this bill as an erosion of medical privacy (Brase, 2008).

The Secretary’s Advisory Committee on Genetics, Health, and Society (SACGHS), created to advise the Secretary of Health and Human Services on policy issues, recently rec-ognized the oversight of genetic testing and its outcomes as a high priority issue, with current gaps (SACGHS, 2008). Legislative action should regulate the proper development and use of tests, protect patients, and ensure that testing

measures increase the quality of health care.

ConclusionThere are challenging issues amidst the integration of ge-

netic testing into medicine and health care. The past century has shown extraordinary scientific advances in genetic in-formation, understanding, and research. But, with these ad-vances comes a pressing need for regulation, oversight, and ethical analysis. Future domestic and international health care delivery and reimbursement, along with expenditures, may be influenced by the development, regulation, and use of genetic information, both in and out of genetic databases. Ethical debate should occur in advance or at least in parallel with advancing science to ensure proper legislative action.

The repercussions of genetic testing are life-long, and results not only affect individuals, but entire families. Whenever pos-sible, parents should try to wait until children are able to make voluntary, informed, and understanding decisions about wheth-er they want to undergo genetic testing. Testing of untreatable adult-onset conditions should be avoided if no practical benefit is expected. Direct-to-consumer tests should also be avoided, and decisions to undergo testing should always occur under the guidance of health care professionals. Criteria should be estab-lished prior to screening endeavors and follow-up to testing should always be pursued. Furthermore, health care practitio-ners should be well-informed on current genetic testing issues in order to best treat their patients. Regulation on the state and federal levels is needed to ensure that genetic testing endeavors concur with the goal of medicine and health care—improve-ment of health and well-being. Benjamin Schanker is a Senior at Boston University majoring in Biology, Human Physiology, and Health Law, Bioethics, Human RightsProf. Michael Grodin is the faculty sponsor for this submission. He is a Professor of Bioethics, Human Rights and Psychiatry in the Department of Health Law, Bioethics, and Human Rights at Boston University.Address: 715 Albany St., Boston, MA, 02118Email: grodin@bu.edu

References

1.Andrews, L., J. Fullarton, et al. (1994). Assessing Genetic Risks: Impli-cations for Health and Social Policy. Washington, DC, National Academy Press.2. Armstrong, K., B. Weber, et al. (2003). “Life insurance and breast cancer risk assessment: adverse selection, genetic testing decisions, and discrimination.” Am J Med Genet A 120A(3): 359-64.3. Bertina, R. M. (1997). “Factor V Leiden and other coagulation factor mutations affecting thrombotic risk.” Clin Chem 43(9): 1678-83.4. Brase, T. (2008). A Critical Analysis of the Implications for Genetic Privacy and Consent Rights in Congress’ Proposed ‘Newborn Screening Saves Lives Act of 2007’, Citizen’s Council on Health Care.5. Davis, D. S. (1997). “Genetic dilemmas and the child’s right to an open future.” Rutgers Law J 28: 549-92.6. Duncan, R. E., L. Gillam, et al. (2007). “”Holding your breath”: inter-views with young people who have undergone predictive genetic testing for Huntington disease.” Am J Med Genet A 143A(17): 1984-9.7. Hubbard, R. and R. C. Lewontin (1996). “Pitfalls of genetic testing.” N Engl J Med 334(18): 1192-4.8. Hudson, K. L. (2007). “Prohibiting genetic discrimination.” N Engl J Med 356(20): 2021-3.9. Hudson, K. L., M. K. Holohan, et al. (2008). “Keeping pace with the times--the Genetic Information Nondiscrimination Act of 2008.” N Engl J Med 358(25): 2661-3.10. Kass, L. R. (1973). Implications of Prenatal Diagnosis for the Human Right to Life. Ethical Issues in Human Genetics: Genetic Counseling ad

teh Use of Genetic Knowledge. e. a. Bruce Hilton. New York, Plenum: 186-199.11. Kaye, C. I., F. Accurso, et al. (2006). “Newborn screening fact sheets.” Pediatrics 118(3): e934-63.12. Lemmens, T. (2000). “Selective justice, genetic discrimination, and insurance: should we single out genes in our laws?” McGill Law J 45(2): 347-412.13. Malpas, P. J. (2008). “Predictive genetic testing of children for adult-onset diseases and psychological harm.” J Med Ethics 34(4): 275-8.National Cancer Institute. (2002). Fact Sheet: “Genetic Testing for BRCA1 and BRCA2: It’s Your Choice.” U.S National Institutes of Health: 1-11 14. Nelson, R. M., J. R. Botkjin, et al. (2001). “Ethical issues with genetic testing in pediatrics.” Pediatrics 107(6): 1451-5.15. Purdy, L. M. (1995). Genetics and Reproductive Risk: Can Having Children Be Immoral. Intervention and Reflection: Basic Issues in Medi-cal Ethics. R. Munson. California, Thomson Wadsworth.16. Robertson, S. and J. Savulescu (2001). “Is there a case in favour of predictive genetic testing in young children?” Bioethics 15(1): 26-49.17. Roche, P. A. and G. J. Annas (2006). “DNA testing, banking, and genetic privacy.” N Engl J Med 355(6): 545-6.18. SACGHS (2008). U.S. System of Oversight of Genetic Testing: A Response to the Charge of the Secretary of Health and Human Services; Report of the Secretary’s Advisory Committee on Genetics, Health, and Society. Washington, DC.19. Statistics, Bureau of Labor. (2008-2009). Occupational Outlook Handbook. U.S. Department of Labor.

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Humanitarianism and Human Rights: Tensions in Médecins sans Frontières

“Inescapably, there is much more to medicine than the practice of medicine;” wrote Elliot Leyton in Touched by Fire: Doctors Without Borders in a Third World Crisis (1998, p. 125). His statement hints at the dilemmas faced by emergency medical organizations such as Médecins sans Frontierès (Doctors Without Borders, or MSF). One of the world’s most respected medical humanitarian organizations, MSF follows the ethic underlying the Hippocratic Oath, striving for the physical well-being of each of its patients. It also follows the humanitarian ethic of defining its patients as inclusively as possible. Yet death and disease in develop-ing countries are caused as much by political strife as by natural disasters, and all humanitarian action has some po-litical effect. Humanitarian organizations must take into ac-count the political causes and implications of the situations in which they intervene or risk becoming morally bankrupt. The discourse and tools that might seem most appropriate for these organizations are those of human rights, which characterize situations according to the rights violations ob-served and invoke political mechanisms for righting them. Yet because states are supposed to guarantee their citizens’ rights, this approach necessarily criticizes the home gov-ernment, Therefore, when MSF denounces a government, it must resign itself to possibly being thrown out of that country, no longer able to offer medical care to people who may need it and are dependent on political entities to take action.

