Volume VI Issue i

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The Penn Bioethics Journal (PBJ) is the nation’s premier peer-reviewed, undergraduate bioethics journal. Established in 2004, the Journal features and provides a venue for the contributions of undergraduates to bioethics. PBJ, embracing the interdisciplinary focus of bioethics, reviews and publishes reports of empirical research and analysis of previous work -- addressing debates in medicine, technology, philosophy, public policy, law, theology and ethics among other disciplines. The biannual Journal additionally features news briefs and editorials reviewing current bioethical issues, as summarized by our undergraduate editorial staff. Undergraduate editors and authors have a unique opportunity to get involved with the peer-review process through the collaborative and rigorous review and preparation of PBJ. With an audience ranging from scholars in the field to a broader public seeking unbiased information, the Penn Bioethics Journal scholastically involves all undergraduates interested in the extensive field of bioethics.

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Penn Bioethics Journal Volume VI Issue i

Pharmaceutical Industry’s Ethical Responsibility to HIV/AIDS Sufferers in Developing CountriesStephanie Fosbenner, Lafayette University

Assesses the moral responsibility of pharmaceutical companies to dis-tribute ARVs to AIDS victims in impoverished populations through the use of stakeholder analysis.

Interview with Dr. Sarah Tishkoff

Bioethics in BriefEDIToR In CHIEF

Michael Weintraub

PUBLISHERVishesh Agrawal

MAnAgIng EDIToRSDaniel AlbornozArmin gollogly

Palak KunduIngrid Lindquist

Timothy PianTuua Ruutiainen

ASSoCIATE EDIToRSVishesh Agrawal

Shirley AhnSusan Anderson

genevieve BarnardMichael ChanDiana ChangKen ChangRob Fuino

Matthew gazzaraLeila glass

Angela HalsteadAndrew Jakubowski

Tucker JohnsSamantha Lammie Hagop KaprielianMegan Kauffman

Alina KimEmily Knudsen-Strong

Arthi KumaravelKristyn Manomivibal

Katie McCarthyEva noble

Chelsea ottFahim Pyarali

nayan RamirezSasha Riser-KositskySebastian Rowland

Daniel SantosIan Slack

Lee VandivierBarbara Wei

Kristine Wong

ASSoCIATE PUBLISHERIan Slack

CoVER DESIgnVishesh Agrawal

FACULTy ADVISoRJonathan Moreno, Ph.D.

Questions or Comments?Please direct all inquiries to the

Editor in Chief [email protected]

Contents

Towards a Military Medical Ethics Framework for genetic Human EnhancementTony Wang, University of Pennsylvania

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Analyzes the bioethics of future genetic modification of soldiers and ar-gues that bioethicists must create a framework of morality before such genetic modifications are feasible.

articles

1 Letter from the Editor Michael Weintraub

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PBJPe n n B i o e t h i c s J o u r n a l

18 Data Sharing in Rare Disease Research: The Benefits and Challenges of open Access Hok Khim Fam and Bernard C. Lo, University of British Columbia

21 The Expressivity of Prenatal Testing and Selective Abortion for DisabilityKiersten Batzli, American University

Referencing several theoretical frameworks, evaluates and critiques the argument that individuals who abort disabled fetuses are expressing a discriminatory message.

Explores whether the advantages of sharing genomic information among research institutions outweigh the risk of infringing on patientprivacy rights.

AWARD FoR EXCELLEnCE In UnDERgRADUATE BIoETHICS

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

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Dear PBJ Readers,

Thank you for picking up the Spring 2010 issue of the Penn Bioethics Journal (PBJ). Our Journal features scholarly articles addressing ethical debates in medicine, technology, genetics, philosophy, public policy, law, and theology. We aim to produce a publication where students can showcase thought-provoking papers and present opinions on relevant bioethical debates.

For those new to the field of bioethics, it can be difficult to know how to delve into current ethical debates. Strategies employed in bioethics illuminate central conflicts, present condensed ethical tensions, and make the discussion of these challenges accessible to individuals from all disciplines and backgrounds.

One of the most pressing debates in the news is health care policy reform. If we do not make appropriate and timely changes to our nation’s health policy, health care costs will continue to rise without a proportional increase in quality of care and will lower our nation’s standard of living. As a nation, where should we cut costs? In the last two years of a patient’s life, Medicare spends an average of $46,000 each year on medical expenses.1 While a great deal of money could be saved by drastically reducing care in these last two years, would this decrease in support be morally justifiable? How do we decide where to draw the line? Who should make this decision?

Before we can tackle these difficult but relevant problems, we need to better understand our collective ethi-cal principles as a nation. As individuals, we can use simple philosophical scenarios to help reveal our moral inclinations. Consider the popular scenario of the trolley problem:

There is a trolley with failed breaks moving down a track that splits into two separate tracks. Five people are standing on the left track and one person is standing on the right track. The banks are so steep that no one will be able to get off the track in time to avoid being hit and killed by the trolley. The switch on the track is set so it will go left and run over the five people. You operate the switch and have the ability to divert the trolley. You could switch it, killing one and saving five, or refrain from diverting the trolley and allowing five people die. What should you do?

Many find this problem an interesting brainteaser, especially when presented with different variations of the problem. By better understanding our individual answers and our underlying reasons for them, we have insight into our own position on complex bioethical debates. We can use simple scenarios to see what our true values are. We then may apply them to more complex situations.

Included in this issue of PBJ is a selection of papers from undergraduates across the continent. This issue’s Award for Excellence in Undergraduate Bioethics is given to “Towards a Military Medical Ethics Framework for Genetic Human Enhancement.” We congratulate Tony Wang for his outstanding paper. Also included in this Spring 2010 issue is an exceptional interview with Dr. Sarah Tishkoff, a professor in the Department of Genetics and Biology at Penn whose research focuses on human evolutionary genetics in the African Genetic Diversity Project.

I encourage you to help our Journal continue to improve. Submit an article, a commentary, or a news brief for our next issue so PBJ can continue to deliver high quality work.

Until then, enjoy your next bite of PBJ.

Letter from the Editor Michael Weintraub

Editor in Chief

Michael WeintraubEditor in Chief

University of Pennsylvania CW’11

1 Wennberg JE et al. Tracking the Care of Patients with Severe Chronic Illness: The Dartmouth Atlas of Health Care 2008.


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A new Mosquito-Transmitted Virus May Pose new Problems for the USJust as American public health officials started to see a

decline in West Nile Virus cases, the African-born Chikun-gunya virus has slowly spread across Europe and Southeast Asia. It has the potential to creep over to the United States.

First discovered in Tanzania in 1952, the Chikungunya virus is spread by Asian tiger mosquitoes, which, despite their name, are found on most continents, including the Americas. India has had a number of fatalities due to the virus, and Malaysia reported nearly 400 cases in 2009 alone. The most vulnerable areas are cities with high population density, poor sanitary conditions, and poor environmental controls, such as Mexico City and Mumbai. There have been cases of Chikungunya, however, as far as Italy and France.

Symptoms include fatigue, fever, muscle pain, joint pain, nausea, and vomiting. Currently, there is no vaccine for this virus.

Mark Dworkin, a professor at the University of Illinois, mentions that although the development of a vaccine would be useful for endemic areas, it should not be a priority for the United States because the country has not experienced

an outbreak. Dr. James Diaz of the Louisiana University Health Sciences Center fears that the virus will not be well publicized in the United States with the current focus on swine flu.

Physicians in many states have already been trained by the CDC to treat infected individuals in a quick and effi-cient manner. However, if one infected American traveler is bitten by a mosquito abroad, an outbreak similar to the West Nile Virus could follow.

-Fahim Pyarali, University of Pennsylvania

http://www.cdc.gov/ncidod/dvbid/westnile/surv&control.htmhttp://www.reuters.com/article/email/idUSTRE58H60320090919http://thestar.com.my/metro/story.asp?file=/2009/10/5/southneast/48283

38&sec=southneasthttp://columbiachronicle.com/exotic-disease-becomes-possibility-in-

midwest/

Bioethics in Brief

South Africa’s Rise in TB: The Role of Developed nationsSome estimate that tuberculosis (TB) has existed in the

African continent for thousands of years. Although many treatments have been effective in recent decades, South Af-rica has had an increasing number of TB cases. This increase may be attributed, in part, to the predominance of HIV in the area. HIV weakens the immune system and increases the likelihood of contracting TB, a phenomenon known as “co-infection.”

Studies have shown that providing anti-retrovirals (ARVs) can significantly reduce the number of TB cases in HIV-prevalent areas. Dr. Robin Wood, the director of the Desmond Tutu HIV Center in Cape Town, believes that tackling issues of ventilation and air pollution can further decrease TB transmission rates in South African cities. However, both of these initiatives require consistent fund-ing and assistance from industrialized nations.

According to Doctors Without Borders, nations around the world have contributed only 24% of the $2.18 billion re-quired to scale up TB research. In an ailing global economy, this funding can be hard to provide, but Peter Piots, the Ex-ecutive Director for the Joint United Nations Programme on HIV and AIDS (UNAIDS), claims that politicians “also have a moral obligation to address the social sector.”

Doctors Without Borders suggests that governments should offer cash prizes for successful advances in TB re-search. The practicality of this strategy in the current finan-cial climate is still under discussion.

-Fahim Pyarali, University of Pennsylvania

http://news.bbc.co.uk/2/hi/health/100618.stmhttp://www.soschildrensvillages.ca/News/News/child-charity-news/

Pages/CHildCharityReportsonFundingforHIVAIDS976.aspxhttp://www.medicalnewstoday.com/articles/168297.php

Bioethics in Brief

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Baltimore Schools Serve Healthier Food

On Monday, September 21st, Baltimore County Pub-lic Schools became the first school system to participate in Meatless Mondays. Serving vegetarian meals once a week, those in charge do not wish to promote vegetarianism but healthy omnivorism and increased consciousness about meat consumption. Meatless Mondays is a national cam-paign to reduce meat consumption for environmental and health benefits that was started in part by the Johns Hop-kins Bloomberg School of Public Health. The program cites various studies, such as a National Institute of Cancer report that linked the consumption of meat, particularly red meat, to cancer and cardiovascular disease. This change is part of a larger transformation of the BCPS food system headed by Food and Nutrition Director for the District Anthony Geraci. Beyond offering vegetarian options, reforms include buying only Maryland-grown produce, replacing deep-fat fryers with lower-fat ovens and moving away from prepack-aged meals.

Responses to the program are varied. Some students are excited and curious about the vegetarian meals, while oth-ers are cautious about the unfamiliar dishes and vegetables. Some teachers and principals use it as an opportunity to give lessons on diet, nutrition and food production. PETA awarded BCHS its “Proggy” award in recognition of its changes. The vice president of the American Meat Institute criticized the program for removing the students’ freedom to choose meat. This movement may indicate the start of a new public health campaign where institutions promote and enforce healthier food options. Similar to the cigarette-smoking campaign, health data may be used to promote de-cisions that go against the cultural grain.

-Sebastian Rowland, University of Pennsylvania

http://www.ncbi.nlm.nih.gov/pubmed/19717354?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=22

http://www.washingtonpost.com/wp-dyn/content/article/2009/05/05/AR2009050500876.html

http://food.theatlantic.com/stories/meatless-mondays-draw-industry-ire.php

http://www.peta.org/MC/NewsItem.asp?id=13630http://www.meatami.com/ht/d/ArticleDetails/i/54245http://www.ncbi.nlm.nih.gov/pubmed/19307518?itool=Entrez

System2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=5

http://www.baltimoresun.com/features/green/bal-md.gr.lunch24sep24,0,1379910.story

new york State offers Compensation for Eggs

In June 2009, New York became the first state to al-low public research money to be used to pay women for donating their eggs to research. The Empire State Stem Cell Board announced that women could receive up to $10,000 for contributing. Those in favor of the new policy argue that women already receive monetary compensation when they donate their eggs to women undergoing fertility treatment. Moreover, in the past, researchers have had dif-ficult finding unpaid egg donors. The expected increase in donors will open new possibilities for scientific advances in stem cell research. Although an Institutional Review Board

will monitor the payments, many are concerned about the ethical implications of the new policy. According to Arthur Caplan, director of the University of Pennsylvania Center for Bioethics, payment would lead poor women to discount the risks posed by the procedure. Currently, the National Academy of Science guidelines prohibit payment for eggs.