MSF uses a human rights discourse at times to further its mission of providing basic care among the world’s most

underserved populations, but it does so with reluctance. As both its history and written reports show, MSF’s concern with human rights does not stem from the concepts enu-merated in the Universal Declaration of Human Rights (UDHR); on the contrary, as former MSF president James Orbinski said, MSF strives “to enable individuals to regain their rights and dignity as human beings,” (Bortolotti, 2004 p. 276). MSF takes issue with human rights mostly when the rights perspective plays out in international politics, an arena that one must enter to use human rights as a tool for alleviating human suffering. The organization approaches human rights tools by looking at the ways advocacy and human rights rhetoric can make their humanitarian efforts more effective. In an effort to remain effective, MSF uses a human rights framework in some already politicized situa-tions, but for the most restricts itself to a cohesive humani-tarian ethic and rhetoric complemented with humanitarian-centered witness-bearing.

Human Rights and Humanitarian AidAs a tool of those who fight to stop human suffering, the

human rights framework draws its force from the formal ac-ceptance of the member states of the United Nations. Signato-ries to the Universal Declaration of Human Rights (UDHR), member states have a responsibility to ensure that violations of human rights are not systematically perpetrated by members of government as a result of state policies or by unaffiliated groups within their territory. Even when states may be com-mitting or allowing violations of human rights, their signa-tures on the UDHR – and on the legally binding International

Article

One of the worldʼs most respected medical humanitarian organizations, Médecins Sans Frontières (Doctors Without Borders, MSF) has a complex relationship with the use of human rights discourse, one that has evolved throughout its history. Accusations of human rights abuses heavily implicate states, both as the parties responsible for violations and those charged with the duty of international intervention to stop these violations. MSF tries to remain relatively neutral in order to relieve the suffering of those in need more effectively; it prefers using humanitarian discourse in order to avoid the national and international implications in accusations of human rights abuses and is vocal about separating humanitarianism from other forms of action. However, while many hu-manitarian organizations keep to a strict policy of neutrality, MSF does sometimes use human rights discourse and counts témoinage – the witnessing and reporting of suffering – as a central component of its mission. This paper analyzes several facets of MSFʼs rhetoric and actions to delve into the complexities of applying a human rights framework to the work of humanitarian groups. It concludes that relying too heavily on human rights discourse would weaken humanitarian groups, but that the most intelligent groups – such as MSF – use a pragmatic approach to blend human rights with humanitarianism and medical appeals to form a more robust framework for action. When they recognize that a situation can benefit significantly from political appeals in the vein of human rights, they will use human rights discourse to further their mission of relieving human suffering.

Laura Harris*

* UNIVERSITY OF VIRGINIA. 20 E LAWN, CHARLOTTESVILLE, VA 22903. LFH5D@VIRGINIA.EDU

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Covenants on Civil and Political and Economic, Social and Cultural Rights (ICCPR, ICESCR) – provide a platform for accountability. The “obligation of States under the Charter of the United Nations to promote universal respect for, and obser-vance of, human rights and freedoms,” as stated in the ICCPR, holds all member states to an international standard (Office of the High Commissioner, accessed 2008).

Groups that seek to defend human rights, such as Human Rights Watch and Amnesty International, monitor adher-ence to human rights-related treaties and document abuses of human rights. When they find violations, they lobby gov-ernments and international organizations to acknowledge and act upon them. Political advocacy forms a central part of their mission, because through it they can use the power of human rights to remind political agents of their responsibil-ity towards all human beings.

However, human rights’ place within the international politi-cal/legal system is part of what makes it so unattractive to many humanitarian organizations. This international political system often sacrifices certain populations in order to achieve goals of stability, freedom, or other valued public goods. MSF and many other humanitarian actors see this ‘principle of sacrifice’ in almost all politics: both in governments who commit egre-gious human rights abuses and in many western democracies that use humanitarian aid NGOs to support humanitarian/military intervention only when it is in their national interests. These same state actors are human rights’ strongest enforce-ment mechanism, whether the violator state itself is shamed into action or other states must stop the violations through diplomacy, sanctions, or even force. Although humanitarian law is also vulnerable to the weaknesses of international law, humanitarian work is essentially “one human being seeing the humanity in another person...an innate response of wanting to help,” according to one MSF employee (Doctors Without Borders “Programs in Darfur”, accessed 2007). Humanitarian law is mostly concerned with creating a space for these orga-nizations in conflict situations and making sure that they act within prescribed limits. Correspondingly, humanitarian dis-course frames situations in terms of human need and suffering and calls upon individuals and groups to respond to the relief of this suffering without necessarily implicating governments. Human rights’ high degree of connectedness with the political ‘sacrificial order’ is in tension with the humanitarian organiza-tions’ “radical decision to help the people society has decided to sacrifice,” in the words of Jean-Hervé Bradol, current presi-dent of MSF (Weissman, 2004, p. 225). This is especially true if humanitarian actors believe that human rights’ focus on the individual is not enough to change the larger political order.

Human rights and humanitarianism are both ethical ap-peals to relieve human suffering; they are not intrinsically dichotomous and their combination can at times make organizations more effective. MSF has tried seriously to balance medical aid and speaking out, so its usage (or lack thereof ) of human rights vocabulary reveals much about humanitarian organizations’ intersection with the human rights framework.

Medecins sans Frontiereʼs History and WorkEven before MSF’s formation, its future founders struggled

over principles of political neutrality. In 1968, a group of French doctors volunteering at a Red Cross camp in the break-away Nigerian state of Biafra could not remain silent when they saw that the Nigerian government’s supply cut-offs were causing widespread starvation (Bortolotti, 2004, p. 43). MSF’s founder Bernard Kouchner would later state that in Biafra, “to give medical care and let children keep quiet, to give medi-cal care and let children die, for me it was clearly complicity,” (Bortolotti, 2004, p. 43). Volunteers led by Kouchner decided to violate the Red Cross’ principle of neutrality and denounced the Nigerian government.

Kouchner and other former Red Cross volunteers joined forces with staff from the Parisian medical journal Tonus who had published calls for doctors to help victims of natural di-sasters, founding Médecins sans Frontières in 1971. Kouchner and other doctors who had experienced the atrocities in Biafra wanted the freedom to speak out against governments. Other-wise, they reasoned, why had they left the Red Cross? But Ray-mond Borel, the editor of Tonus, argued that no government would want to open its borders to an organization that might embarrass them, and speaking out would undermine MSF’s ef-fectiveness over time, (Bortolotti, 2004, p. 48).