-Tuua Ruutiainen, University of Pennsylvania

http://www.nytimes.com/2009/06/26/nyregion/26stemcell.html

Bioethics in Brief


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Excise Tax for SodaOne cent per ounce. While it’s hard to imagine that those

numbers could incite controversy, a tax of such proportions may have great consequences for public health and the fast food industry. A report in the New England Journal of Medicine (NEJM) argues that the government should levy an excise tax on sugar-sweetened soft drinks. Studies have established a clear link between soft drink consumption and the incidence of obesity and type 2 diabetes. The NEJM re-port argues that the contribution of sugar-sweetened drinks to obesity justifies an excise tax on the beverages. Estimates place the costs related to treating the overweight and obese at $147 billion, with half of those costs paid publicly. The re-port proposes an excise tax of one cent per ounce for sugar-sweetened beverages. Critics of the excise tax have claimed that such taxes amount to “social engineering.” Proponents of the tax claim that it could reduce the amount of obesity

related expenditures. The authors of the NEJM report con-clude, “We believe that taxes on beverages that help drive the obesity epidemic should and will become routine.”

-Kavin Sundaram, University of Iowa

http://content.nejm.org/cgi/content/full/361/16/1599?query=TOC#R7http://www.cspinet.org/new/200909301.htmlhttp://www.nytimes.com/2009/10/08/us/08iht-letter.

html?pagewanted=1&_r=1&sq=soft%20drink%20tax&st=cse&scp=1

The First Living Will Suicide

On September 15, 2007, Kerrie Wooltorton of Norwich, England wrote her living will. Three days later, medical per-sonnel transported Ms. Wooltorton to Norwich University Hospital at which time Ms. Wooltorton handed her living will to the doctors. Distraught over not being able to con-ceive a child, the will stated that if she were to arrive at a hospital due to a suicide attempt, doctors should take no measures to revive or treat her. The will further stated that the only reason she had called the ambulance to take her to the hospital was so she would not have to suffer or die alone. After reading the will, any treatment attempted by doctors would be unlawful. Thus, fearing legal repercussions, the

hospital staff allowed her to die. On September 28, 2009, the Greater Norfolk Coroner deemed Ms. Wooltorton as having been mentally competent to make decisions regard-ing treatment for herself and stated that the hospital could not be blamed for her death.

-Ravi Desai, Drexel University

http://www.guardian.co.uk/society/2009/oct/01/living-will-suicide-legalhttp://www.telegraph.co.uk/health/6248646/Suicide-woman-allowed-to-

die-because-doctors-feared-saving-her-would-be-assault.html

Bioethics in Brief

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Q&A PBJ InterviewsDr. Sarah Tishkoff

How did you become interested in evolutionary genetics?

I started out as an anthropology major at UC Berkeley. I was inspired as early as high school by books by Margerat Meade about Samoa, and I always knew that I wanted to do field work. Initially, I thought I’d be a social anthropologist. However, while I was at Berkeley, I was inspired by Allan Wilson, a founder of evolutionary genetics, as well as sev-eral of his previous graduate students who were professors at Berkeley at the time with whom I did research including Vince Sarich, George Sensabaugh, and Mary Claire King. I decided to pursue a joint genetics and anthropology degree in my sophomore year. At one point I was also studying pri-mate behavior, but I decided that I wanted to use molecular biology techniques to address fundamental questions about human origins. For that reason, I decided to pursue a PhD at Yale in human genetics, rather than in anthropology, so that I would have strong training in human genetics and molecular biology. However, while at Yale, I also studied anthropology, evolutionary biology, and neuroscience.

Your research centers primarily on exploring ques-tions in human genetics and human evolutionary history. Why have you chosen Africa as your main focus for exploring genetic diversity?

While I was a graduate student in Kenn Kidd’s lab at Yale, I was studying genetic variation in the nuclear ge-nome in globally diverse human populations. At the time, people typically studied just one or two African popula-tions that they considered to be representative of Africa. However, I discovered considerable variation among ethnic groups in Africa, and I realized that they had a very differ-ent demographic history when compared to non-Africans. Unfortunately, little was known about African diversity and few DNA samples existed. For that reason, I went to South Africa as a visiting research scientist at WITS University for about four months in 1997, and then came back to the US to do a postdoc with Andrew Clark at Penn State (now at Cornell). I continued to study African diversity with Andy and decided that, if I was going to study that region,

I would need to collect samples myself. Also, I had always wanted to do field work but was never able to leave the lab as a graduate student. So, I applied for and received funding from National Science Foundation (NSF), as well as from the Leakey Foundation and Wenner Gren Foundation, which supported my initial research in Tanzania in 2001, research that I started while I was a junior faculty member at University of Maryland.

As you mentioned, DNA sample collection in many African regions had not previously been conducted. What practical and ethical challenges do you face in gathering your data? Are there regu-lated protocols you are required to or have elected to follow?

Many! I have always been extremely concerned about making sure that our research is conducted in an ethical manner. I first go through many rounds of Institutional Review Board (IRB) review at the university level that are quite stringent. These have to be repeated on a yearly basis. I then have to go through multiple rounds of ethics review in each country where I do my research, together with Af-rican collaborators. Typically, the proposals are reviewed by a board of ethicists and biomedical scientists and doctors. In some cases, I have had to go through additional reviews

Penn Integrates Knowledge (PIK) professor Dr. Sarah Tishkoff holds appointments in the Department of genetics in the School of Medicine and the Department of Biology in the School of Arts and Sciences at the University of Pennsylvania. Her research focuses on human evolutionary genetics, anchored by the African genetic Diversity Project. The attention her lab devotes to Africa has greatly increased genetic understanding of populations underrepresented in genetic studies, which has been critical in revealing larger discoveries regarding human evolution and migration. Dr. Tishkoff shared her unique experiences and interests in incorporating genetic and anthropological fieldwork and research with PBJ in this issue.