Eventually, Borel’s side won. The fourth article of the orig-inal constitution read,

They [MSF volunteers] maintain professional discretion and refrain from making judgments or expressing public opinions – favorable or hostile – with regard to the events, forces, and leaders who accept their aid,” (Bortolotti, 2004 p. 48).

In 1977 Kouchner’s colleagues had this article removed (Bortolotti, 2004, p. 52); the current charter’s second article represents a much more politically savvy MSF:

Médecins Sans Frontières observes neutrality and impartiality in the name of universal medical ethics and the right to humanitar-ian assistance and claims full and unhindered freedom in the exer-cise of its functions.” (Doctors Without Borders “What is Doctors Without Borders”, Accessed 2007)

This statement retains emphasis on neutrality but places it in the service of universal medical ethics and the right to humanitarian assistance. In addition, the first version gave agency to the governments who ‘accepted’ MSF’s aid for their citizens, while the current one gives MSF agency and calls humanitarian assistance a right. The current charter has been molded by over 30 years of experience in the field and in strategic administration.

As the organization faced subsequent humanitarian crises, tensions grew between those who wanted to pursue exposi-tory, attention grabbing humanitarian campaigns, such as Kouchner, and a younger generation of doctors who wanted to focus less on coverage of their work. In 1978, Kouchner announced a plan to operate a rescue ship and television crews in the China Sea in order to care for and film some of the thousands of ‘boat people’ fleeing Vietnam. Younger doctors thought that the project was futile, and voted to reject it (Bortolotti, 2004, p. 56). In doing so, they pushed Kouchner and his allies out of MSF. The immediate cause of Kouchner’s departure was his emphasis on media atten-tion, but his strong commitment to human rights advocacy had the similar potential effect of concentrating too much on the response of external parties, such as governments, as

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opposed to the care of the victims. In rejecting Kouchner’s boat project, MSF set limits on the impulse to speak out, which had brought its members together.

However, the principle of témoinage or bearing witness – speaking out publicly against human suffering and sometimes against the groups that caused this suffering – remained one of the main principles of MSF. Bearing witness can encompass human rights discourse but is more flexible in the vocabulary it can invoke and the actions it can call for. Despite its absence in MSF’s formal charter, bearing witness is mentioned throughout the organization’s website, and ‘soigner et témoigner’ (care and bear witness) is one of MSF’s primary slogans. Public aware-ness furthers MSF’s mission, spurring funding for missions or grassroots campaigns that will hopefully goad political players to action. Moreover, MSF feels a strong responsibility to speak out because it is often the first or only internationally known and reputed humanitarian organization in a crisis or conflict situation. MSF annually publishes an analysis of the ten most underreported humanitarian crises of that year (Doctors With-out Borders, Top 10, Accessed 2007).

This sort of exposé need not criticize governments as a human rights approach would, but MSF does specifically de-nounce governments when it believes it to be necessary. In 1980, for example, MSF criticized Pol Pot’s regime in Cambodia. The French section of MSF criticized Colonel Mengitsu’s regime in Ethiopia in 1985, calling attention to the government’s forced displacement of civilians and diversion of aid from its intended beneficiaries, and it was kicked out shortly thereafter (Borto-lotti, 2004, p. 14). Subsequently the European Community and the United States insisted that the deportations had to stop if Ethiopia were to receive more international aid.

Yet even when MSF does speak out against gov-ernments, there is often no mention of human rights. In December 2007, MSF denounced the Angolan Govern-ment for its army’s treatment of Congolese refugees. An ex-cerpt of their press release reads “MSF teams...are providing care to victims of sexual violence. They have also collected 100 testimonies exposing rape and physical abuse widely perpetrated by the Anglolan military,” (Doctors Without Borders, “Angolan Government”, accessed 2008). MSF not only passively bears witness, but spends time collecting for-mal evidence of abuses as many human rights groups do. Yet although the press release mentions physical trauma and other “grave abuses”, it does not characterize them as hu-man rights violations (Doctors Without Borders, “Angolan Government,” 2008). Even when it seems as though human rights vocabulary would only strengthen its case, MSF pre-fers to use humanitarian rhetoric if a humanitarian frame-work will do the job.

Confronted with the genocide in Rwanda in 1994, MSF called vigorously for armed intervention, the only time in its history that it has done so (Bortolotti, 2004, p. 264). MSF’s call was so emphatic because in the practice of genocide, human mutilation and death are not merely byproducts of a political conflict, but its main means and end. To remain silent about this sort of conflict it is to violate the spirit of humanitarian-ism, if not the letter of many humanitarian charters. MSF took up the slogan “you can’t stop a genocide with doctors” at press conferences; its administration reasoned that the most effective

action it could take was to draw as much attention as possible to the killings, because medicine was such small part of what was needed to mitigate the damage. (Bortolotti, 2004, p. 264). MSF’s advocacy was even more critical for the Rwandan geno-cide because international inaction was in part based on public leaders’ pretensions of ignorance about the situation.

MSF released a report specifically about Rwandan human rights violations (Doctors Without Borders, “Breaking The Cycle” 1994). It also used the more legally stringent framework of genocide to characterize its response and discourse, which stems from the same UN tradition as human rights. When it concludes that humanitarian action simply is not enough, MSF does not shy away from using these more political frameworks to “stretch its mandate,” (Bortolotti, 2004, p. 243).

In 1999 MSF received the Nobel Peace Prize, not only for caring for desperate populations, but also for advocating for them internationally. James Orbinski, then president of MSF, used his acceptance speech to lay out MSF’s mission in a public forum after struggling unsuccessfully with other MSF admin-istrators to agree on a formal mission statement (Bortolotti, 2004, p. 161). Yet first he called for the Russian government to stop bombing civilians in Chechnya; whatever MSF’s con-cerns with neutrality, they did not stop the organization from speaking on behalf of those in need of humanitarian aid (Nobel Lecture, Accessed 2007). Orbinski stated that “silence has long been confused with neutrality...from its beginning, MSF was created in opposition to this assumption,” but also that “hu-manitarianism is not a tool to end war or create peace. It is a citizen’s response to political failure,” (Bortolotti, 2004, p. 276-277).

Orbinski contrasted humanitarian action with political ac-tion, which encompasses human rights advocacy as well as security measures (Nobel Lecture, Accessed 2007). It makes sense for MSF to try to distinguish between frameworks of action as clearly as possible given Orbinski’s concern with the “limits and ambiguities of humanitarian action” and how other organizations, both humanitarian and political, seem to want to blur the two, for example, when states use food distribution as a tool for statecraft (Nobel Lecture, Accessed 2007). The reaction to ambiguity is probably another reason why MSF does not often use human rights vocabulary even when it would fit a situation well.

Earlier that year, three employees of the humanitarian organization CARE were arrested because they had been helping the Canadian government recruit NATO ceasefire monitors during the war in Kosovo (Burton, 2000). This situation may well have spurred some of Orbinski’s remarks; other MSF leaders had sharply criticized CARE for under-mining the effectiveness of the entire aid community. The importance of maintaining a reputation of impartiality and detachment is paramount for the humanitarian community. This concern for neutrality is why the Red Cross has chosen to maintain its distance from all human rights discourse and does not condemn governments in situations such as Biafra, even though this choice means that sometimes it remains silent about important political causes of suffering. CARE overstepped the limits of humanitarian aid by helping mili-tary efforts, even those it thought it was doing an ultimate

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good. MSF by contrast did not accept donations from NATO member governments during the Kosovo conflict so as to ensure impartiality. MSF strikes a fragile balance be-tween speaking out and direct service and takes much more care to stay within the bounds of humanitarian effectiveness even as it refuses to remain silent.

MSF administrators reportedly worried that the recognition of The Nobel Prize created the expectation that MSF would comment on a variety of international issues, endangering its neutrality (Bortolotti, 2004, p. 164). Yet MSF used the No-bel Prize money to start an advocacy campaign: Access to Es-sential Medicines. Seeking to lower pharmaceutical prices and further research on diseases of poverty, this campaign involves lawyers and lobbyists as well as medical professionals (Doctors Without Borders, Campaign for Access, accessed 2007). It re-quires MSF to engage with World Trade Organization agree-ments such as Trade Related Aspects of Intellectual Property Rights, an agreement most often buffeted with competing, internationally accepted claims of patient and human rights. MSF follows suit, arguing that “access to essential medicines is...a critical component of the human right to health,” (Doc-tors Without Borders, Statement by Médicins sans Frontières, accessed 2007)

More recently, MSF has been vocal about the human rights of refugees in Europe; since states are in charge of overseeing rights, non-citizens residents’ rights are often ignored. The call for humanitarian aid is most often directed at the rela-tively wealthy to help poor countries; people might not be as moved to help the poor in rich countries based on a human-itarian appeal. In addition, European countries are among the strongest supporters of the human rights framework, so turning this discourse on them could provoke a substan-tial response. The plight of refugees is another situation in which the discourse of human rights seems particularly ap-propriate, and MSF has responded by demanding “that Eu-ropean countries receive asylum seekers and respect all their relevant rights as well as those of irregular migrants—not least their right to health care,” (Doctors Without Borders, Statement by Médicins sans Frontières (MSF) on TRIPS and Affordable Medicines, accessed 2007).

Thus far, all discussion of MSF has centered on the orga-nization’s top administrators, who must formulate the stra-tegic interaction between MSF and the rest of the world. Although most high-level administrators have spent time on the ground, they are usually also “philosophers with a keen understanding of politics,” (Bortolotti, 2004, p. 160). Yet MSF’s core is the volunteers on the ground, who may have little political savvy. They are the ones witnessing hu-man rights violations in their most horrifying detail, and who may, like Kouchner and his fellow volunteers at the Red Cross, want to speak out against these violations. Volunteers can afford to get tied up in the details of their specific situ-ation when making plans, with less concern for consistent frameworks for efficient action on a large scale. Sometimes they do not want to leave a crisis voluntarily when they can provide any aid; many volunteers, for example, felt that leav-ing Rwanda was a betrayal (Bortolotti, 2004, p. 160).

When volunteers refer to human rights or humanitarian

aid, the terms are often lumped together. An MSF coordi-nator said to volunteers in Rwanda, “Revenge killings are inevitable...you’ll be the people closest to them, we need your witnessing. We have a responsibility for human rights” to tell the world (Doctors Without Borders, Rights of Refu-gees, Accessed 2007). Such a comment might not have been included in an official press report, or it would have been turned into the ‘humanitarian responsibility’ to bear wit-ness.

Yet if volunteers speak out too aggressively about human rights, the negative effects can parallel those at a larger level. An MSF employee described a head of a mission in Colombia as a “stupid cowboy” because he wanted to tell the media about the human rights violations he had witnessed. (In the early days, MSFers were called the cowboys of humanitarian aid for their ‘risky’ strategy of speaking out – but not stupid cowboys). “The local staff turned white and said ‘If you do that they’re go-ing to kill my family tomorrow,’” (Bortolotti, 2004, p. 242).

MSF employs human rights experts as liaisons between the strategic level and the volunteer level to make sure that the organization stays cohesive. The job description states that human rights experts can be “deployed to gather in-terviews and conduct analysis for MSF’s advocacy reports and initiatives” (National Geographic, Life in the Field, Ac-cessed 2007). As one human rights expert noted, a large part of the job is to train volunteers in international law and to give advice about “translating the anger and indignation...into messages and tools that can be used to try to show what’s happening...sometimes they need advice on what’s the best way to deal with those situations,” (National Geo-graphic, Life in the Field, Accessed 2007). The job seems as much about directing and refining témoinage at all levels into acceptable standards for humanitarian organizations as it is about collecting evidence of human rights violations.

MSF has grown throughout its 36 years of existence, and its strategies of relieving suffering have been tested by many of the issues it has faced. The organization has blos-somed from 13 doctors to more than 4,700 volunteer as-signments spread among 70 countries each year (Doctors Without Borders, What is Doctors Without Borders?, Ac-cessed 2007). Yet MSF has stayed small enough to be inde-pendent of funding sources besides a concerned public: 89 percent of its funds come from private donors – uniquely high among humanitarian organizations (Doctors With-out Borders, What is Doctors Without Borders?, Accessed 2007). Whenever MSF does speak out, the actions it takes and the rhetoric it uses are based on what it thinks will be truly effective.

ConclusionAn underlying question of this paper has been: to the extent

that humanitarianism is effective, in what ways can a human rights model of advocacy and human rights vocabulary make it more effective? This question has informed MSF’s struggles in deciding which actions to take and in which frameworks to situate those actions. Being effective can sometimes mean making exceptions and invoking a human rights framework to increase the efficacy of the medical care. It can also mean

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not using this human rights framework when doing so might seem perfectly warranted at first glance. Action related to hu-man suffering is more like a spectrum than a dichotomy, and different methods can sometimes complement each other; the potential for advocacy through témoinage allows MSF, among many other things, to remain alive to the causes of the situa-tions it tries to improve.