Tishkoff Lab


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through other government oversight committees. In all cases, we must receive ethical approval and research permits before embarking on research. These reviews are extremely detailed and usually require multiple submissions. They can take anywhere from six months to six years to complete. It is extremely important to have African collaborators who are active participants in the research and who are familiar with local cultural and ethical issues. I have spent many years establishing collaborations with researchers across Africa. We also include local people from the villages where we collect samples to help participate in the research. Hav-ing local Africans as active participants in research is ex-tremely important, both for the purposes of training and capacity building in Africa and for ensuring that research is conducted in a culturally sensitive and appropriate manner. After we get IRB approval, we typically have to get ap-proval at the regional level within each African country, at the village level, and then at the individual level. After ex-plaining all possible risks and benefits, all participants have to sign an informed consent form which has been approved both by the US IRB and the African ethical review boards for each country. These consent forms are translated into the local language and are read to participants. I also be-lieve that, as someone whose research is based in Africa, it is important that I play a role in training African scientists and assisting with capacity building. The long term goal is to build up local resources so that Africans can ultimately be conducting this research themselves. I have trained a number of African graduate students, postdocs, and even a high school intern. I currently have a graduate student in my lab from Kenya named Jibril Hirbo who is about to defend his thesis. You can learn more about him by check-ing out these recent news reports:

http://blogs.nature.com/news/blog/2009/10/asgh_2009_prob-lems_of_blood.htmlhttp://www.sciencenews.org/index/generic/activity/view/id/48800/title/African_genetic_diversity

What compensation, if any, do members of the African populations from which you gather mate-rial receive? Do they participate in any other way in the process?

We do not provide any monetary compensation because we want to avoid any possibility of coercion. We typically give a small gift of appreciation (for example a Polaroid photo), which they appreciate but is not large enough to make them feel pressured to participate (and many choose not to). We also typically provide medical supplies to the villages where we do research. These are available to all villagers regardless of whether they participate. We also feel that it’s important to return results to the participants which are translated into the local languages and explained in “layman’s terms”. We have found that the participants are extremely interested and eager to learn more about their ancestry. The idea that blood contains information about their ancestors passed from one generation to the next is very familiar to many African groups and is part of their

cultural beliefs. When I returned to one of the Sandawe villages in Tanzania a year after my initial research, one of the men in the village showed me a pamphlet that had been given out by missionaries. It was about science (but not about evolution, of course!). There was a picture of a double helix. He showed it to me and said, “This is what you are studying, right? So, you can use this to determine where black people in America come from in Africa, right?” He clearly completely understood what we were doing, and he was really excited to hear the initial results.

Recently, geneticists have begun to use genome-wide sequencing techniques to delve more deeply into the genetic information of our DNA. Can you speak briefly on the use of large-scale single nucleotide polymorphism (SNP) analysis? What are its applications? How is it used to compare dif-ferent populations?

There are many uses for genome-wide SNP and se-quencing analysis. I’ll just mention a couple of impor-tant uses. One is to do genome wide association studies (GWAS) to look for differences in frequencies of genetic variants in disease cases and controls. The idea is to find variants associated with the disease in populations that are likely to be physically linked to a disease-causing variant. With genome sequencing, it may be possible to find the functional variants that play a role in disease susceptibil-ity. This could lead to both diagnostic applications, but also towards a better understanding of etiology of disease which could then lead towards development of more effective treatments. Another use of sequencing would be to identify genetic variants that play a role in drug response, which is likely to differ amongst individuals. We currently have very little information about variation in drug response genes in Africans; we also have very little information about re-sponse to drugs generally, which means that some drugs that are effective in Europeans, for example, could be toxic in Africans. We can also look for regions of the genome that differ in frequency among populations - many of these regions may play an important role in adaptation to dif-ferent environments, for example, differences in climate, pathogen exposure, and diet. This could be useful for iden-tifying functional variants that play a role in normal varia-tion and in disease and will shed light on human evolution-ary history.

Personalized medicine usually comes up when we talk of the implementation of genetic under-standing into the practice of medicine. Given your participation in research in an under-researched population, do you see any feasible application of personalized medicine in the developing world?

The applications would be to develop more effective treatments and preventative measures in ethnically diverse populations. The problem in Africa is the fact that there

Interview: Dr. Sarah Tishkoff

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are often few resources, and the cost of the genomic tests are too expensive to be feasible for use on a large scale. Ul-timately, we need to develop new technology that will en-able genomic analyses at a very low cost. But even without personalized genomics at the individual level, we can learn something about differences at the population level, which would facilitate development of treatments and preventa-tive measures that are more effective in diverse African populations. However, because every individual may dif-fer in regard to ancestry - and we’ve shown in our recent Science publication that there is a lot of genetic variation even within small geographic regions in Africa and a lot of mixed ancestry in many individuals - determining indi-vidual ancestry and personalized medical treatment will be the ultimate goal for more effective treatment.

Your research description states that “Despite the fact that Africa plays a central role in human evolution, African populations have been greatly underrepresented in the study of human genetic diversity.” Historically, why does this precedent exist? How does under-representation affect the results and implications of those studies of genetic diversity that minimize African samples?

That’s a good question. I suspect that there are a number of factors including historically low levels of funding for re-search in Africa, political instability and lack of infrastruc-ture in many regions of Africa, and a lack of knowledge about the extent of genetic diversity on the continent and the importance of learning more about genetic diversity.

The Tuskegee Studies on syphilis are one note-worthy example of failure to obtain consent in scientific studies in the past. In your opinion, are these same ethical issues surrounding consent still prevalent in today’s science? Have scientists learned their lesson? What mechanisms are in place to ensure that scientists are following ethical codes when carrying out human studies?

I think that things have changed considerably since the days of the Tuskegee studies. Largely in response to that study, and others like it, there are now strict ethical guide-lines in place, and stringent review is required by the IRB members who are trained in addressing difficult ethical is-sues. However, this is not to say that all ethical issues have disappeared. As technology rapidly changes and genome scale studies are becoming more routine, this raises a whole new set of ethical issues. There is an urgent need for train-ing of ethicists who have a good understanding of genomic approaches and technology and for training of geneticists

with a good understanding of ethics. There is also an urgent need for human geneticists to work together with ethicists to determine proper protocols for research involving hu-man subjects. I don’t believe there is a single “one size fits all” approach for these studies. Ethical concerns may dif-fer depending on the nature of the study and the cultural background of the participants, and they may continue to evolve. I have personally consulted a number of times with ethicists when I had questions or concerns about the design of a study. I think it would be great if geneticists routinely teamed up with ethicists on research or if universities could offer a consulting service to deal with ethical issues.

What are the consequences of the disparity in ge-netic understanding of different ethnic groups?