Yet MSF has attempted to draw clearer distinctions between humanitarianism and other frameworks in its rhetoric and ac-tions, because another element of effectiveness is expressing its actions according to a consistent framework. It prefers to speak about ‘human needs’ rather than ‘human rights,’ back-ing its witnessing with medical and humanitarian authorities (Doctors Without Borders, 2007). And MSF’s medical char-acter helps to reinforce the organization’s neutrality and gives technical expertise to its mission. Joelle Tanguy, MSF-USA’s executive director in 1997, stated at a UN conference that “the key message that our teams have learned, if not the intellectual framework that Médecins Sans Frontières started with, is that effective humanitarian action demands an acute awareness of human rights and a vigilant sensitivity to the interaction of the humanitarian agenda with political, military, legal and econom-ic arenas,” (1997, accessed 2008). Yet MSF has used this knowl-edge, in most cases, to commit to the humanitarian framework all the more strongly. Today, MSFers often speak out in an ef-fort to clarify and limit its humanitarianism in order to make the framework on which they rely strong enough to allow them to pursue their mission.

According to Christian Chapitier, the director general of MSF Geneva,

The current thinking ... is that humanitarian action should form an integral part of a “coherent system” – an integrated humanitarian system. But integrated into what? Integrated into policy in the same way as are the use of force, economic development or even justice in a global quest for consistency?” (Doctors Without Borders, Rights of Refugees, Accessed 2007).

Ultimately, effectiveness for humanitarian action means some level of isolation and even of subversion towards systems of power, as Bradol stated (Weissman, 2004, p. 8). Humanitarian groups bear witness to the violence and deprivation in refu-gee camps that are run by international security forces and le-gal systems, and to the casualties of wars fought for liberation (Weissman, 2004, p. 7). They fight against the entire sacrificial political order, which means not just revealing the very worst among human rights offenders but refusing to rely on this sys-tem for its solutions and going into the field themselves. But the most intelligent and sensitive humanitarian organizations, such as MSF, recognize the power of human rights discourse and, when the conditions are right, will stretch their mandate and use it as a tool to further their mission of relieving human suffering.

Laura Harris is a Senior at the University of Virginia majoring in Biology and Politi-cal & Social Thought.

Prof. John Arras is the faculty sponsor for this submission. He is the Porterfield Professor of Bioethics in the Department of Philosophy at the University of Virginia.Address: 1515 Stoney Creek Dr., Charlottesville, VA, 22902Email: jda3a@virginia.edu

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References 1. Bortolotti, Dan. Hope In Hell: Inside the World of Doctors Without Borders. Buffalo: Firefly Books Ltd, 2004. 2. Brauman, Rony. “Questioning Health and Human Rights.” Carnegie Council. http://www.cceia.org/resources/publications/dialogue/2_06/ar-ticles/643.html (Nov 9, 2007)3. Burton, Bob. “Aid worker ‘spy’ undermines impartiality.” Asia Times Online, February 18 2000. http://www.atimes.com/oceania/BB10Ah01.html. ( Jan 3, 2009)4. Captier, Christian “MSF’s principles and identity - The chal-lenges ahead” http://www.msf.org/msfinternational/invoke.cfm?objectid=F75AB4F5-E018-0C72-093A3A517D56EB33&component=toolkit.article&method=full_html (Dec 9, 2007)5. Doctors Without Borders: “Angolan Government must put an end to the abuses committed by its army against Congolese migrants during their expulsion from the country” http://www.doctorswithoutborders.org/pr/2007/12-05-2007.cfm (Dec 9, 2007)6. Doctors Without Borders: “Breaking the Cycle: Calls for Action in the Rwandese Refugee Camps in Tanzania and Zaire” November 10, 1994 http://www.doctorswithoutborders.org/publications/reports/before1999/breaking_1994.cfm (Dec 9, 2007)7. Doctors Without Borders: “Campaign for Access to Essential Medi-cines” www.accessmed-msf.org/ (Dec 9, 2007)8. Doctors Without Borders: “The MSF Charter” http://www.doctor-swithoutborders.org/aboutus/charter.cfm (Dec 9, 2007)9. Doctors Without Borders: “Programs in Darfur” http://www.doctor-swithoutborders.org/news/voices/2007/07-2007_darfur.cfm (Nov 9, 2007)10. Doctors Without Borders: Statement by Médicins sans Frontières (MSF) on TRIPS and Affordable Medicines. http://www.accessmed-msf.org/media-room/press-releases/press-release-detail/article/statement-by-medecins-sans-frontieres-msf-on-trips-and-affordable-medicines-1/ (Dec 9, 2007)11. Doctors Without Borders “Top 10 Underreported Humanitarian Crises of 2006” http://www.doctorswithoutborders.org/publications/re-ports/2007/top10_2006.htm (Nov 9, 2007)12. Doctors Without Borders: “Rights of Refugees: a Call to Govern-

ments” http://www.doctorswithoutborders.org/publications/ar/i2001/pro-tection.cfm (Nov 9, 2007)13. Doctors Without Borders: “What is Doctors Without Borders/Mé-decins Sans Frontières?” http://www.doctorswithoutborders.org/aboutus/ (Dec 9, 2007)14. Doctors Without Borders: “When Does MSF Speak Out?” Alert Spring 2001.http://www.doctorswithoutborders.org/publications/alert/2001/spring/when.cfm (Dec 9, 2007)15. Leyton, Elliott. Touched by Fire: Doctors Without Borders in a Third World Crisis. Toronto: McClelland & Stewart Inc, 1998.

National Geographic. “Doctors Without Borders: Life in the Field: Vol-unteer Profile.” http://www.doctorswithoutborders.org/ng/ep2/ep2_vol-unteer.html (Nov 9, 2007)16. The Nobel Prize Organization. “The Humanitarian Nobel Peace Prizes: Medical Aid and Human Rights.” http://nobelprize.org/nobel_prizes/peace/articles/stenersen/index.html (Nov 9, 2007)17. Orbinski, James, “Nobel Lecture on behalf of Médecins Sans Fron-tières” The Nobel Prize Organization. http://nobelprize.org/nobel_prizes/peace/laureates/1999/msf-lecture.html (Nov 9, 2007)18. Office of the High Commissioner of Human Rights: International Covenant on Civil and Political Rights. http://www.unhchr.ch/html/menu3/b/a_ccpr.htm (Dec 9, 2007)19. Tanguy, Joelle: “Responding to Complex Humanitarian Crises and Massive Abuses of Human Rights: Reflections On the Legal, Politi-cal and Humanitarian Framework” Delivered at the UN’s 51st Annual DPI/NGO Conference. http://www.doctorswithoutborders.org/publica-tions/speeches/before1999/jt_responding.cfm (Dec 9, 2007)20. van Schoor, Vanessa “Voices From the Field: Former head of mission in Darfur July 2007” http://www.doctorswithoutborders.org/news/voic-es/2007/07-2007_darfur.cfm (Dec 9, 2007)21. Weissman, Fabrice. ed. In the Shadow of “Just Wars” Violence, Poli-tics, and Humanitarian Action. Ithaca: Cornel University Press, 2004. A Médecins Sans Frontières Publication.

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End of Life Issues in Judaism and a Comparison to the American System

The exact nature and bases of Judaic bioethical perspec-tives are unknown to most Jews and gentiles alike. But, in fact, many of the earliest treatises on medical bioethics are derived from Jewish theologians and ethicists. Throughout history, prominent Judaic scholars have provided commen-tary on bioethical issues of relevant to their society and time period, deriving principles and laws on which to base opin-ions. Although some argue that ancient Talmudic law (code of Jewish law and ethics written between 200-500 C.E.) cannot relate to current medical practices, Orthodox Juda-ism maintains that there is, and must be, a mechanism to apply the ancient principles to current controversies. The seeming conflict of Judaic law with current American stan-dards is most evident in end of life decision-making.

Judaism is expected to hold archaic explanations for pain and disease, heavily rooted in spiritual beliefs (Steinberg, 2003). Without physical explanations, medicinal treatments are futile and the ill must rely on miracles. While Judaism recognizes physically manifested spiritual diseases, such as tzaraat (generally translated as leprosy, however, it is used in the bible as a metaphorical manifestation of spiritual as well as physical impurity), it urges, “al somchin al ha’nes (one should not rely on miracles) (Washofsky, 2001). The Torah (first five books of the Old Testament) and Talmud specifically reference anatomy, physiology, pathology, illness, wounds, etiologic causes, treatments, and prognoses. Fur-thermore, the Talmud prohibits Jews from living in cities

without physicians, maintaining that God authorizes heal-ing. Judaic sources have a foundation leading to modern scientific theory and are useful in managing related ethics.

Although bioethics is discussed in the Talmud and Torah, modern sages agree that the majority of statements no lon-ger apply at face value. As nature and medicine change, new halachot ( Jewish legal rulings) must be sought. Thus, the majority opinion asserts that only by using logic as applied to other medical practices, can one assess the current issues and institute new halachot (Steinberg, 2003). In making halachic (pertaining to halacha) decisions, Rabbis inspire debate and convey important philosophical principles un-derlying past scenarios (Steinberg, 2003). Pertinent top-ics include the value of life, view of life and death, and the implications of all of these within Judaic constructs. This background will facilitate better understanding of other halachot relating to end-of-life decisions such as organ do-nation, ventilator disconnection, nourishment refusal, and similar issues.

Judaic healthcare law originates from the Torah, declaring that pikuach nefesh, (the preservation of life) takes prece-dence over all laws aside from the prohibition to murder, commit adultery, and worship idols (Shulman, 1998). The Talmud continues stating that, “One may not set aside one person’s life for that of another (Rosner, The Beginning of Life).” The basic concept within these sources is that life is highly valued within Judaism. But do an unborn fetus,

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Many of the earliest treatises on medical bioethics were derived from Jewish theologians and ethicists. Although derived from similar sources, the traditional Jewish view of end of life issues is not always comparable with American judicial rulings. In this paper, American judicial rulings are incorporated primarily for clarification purposes, in order to highlight the differences between the two perspectives. Realizing that American bioethical decisions are not necessarily uniform, sometimes differing from state to state or between states and the federal government, this paper discusses some specific cases and majority views. The Judaic perspective on end of life care is based on the premisesof the preservation of human life, respect and awe for the human body, and sensitivity towards the apparent tribulations. Although the American system stresses the flexibility of autonomous moral decisions when determining legislation, there are also guidelines and restrictions based largely on legal precedence. Topics such as the instance of death, view on life, organ donation, abortion, and au-topsies are reviewed in light of both perspectives. For some issues, both systems agree such as on the instance of death, while in others, such as establishing a view on life, the two differ. In others still, there are varying degrees of agreement, such as the confluence in opinion between Jewish ethicists and most American judicial rulings strongly encouraging organ donation, though it is not obligatory in either case.

Jennifer Chevinsky*

* UNIVERSITY OF CONNECTICUT. 414D WILSON HALL, STORRS, CT 06269. JCHEVINSKY@GMAIL.COM

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healthy adult, and brain dead individual all have the same degree of life? In order to find the source of life, let us return to the Torah and Talmud.

Maimonides (Rabbi Moses son of Mammon (1135-1204) one of the greatest Torah scholars of all time, was a rabbi, physician, and philosopher in Spain, Morocco and Egypt during the Middle Ages. He was the preeminent medieval Jewish philosopher whose ideas also influenced the non-Jewish world) and Rabbi Yoseph Karo (1488-1575, one of the most significant leaders in Rabbinic Judaism and the author of the Shulchan Aruch, an authoritative work on halacha) agree that even the extrusion of one limb indicates birth, and thus life. The Talmud asserts, “Rabban Simeon ben Gamliel (c. 10 BCE - 70 CE was a sage and leader of the Jewish people. He was the head of the Sanhedrin ( Jewish Rabbinical court)) said: Any human being who lives thirty days is not a nephel [abortus] because it is stated: ‘And those that are to be redeemed of them from a month old shalt thou redeem (Numbers 18:16),’ since prior to thirty days it is not certain that he will survive.” Agreeing, Maimonides stated: “Whether one kills an adult or a day old child... he must be put to death if he kills deliberately... provided that the child is born after a full term pregnancy. But, if it is born before the end of nine months, it is regarded as an abortion until it has lived for thirty days, and if one kills it during these thirty days, one is not put to death on its account.” In other words, traditional Judaism holds that post-birth, or certainly after 30 days, a baby has full life status.