The main consequence in disparity in genetic under-standing of different ethnic groups is that it could result in health disparities. Knowledge of genetic variation in ethni-cally diverse populations will facilitate genetic epidemiol-ogy studies so that we may have a better understanding of genetic and environmental risk factors for disease. In Af-rica, the three infectious diseases resulting in most deaths are malaria, TB, and HIV/AIDS. We are in urgent need of studies in diverse ethnic groups so that we can identify risk factors in these populations and to try to develop more ef-fective vaccines and treatments. We also know little about variation in drug-response genes in these populations. Un-derstanding genetic variation in ethnically diverse popula-tions will be important for developing treatments that are less toxic and more effective in all ethnic groups.

Will you be going back to Africa any time soon? If so, what are your goals for the upcoming trip?

Yes, we are planning several research trips to Africa over the next year. Our goals are to do detailed studies of both genomic and phenotypic variation in ethnically and geographically diverse African populations so that we may learn more about human origins, African population histo-ry, and the genetic basis of normal variable traits, including a number of anthropometric traits. We are also interested in learning more about how different populations have adapt-ed to diverse environments including differences in climate, diet, and pathogen exposure. We are particularly interested in studying genetic and environmental factors resulting in variation in immune response, carbohydrate, lipid and protein metabolism, and drug response. The results of this study could lead to a better understanding of human evolu-tion and adaptation, as well as development of more effec-tive preventative approaches and treatments in ethnically diverse African and African-American populations.

-Interview by Ingrid Lindquist

Interview: Dr. Sarah Tishkoff


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Towards a Military Medical Ethics Framework for Genetic Human Enhancement

On June 19, 2008, the House Subcommittee on Terror-ism, Nonproliferation, and Trade held a hearing on human genetic modification to discuss the future of genetics in international conflict and the military. Richard Hayes, the Executive Director of the Center for Genetics and Society warned others at the hearing that, while genetic modifi-cation possesses huge potential for “medical advances and improved health outcomes,” the downside is its even great-er potential for abuse: “in combination with [other] emerg-ing technologies…they could put agents of unprecedented lethal force in the hands of both state and non-state actors.” Given recent advances in genetic knowledge, it is feasible to genetically enhance soldiers (or insurgents in non-state contexts) to be capable of surviving tougher conditions and possessing greater destructive capabilities than ever before. The chairman of the subcommittee, Brad Sherman, alluded to the fact that many of the world’s governments already have clandestine genetic modification research projects un-derway, including the United States.

Military medicine has always been a contentious area of study, not fully accepted by the medical community nor truly acknowledged by the military community. Neverthe-less, the importance of military medical thought cannot be understated. In times of war, neither military nor medical frameworks can fully contextualize the moral problems faced by the military medical community. The ethics of care in the medical community is incompatible with many of the moral duties placed upon those in the military – and the opposite is also true. This tension between the two fields is epitomized in triage, the process of prioritizing care for

the wounded. From a medical perspective, the prima fa-cie obligation is to maximize life; thus, the most severely wounded should be treated first. However, from a military perspective, the prima facie duty would be to maximize the number of soldiers that can return to the battlefield; thus, the soldiers with the easiest wounds to treat should be treated first and those who are too severely wounded should be given secondary priority. The moral space that military medical considerations fit into is not adequately covered by the military or medical community. In fact, the existence of the two serves to exacerbate the conflicts of in-terest of those within the military medical sub-community.

With major recent advancements in genetic modifi-cation research and their development for use in military contexts, it is crucial to consider the moral implications of the genetically enhanced soldier. Since the exact nature of such research and the yielding technologies are not public information, the types of genetic modification the present paper engages in are theoretically possible but not nec-essarily extant. In doing so, this paper constructs a set of prima facie considerations and obligations that must be fulfilled in developing an actual moral code of ethics for human military genetic modification. This paper presents a set of basic criteria that helps bioethicists towards a mili-tary medical framework for genetic human enhancement

The status quo of the current military medical estab-lishment demonstrates that deontological moral consider-ations placed upon the military are often outweighed by teleological claims. In 1990 and in 1998, the Department of Defense believed that American soldiers should intake

Progress in genetic modification research has advanced significantly in the past decade. From somatic gene alterations to transgenic animals and crops, genetic modification will play an extremely influential role in our society in the near future. of particular interest are the medical applications of genetic modification. The possibility of treating, or even preventing genetic disorders such as diabetes, cystic fibrosis, and color blindness, present opportunities for major breakthroughs. There is even the use of genetic modification to enhance humans past their natural physical and men-tal limits. yet, despite the many positive impacts of genetic modifications, there is a lurking worry of its use for other uses that are morally contentious – such as genetic modification for military use. The present paper proposes and justifies a set of criteria regarding the ethical use of genetic modification for military purposes from a military medical point of view. The criteria themselves are not a moral framework for genetic human modification for military use but rather a set of prima facie considerations that must be fulfilled when creating such a framework. In establishing this list of ethical constraints, this paper lays a foundation of analysis that will be helpful in future development of this field of bioethics.

‡ University of Pennsylvania, [email protected]

Award for Excellence in Undergraduate Bioethics

Tony Wang‡

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a non-FDA approved, experimental drug to protect sol-diers against the threat of chemical and biological warfare. Though standard medical practice would require the mili-tary to obtain informed consent from soldiers, the military overturned this standard using an argument of “military necessity” (Gross, 22). In spite of the use of utility as an excuse to disregard moral considerations or even as a form of moral claim, the military and medical community both profess to respect and uphold certain mutual values: “In spite of divergent actors and interests, the ethics of medi-cine and armed conflict share norms anchored in the right to life, autonomy, dignity, and utility” (Gross, 23). However, if utility is a way to outweigh these other duties, then what good is it to even have these former values?

Michael Gross tries to answer this question in his ar-ticle “Bioethics and Armed Conflict: Mapping the Moral Dimensions of Medicine and War” by asserting that “in peacetime, those violating patient rights must justify their action; during war, those upholding patient rights generally bear the burden of proof.” Indeed, the Department of De-fense example highlights how a right that is usually expect-ed to be upheld, such as informed consent, must be shown to be necessary to uphold during times of war. To the extent that we can expect to see such conflicts between military and medical concerns during wartime, Gross claims that the medical establishment must demonstrate to the mili-tary the importance of keeping certain medical morals a prima facie consideration. Therefore, if we can demonstrate that from a military perspective a medical consideration must be respected, then we can construct a pragmatic mili-tary medical framework that will actually be followed and not ignored in the face of military necessity. This is the first criterion for any military medical framework of genetic enhancements: it must respect both military and medicine by embedding medical values within a military perspective. Notice that the directionality of this relationship is key; while we focus on medical morals, military issues are the primary considerations.

The first criterion respects Gross’ claim that the medi-cal profession uphold the burden of proof. It implies that the medical community must explain to the military why its values are important by defending them from a mili-tary point of view. Thus, this first criterion also functions to make the framework more operable by having it be accept-ed by the military and medical communities. While many would agree that a military medical framework should be accepted by both sides, many would disagree with Gross’ contention that the burden of proof should rest on the medical community. Nevertheless, the fact of the matter is that the burden of proof has always and continues to fall upon the medical community in practice.

We can use this first criterion to come up with our sec-ond criterion: any moral constraint we place upon human genetic modification for military use should uphold values fundamental to the military. This is exactly the argument made by Jessica Wolfendale of the Centre for Applied Phi-losophy and Public Ethics, a think tank based in Australia.

Though acknowledging that the military views ethics as a secondary operational concern, Wolfendale claims in her article, “Performance Enhancing Technologies and Moral Responsibility in the Military,” that there are certain core military moral values that are at the heart of its institu-tional integrity. One such moral value is manifest illegal-ity. As defined by the US Department of the Army’s Field Manual, manifest illegality states that a soldier committing a war crime or otherwise blatantly immoral act can still be held morally liable for her action even if the action was an order from a superior. In other words, soldiers are “bound to obey only lawful orders” and are still responsible for any actions that are unethical. Another military moral value is high standard of conduct. If the military were to allow pillaging, rape, and other acts of random destruction, the military as an institution would deteriorate into the status of “thugs” and “pirates.” To differentiate the military from state-endorsed agents of violence and destruction, the army places a high value upon a strong sense of morality and the discipline to exercise extreme moral agency. Any moral constraint on military use of genetic enhancements should be aligned with such core values. While this does not guar-antee that the military will obey them, it makes it extremely difficult to contradict such a moral constraint, as breaking them would violate a core military value thereby deteriorat-ing the very integrity and legitimacy of the military.

Since soldier moral agency is a core military value, we can derive another criterion: military human genetic modi-fication cannot significantly deteriorate the moral agency of soldiers. Wolfendale affirms this claim in her article: “performance-enhancing technologies that [undermine] moral responsibility would be morally impermissible.” Therefore, any form of genetic enhancement that would render soldiers not fully capable of making moral judg-ments is off limits. There is a caveat - while the use of alco-hol and drugs by soldiers can render the soldier less morally accountable, this is not the same thing as potentially sys-tematically eliminating a soldier’s moral agency. Whereas alcohol and drugs only diminish one’s moral agency (and is the soldier’s personal choice), genetic modifications hold the possibility of creating amoral soldiers or soldiers that do not possess full moral agency. One possible application of genetic modifications is the elimination of guilt and fear. Take propranolol for example, it is a beta-blocker that is can prevent the formation of traumatic memories, making it a potential method of preventing post-traumatic stress disorder (PTSD). While not a germline genetic modifica-tion, drugs capable of such effects are already extant and genetic modifications to render such effects permanent are possible. For example, a genetic modification that en-ables the body to produce and release propranolol during high-stress situations (triggered perhaps by the presence of adrenalin) would be one way to create the soldier inca-pable of having PTSD. Eliminating fear, guilt, and other related emotions would be desirable outcomes in soldiers, but emotions are key to our moral agency: “emotional re-sponses to the situations we are in play an important role

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in bringing the morally salient features of our situation to our attention” (Wolfendale, 30). If we were to genetically enhance soldiers to not be able to fear or feel guilt, then the soldier would not be able to fully understand the act or killing nor be able to comprehend its moral dimensions. In being unable to formulate such moral thought, the soldier loses an integral part of his moral agency. Wolfendale goes even further with this claim to assert that “a soldier who kills enemy combatants while under the influence of radical performance [enhancement] … would be unable to own his actions because he would not see himself as responsible (in-deed he would not be responsible) for the deaths he caused” (Wolfendale, 36).

Moral agency is a key value to uphold. From a medi-cal perspective, the physician would be harming the sol-dier if he were to genetically modify the soldier in such a manner. From a military perspective, the military would be preventing the soldier from being a morally accountable individual. Thus, it would violate its own standard of ethics, which holds individual soldiers as moral agents. In order to enforce manifest illegality and hold soldiers morally ac-countable for their actions, they must possess moral agency. Genetic modifications would compromise key moral values from both the military and medical community.

Fourth, genetic modifications cannot transform the sol-dier into something not socially accepted as human. Ge-netically modifying soldiers in such a manner that they are fundamentally non-human violates their right to return to civilian life. For physical transformations, if a soldier were to be half-human, half-animal, then he could not be rea-sonably expected to return to a civilian capacity. For ex-ample, if a human were genetically modified to grow scales, then he would most likely be shunned by society upon at-tempted re-entry. Even if he could function in a civilian setting, he would face stigma, avoidance, and fear by the general population. For non-physical genetic modification, this criterion becomes harder to evaluate. Certainly, trans-forming a soldier into a permanent zombie-like state or into a psychopathic killer might be military goals; however, such soldiers, while still visibly human, lack the ability to return to a normal civilian life. While not strictly codified in military ethics, the military has a duty to help soldiers return to civilian life upon completion of active duty. This is evident in the health, college tuition, and housing benefit packages the military purports to give to soldiers. If this were any indication of the military’s dedication to societal reintegration, then a non-human soldier would be preclud-ed.

Fifth, the military cannot use any genetic modifications that have a reasonably high chance of causing harmful side effects that are fatal, debilitating, or inherited. While side effects are common and probabilistic trade-offs we must accept for taking drugs or genetic enhancements, the mili-tary cannot use such genetic modifications if the side ef-fects are known to have a reasonably high risk of causing a severe effect because this violates the principles of allowing soldiers to return to a normal civilian life and preventing

unnecessary harm. This is clear in the case of fatal or de-bilitating side effects but still applies to harmful and lasting modifications to the soldier’s gametes, or reproductive cells. It is a violation of the right for a soldier to return to civil-ian life if his genetic modifications cause deleterious side effects to his progeny. Having children free from mutations and man-made inheritable disorders is part of our right to civilian life. Certainly, the fifth criterion presupposes effort by the military medical establishment to understand the ef-fects of the modification before implementation. However, it is not unreasonable to expect certain situations in which the military demands a new genetic modification to be used immediately without prior testing. In such cases, ignorance is not an excuse to waive this criterion. Nevertheless, when lacking information, the military medical community can-not reasonably assess the genetic modification. The bright line for determining when a modification is off limits is purposely not defined here. Determining when a set of side effects with its respective probabilities (if known) becomes severe enough is outside the scope of this paper.