For this reason, during a high-risk birth, the mother is given priority. As stated in the Mishna (A major work of Rabbinic Judaism from 200 C.E., and the first major redac-tion into written form of Jewish oral traditions, called the Oral Torah) in Tractate Ohalot: “If a woman is undergoing a perilous pregnancy, the fetus may be destroyed since her life takes precedence over its life.” It also says in Exodus 21:22-23 that in a situation in which a man accidentally hits a pregnant woman, if the woman is killed then, “a nefesh (life) shall be given for a nefesh.” The man who struck her is a murderer and is punished accordingly. If the woman miscar-ries but does not die, the man is not liable for murder and must only pay monetary damages (myjewishlearning.com, 2008). Unlike in the Talmud, according to most American laws it is considered murder if a person kills a fetus without the mother’s consent (Colb, Sherry 2004). Within criminal law, the definition of life was expanded to include fetuses, differing from the Judaic perspective. American judicial bio-ethical decisions are not, however, uniform and may differ from state to state or between states and the federal govern-ment.

After discussing the beginning of life, it is time to examine the moment of death. The Judaic understanding of death initially was defined as a cessation of respiration at the nose, and more recently included brain function as well (Rosner, 2001). In the Babylonian Talmud, a debate occurs about saving someone on the Sabbath who is the victim of a build-ing collapse. “It is permissible to clear debris from a fallen building to ascertain if someone is alive. If he is found alive,

the debris can be cleared – otherwise leave him until after Sabbath. You must clear off the nostrils to check for breath-ing (Yoma 8:6-7).” Why his nostrils? It says in Genesis 7:22 “In whose nostrils was the breath of the spirit of life?” Commenting on this, Rashi (Rabbi Shlomo Yitzhaki (1040 –1105) was a rabbi from France, famed as the author of the first comprehensive commentaries on the Talmud and Tanakh (Hebrew Bible)) and Maimonides agree that if no air is coming from the nose, the person must be dead. Rabbi Yosef Karo also notes in the Shulchan Aruch, “If one cannot detect signs of respiration at the nose, then he is certainly dead (Orach Chayim 329:4).”

Modern scholars, for the most part, share this opinion. In 1968, Rabbi Immanuel Jacobovits, the Chief Rabbi of Great Britain, expressed, “The classic definition of death as given in the Talmud and Codes is acceptable today and correct.” Similarly, Rabbi Moses Schreiber ((1763-1838) author of the Chatam Sofer, noted Talmudist and Rabbi in Hungary) held that a person is dead “if the person is motionless and without pulse in neck or wrist and no spontaneous breath-ing (Chatam Sofer – Yoreh Deah 338),” just as Rabbi Isaac Unterman ((1886-1976) Chief Rabbi of Liverpool and Is-rael) said in 1968 that “One is dead when one has stopped breathing,” and Rabbi Eliezer Waldenberg ((1915-2006) Author of Tzitz Eliezer, a monumental halachic treatise which included a large recitation about Jewish medical eth-ics) defined death as “Cessation of both respiration and car-diac activity (Tzitz Eliezer).”

As, Rabbi Moshe Tendler a senior Rosh Yeshiva at Yeshiva Universit,y the Bella Tendler Professor of Jewish Medical Ethics, l Professor of Biology at Yeshiva College, and the holder of a a Ph.D. in Microbiology explained at the 1993 Jews’ College Medical Ethics Conference that “Brain stem death does not mean that the brain died and the body lives... The Mishna instructs us that anatomical decapitation results in halachic death of the entire body even though the heart still beats and the limbs twitch. The Talmud, in its state-ment Zikna Shaani, concludes that anatomical decapitation is not an absolute requirement. Even if no external wound-ing occurs, if the connection... between the brain and body is interrupted, the entire body is dead (Shulman, 1998).”

As heart transplants became popular, movement shifted from the American guide to death’s original rulings accord-ing to the heart (Rosner, 2001). After much debate, the gen-erally held American judicial definition of death became the loss of brain, independent lung, and heart function (Arthur L. Caplan et al, 2004). As The Harvard Criteria defines death, it is “total cessation of all brain functions, including the cessation of independent respiratory control (Shulman, 1998).”

According to generally held Judaic and American judicial rulings, a brain dead individual is dead. Even this simple premise is not completely accepted by some Orthodox Jew-ish authorities. Controversy still exists, however, in cases of patients in chronic vegetative states, who continue to mani-fest primitive brain function. The United States Supreme Court has reaffirmed the right of autonomy to request ces-

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sation of all life-prolonging therapy, including nutrition and hydration, even in cases of persistent vegetative state (Stein-berg, 2003). These were decided in the Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo cases (among others).

Karen Ann Quinlan, the first modern icon of the right-to-die debate, collapsed at a party after swallowing Valium in 1975. Doctors saved her life, but she suffered brain dam-age and lapsed into a persistent vegetative state. Her family waged a legal battle for the right to remove life support. They succeeded, but Quinlan kept breathing after the res-pirator was unplugged. She remained in a coma for almost 10 years until her 1985 death. Like Quinlan, Nancy Cruzan was left permanently unconscious and without higher brain function after a 1983 car accident. Cruzan’s family want-ed to remove her feeding tube; the case went to the U.S. Supreme Court, which ruled that there was not “clear and convincing evidence” that Nancy did not wish to have her life artificially preserved. The Cruzans later presented such evidence to the Missouri courts, which ruled in their favor in 1990. The Cruzans stopped feeding Nancy and she died later that month.

In 1990, Terri Schiavo suffered severe brain damage. Schi-avo spent the following years in rehabilitation centers and nursing homes, never regaining higher brain function. In 1998 her husband filed a legal petition to remove feeding tubes, claiming that his wife had told him before her medi-cal crisis that she would not want to be kept alive artificially. Terri’s parents fought this request. In 2000, a Florida judge ruled that life support could be discontinued. As legal ap-peals continued, pro-life activists began to insist that Schiavo should be kept alive. Schiavo’s feeding tube was removed in 2003 and reinserted days later when the Florida legislature passed “Terri’s Law,” allowing the state’s governor to issue a stay in such cases. The law was later ruled invalid by the courts. In 2005 Schiavo’s feeding tube was again removed, and the U.S. Congress was called into special emergency session to review the case; the federal judges and U.S. Su-preme Court refused to intervene. After two weeks without food and water, Schiavo died.

By reviewing the Judaic view of life and death, one can better understand the Judaic rulings that would apply in the above cases. Death, while brings the soul closer to God, is not anticipated. Only while alive can humans fulfill mitzvot (commandments) and follow the Torah; “Judaism teaches that the body and soul are separate yet indivisible partners in human life. Rather than imprisoning or corrupting the soul, the body is a God-given tool for doing sacred work in the world. It requires protection, care, and respect, because it is holy (Miller, 2000).” The human form is necessary for serving God, and thus should be preserved. The idea of liv-ing a Jewish life is living a life of quality and kedusha (holi-ness). With this philosophical background, it is easier to understand end-of-life decisions.

In terms of halacha, a ventilator will not bring a patient back to life if they have already died (Shulman, 1998). As Rabbi Feinstein (Moshe Feinstein (1895–1986) was a Lithuanian Orthodox rabbi, scholar and posek (an authori-

tative adjudicator of questions related to Jewish law), who was world-renowned for his expertise in halacha and was regarded by many as the de facto supreme rabbinic authority for Orthodox Jewry of North America.) said, “the doctors put him on a ventilator so that he breathes even though he is dead. Such breathing does not qualify him as alive.” Once a patient dies, all care to keep other organs alive can be removed. At the same time, it is forbidden to cause direct or indirect death, even of a goses (terminally ill patient). As Rabbi Yosef Karo said, “A goses is considered as a living person in all respects.” Similarly, Maimonides stated, “It is not permitted to bind his jaws, to stop up the organs of the lower extremities, or to place metallic or cooling vessels upon his navel in order to prevent swelling. He is not to be rubbed or washed, nor is sand or salt to be put upon him until he expires. He who touches him is guilty of shedding blood. To what may he be compared? To a flickering flame, which is extinguished as soon as one touches it (Rosner, 2001).”

Whereas euthanasia is clearly forbidden, withholding life-sustaining therapy may be permissible. Rabbi Moses Isserles (Moses Isserles (1520 - 1572) was an eminent Ash-kenazic Rabbi, Talmudist, and posek from Cracow, Poland renowned for his fundamental work of halacha, entitled HaMapah (lit., “the tablecloth”)), asserts, “If there is any-thing which causes a hindrance to the departure of the soul, such as the presence near the patient’s house of a knock-ing noise, such as wood chopping, or if there is salt on the patient’s tongue, and these hinder the soul’s departure, it is permissible to remove them from there because there is no act involved in this at all but only the removal of the im-pediment.”

In both the American and Judaic systems, removing treatment without patient consent is controversial. In the American system, with a living will, durable power of at-torney for health care, health care proxy, or assertions made by the next of kin, life-prolonging therapy can be removed, while in Judaism there is hardly a case where it is allowed without the patient’s verbal consent. Similar to appointing a legal guardian for children, according to Judaic sources, only when the parents and physician agree that it is in the child’s best interest, the disease is terminal, and it is causing unnecessary suffering, can therapy be withheld.

After exploring the questionable stages of death, one should inquire about the laws of the halachically dead. First, there are strict prohibitions against deriving benefit from a cadaver, mutilating a dead body, or delaying burial. All three of these address the issues of organ donation and au-topsy, both which appear to be against halacha. Although some sources in history as well as current rabbis who strictly interpret the laws agree, the majority opinion today allows organ donation and autopsies under certain circumstances. According to Dr. Ron Wolfson, autopsies can be performed when the physician claims that it could provide new knowl-edge that would help cure others or when the law of the land requires it. For organ donation, the laws differ regard-ing the ability to receive or donate organs. Rabbi Moshe

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Tendler argues that it depends on where the transplant is coming from Autograft (from one person to himself ), Al-lograft (from one human to another), or Xenograft (from an animal to a human), whether the source is living or cadav-eric, whether a whole organ or only part is needed, and on the organ being transplanted.

In the Torah, the sources supporting organ donations are: “And you shall surely heal (Exodus 21:19),” “And you shall restore (a lost object, which includes health) (Exodus 23:4),” and “You shall not stand on the blood of your fellow (Leviticus 19:16).” Live organ donation, if the donor is at minimal risk, is permissible or possibly obligatory, regardless of whether the organs are coming from or going to a Jew or gentile. If the donor is alive, even if in a terminally ill state, the risk must be minimal and only the kidneys, bone marrow, blood and split liver can be donated. If the donor is halachically dead, “pikuach nefesh” overrides all issues of desecration. In fact, according to Midat Chasidut (pious acts), donating organs both when alive and postmortem is a mitzvah. In terms of xenotransplantation, although one is not permitted to cause needless pain to animals, man is giv-en dominion over them; transplants are allowed even from non-kosher animals. Least debated, artificial or synthetic organs (heart valves, artificial joints, and synthetic skin) are permissible.

In America, multiple organizations advocate for organ donation. The questions of donation, as mentioned in the President’s Council on Bioethics’ amendments, are less con-cerned with whether it can be done, and more with organ allocation, ensuring that the recipients at greatest need re-ceive priority, “The majority of this structure focuses on the organizations that procure, allocate, and transplant human organs. This structure also establishes boundaries for the transferring of organs...” The Department of Health and Human Services has supplemented the law by creating a

set of federal regulations. People have the choice to donate organs both before and after death. In fact, the option of donating ones’ organs is built into the process of receiving a driving license, and will soon be on voter registration ap-plications.

Overall, the Judaic and American systems overlap on many end-of-life decisions. In terms of the Jewish perspective, the cases show the importance of preserving life at nearly any cost, respect and awe for the human body, and sensitivity of the difficulties within these situations. The American sys-tem stresses the flexibility of moral autonomous decisions, and may vary between states or between the states and the federal government. Both systems agree on the instance of death, establish a view on life, and strongly encourage or-gan donation. Both pull from past sources to approach new problems; whereas Jews pull from the Torah and Talmudic sources, Americans pull from the constitution and previous legal cases. The main differences stem from the role each system plays. In Judaism, halacha teaches one how to lead an ethical and God-fearing life, while in America, law serves to create a system where people can choose their path based on their own moral and religious convictions, within consti-tutional guidelines. Where the American system is backed mostly by democratic choice, the Judaic system is backed by standards of kedusha (holiness). Ultimately, both systems realize that end-of-life issues are convoluted, necessitating compassion and open-mindedness.Jennifer Chevinsky is a Sophomore in the Combined Program in Medicine at the University of Connecticut, majoring in Bioethics in Cross-Cultural Perspectives, and planning to minor in Philosophy and Religion.Dr. Stuart Miller is the faculty sponsor for this submission. He is a Professor of Hebrew, History and Judaic Studies in the Department of Modern & Classical Languages at the University of Connecticut.Address: Department of Modern and Classical Languages Box U-1057, University of Connecticut, Storrs, CT, 06269Email: stuart.miller@uconn.edu

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