Lack of information is certainly a complicating factor in developing a moral framework for military genetic hu-man modification. This is especially true since the chain of command in the military medical profession is purposely fragmented. The doctor administering a genetic modifica-tion may not know about the exact nature of the treatment nor may the researchers creating the modification know the ultimate purpose of their research. In order to overcome this difficulty, Leonard Rubenstein suggests in his article “Medicine and War” that the military create “an entity such as a military medical ethics unit” that would “resolve de-mands to subordinate fidelity to patients’ interest to reasons of state, judging the urgency of the military need and as-suring its consistency with international humanitarian law.” Rubenstein’s claim underscores an important aspect of the military medical profession that is different from the medi-cal profession. Whereas in the medical profession, doctors have much more information and can make a better deci-sion, military physicians often don’t have that luxury. This is especially true in the case of genetic modifications, where the lack of information prevents the physician from being able to balance between military and medical duties: “ask-ing physicians to engage in such balancing inevitably places them in untenable situations, since they lack both the com-petence and the facts needed to make a good decision” (Ru-benstein, 3). Such a military medical ethics unit would have more information and be placed in a high position within the military hierarchy. By having such a division within the military medical structure, there would be more institu-tional checks in place to better enforce the other criteria, especially those where lack of information complicates the military physician’s understanding of the moral dimensions of the issue at hand. While the military should be held ac-countable for its actions, a unit within the military would not be able to sufficiently enforce standards or navigate the murky moral waters of military genetic enhancements.

Since having a military medical ethics unit is far from a

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perfect solution, or one that even comes close to ensuring that the military will heed the aforementioned criteria, we need to have another form of accountability. Indeed, a mil-itary can still be legitimized for its actions, no matter how heinous, if the government supports it. For example, the Nazi Army in World War II, Janjaweed militia in Darfur, and Sherman’s troops during the Civil War all committed morally impermissible acts. Yet, such militaries were still legitimized because governments endorsed them. Thus, the sixth and last criterion proposed by this paper is that any military medical framework of genetic modifications must be codified by government policy. Since the military is a branch of the government and is ultimately controlled by the government, a framework for military genetic modifi-cations must be codified into an official government policy for us to be further assured that such a framework will be adhered to. Fortunately, the US government is already tak-ing steps to better craft its own position towards genetic en-hancements. In a memorandum to Don MacDonald of the House Committee on Foreign Affairs, Judith Johnson and Amanda Sarata of the committee’s Domestic Social Policy Division write that the government is taking a myriad of steps to better understand genetic modifications. The key players for such policy research include the Recombinant DNA Advisory Council, a council within the National In-stitute of Health, the President’s Council on Bioethics, and the Secretary’s Advisory Committee on Genetics, Health, and Society amongst many others. The existence of such in-stitutions indicates that there are already predefined policy pathways for formally instituting a military medical frame-work of ethics regarding genetic modification.

Richard Ashcroft takes this notion a step further when he writes in his article “Regulating Biomedical Enhance-ments in the Military” that “if regulation is to come about, it would need to come about internationally. No individual nation of any military consequence is likely to want to tie its hands by banning or controlling the use of these technolo-gies, especially since the temptation to use them is strong” (Ashcroft, 48). While Ashcroft’s statement is tempting to agree with, it presupposes every nation involved in such negotiations already has a stance on genetic modification. However, given the new and rapidly changing nature of ge-netic modification research, it is hard for any nation to have a solid stance on genetic modification. Therefore, while an international code of ethics for military genetic modifica-tions is certainly ideal, it is better to first focus on creating a domestic framework before moving onto the international arena.

In trying to construct an ethical framework for military genetic modification, I propose that there are six criteria that must be upheld. These criteria have several functions to ensure that the framework is realistically operable, morally significant, and ethically compatible with both military and medical community. The first criterion ensures practicality

by putting the burden of proof primarily upon the medi-cal community. If the first criterion is not met, then the military will not feel the obligation to uphold the frame-work. The second criterion ensures moral significance for the military community. Because the military community oftentimes views ethics as a secondary issue, the second cri-terion ensures that the military has a vested interest in not engaging in certain types of genetic modification research. These limitations are morally significant since their viola-tions would result in the military compromising its core values. The third to fifth criteria are specific limitations that provide concrete examples of what sorts of genetic modi-fications should be considered morally taboo. Such a list is certainly not exhaustive, but covers a wide range of moral values that are ethically compatible for both military and medical community - such as prevention of unnecessary harm, right to normalcy (for the military, this is the right to return to civilian life; and for medicine, this is the right to reduce pain and suffering), and the duty to moral agency. Lastly, if the framework is not enforced, then it is not sig-nificant. To make it significant, we must make it realisti-cally operable. The last criterion enhances the significance of the framework insofar as a codified framework is more likely to be enforced than one that is not. I also consider the concept of a military medical ethics unit within the military and international standards for military genetic modifica-tion. While I agree with their basic tenets, I stop short of making them criteria since they are both somewhat prob-lematic.

At the crossroads of two contrasting frameworks of duty and obligation, it is extremely difficult to synthesize a new framework specifically for military medicine. With regards to genetic modification, there is a strong tempta-tion to become overwhelmed by the plethora of conflicting interests. Indeed, there is little existing literature regarding military medical ethics towards genetic modification. One reason is that the field of research is new and its dimen-sions not clearly understood. But another reason is that it is hard to craft a truly comprehensive and satisfactory ethics framework for this area. While this paper cannot profess to be that framework, it is the goal of this paper to serve as a stepping-stone towards a military medical ethics frame-work for genetic human enhancement.

Article

About the AuthorTony Wang is a sophomore attending the Wharton School at the University of Pennsylvania concentrating in Finance, operations and Information Management, and Marketing.

Dr. David Caruso is the faculty sponsor for this submis-sion. He is the Program Manager for oral History at the Chemical Heritage Foundation and a visiting professor at the University of Pennsylvania.


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Military Medical Ethics

Ashcroft, Richard Edmund. (2008). “Regulating Biomedical Enhance-ments in the Military.” American Journal of Bioethics, 8(2), 47-9.

Dees, Richard H. (2008). “Soldiers as Agents.” American Journal of Bioethics, 8(2), 46-47.

Garreau, Joel. (2005). “Perfecting the Human.” Time, 151(11). Gross, Michael. (2004). “Bioethics and Armed Conflict.” Hastings Center

Report, 34(6), 22-30.Hallgarth, Matthew W. (2007). “Bioethics and Armed Conflict: Moral

Dilemmas of Medicine and War.” Journal of Military Ethics, 6(1), 83-84.

Joy, Robert J. T. (2007). “Bioethics and Armed Conflict: Moral Dilemmas of Medicine and War.” Journal of Military History, 71(2), 605-606.

Kottow, M. H. (2006). “Should Medical Ethics Justify Violence?” Journal of Medical Ethics, 32(8), 464-467.

Lev, Ori. (2008). “Assessing the Importance of Maintaining Soldiers’ Moral Responsibility—Possible Trade-Offs.” American Journal of Bioethics, 8(2), 44-45.

Moreno, Jonathan D. (2008) “Embracing Military Medical Ethics.” American Journal of Bioethics, 8(2).

Rosenberg, Leah, and Eric Gehrie. (2007). “Against the use of Medical Technologies for Military Or National Security Interests.” American Journal of Bioethics, 7(5), 22-24.

Rubenstein, Leonard S. (2004). “Medicine and War.” Hastings Center Report, 34(6), 3-6.

Russo, Michael B., et al. (2008). “Ethical use of Cogniceuticals in the Militaries of Democratic Nations.” American Journal of Bioethics, 8(2), 39-41.

United States. Cong. House. Committee on Foreign Affairs. (2008). “Genetics and Other Human Modification Technologies: Sensible International Regulation or a New Kind of Arms Race?, Hearing. 19 June 2008, 110th Cong., 2nd sess. Washington: Government Printing Office.

Wolfendale, Jessica. (2008). “Performance-Enhancing Technologies and Moral Responsibility in the Military.” American Journal of Bioethics, 8(2), 28-38.

References

Certificates in Bioethics withSpecializations in Clinical Ethics and Research Ethicsand Master of Science in Bioethics

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Certificates in Clinical Ethics are recognized for credit by the Penn MBE Program.

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Pharmaceutical Industry’s Ethical Responsibility to HIV/AIDS Sufferers in Developing Countries

Developing countries have been devastated by the AIDS pandemic, which has been described as “the most dramatic, pervasive, and tragic pandemic in recent history” (AVERT, 2008). The advent of antiretrovirals (ARVs) in the late 1980s to treat HIV/AIDS enhanced and prolonged the lives of millions of sufferers and marked an advance for both the pharmaceutical industry and public health. In particular, it highlighted the vital contribution the pharma-ceutical industry makes to improve public health by devel-oping and manufacturing drugs that can alleviate suffering (Santoro & Gorrie, 2005).

However, the introduction of antiretrovirals also sparked tension between the pharmaceutical industry and society at large, especially in developing countries. While the prices of antiretrovirals have declined substantially in developing countries during the last decade, they remain expensive and out of the financial grasp of a majority of HIV/AIDS sufferers in developing countries. AIDS activ-ists assert that the cost of antiretrovirals is excessive, and they have demanded that pharmaceutical companies re-duce their prices for developing countries. Pharmaceutical companies have countered that they require large profits to fund future drug research and development (Law, 2006). The conflict between society and the pharmaceutical in-dustry derives from healthcare’s dual status as both an eco-nomic commodity and a fundamental right of all people (Weber, 2006).

As the primary provider of an essential healthcare tool,

namely medicinal drugs, the pharmaceutical industry pos-sesses the material resources to assist in alleviating suffer-ing in developing countries. While there are multiple valid approaches that can be taken to evaluate the ethical dimen-sions of a business’s actions, I will focus exclusively on the theory of stakeholder analysis. I will use this theory to ar-gue that the pharmaceutical industry can help to provide antiretroviral drugs for HIV/AIDS sufferers in developing countries without placing an unreasonable burden on its stockholders. Thus, I will argue that the pharmaceutical industry has an ethical responsibility to help people suffer-ing from HIV/AIDS in developing countries.

While ethical responsibility includes observing laws and regulations, it is not limited to this, because what is le-gally permissible is not always ethically acceptable (Weber, 2006). The distinction between “legal” and “ethical” is cru-cial and can be reduced to the discrepancy between “having the right” to do something and the “right thing” to do. The theory of stakeholder analysis maintains that businesses are operated for reasons other than to maximize their profits. According to the stakeholder analysis model, corporations operate for all those who have a stake in them, including internal and external parties (Gumbus, 2008). A stake-holder in a business is someone who is directly affected, either positively or adversely, by the business’s operations (Weber, 2006). Stakeholders in the pharmaceutical indus-try include stockholders, physicians, clinical researchers, and patients who utilize medicinal drugs (Weber, 2006).

The AIDS pandemic represents one of the worst public health crises ever. Developing countries in particular have been ravaged by the pandemic. The development of antiretrovirals (ARVs) in the late 1980s forever altered the course of the pandemic, transforming AIDS from a death sentence into a chronic, but treatable disease. However, the introduction of ARVs sparked tension between the pharmaceutical industry and society at large, especially within developing coun-tries. Although available, ARVs were incredibly expensive and out of the financial grasp of most sufferers in developing countries. Despite pressure from AIDS activists to reduce the prices of their ARVs for sufferers in developing coun-tries, pharmaceutical companies argued that they required large profits to fund future research and development. This paper uses the principles of stakeholder analysis to evaluate whether the pharmaceutical industry has fulfilled its ethical responsibility to provide affordable ARVs to AIDS sufferers in developing countries. In order to act in an ethi-cal manner, pharmaceutical companies must ensure that the burdens and benefits associated with their actions are fairly distributed amongst their various stakeholders. Thus, pharmaceutical companies must balance their financial responsibility to their stockholders with their commitments to their other stakeholders, specifically HIV/AIDs sufferers in developing countries who require but cannot afford antiretroviral drugs to survive. This paper also evaluates the im-pact that intellectual property rights, most notably patents, have on antiretroviral affordability in developing countries.

Stephanie Fosbenner‡

‡ Lafayette University, [email protected]

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Leonard J. Weber, a business ethicist, maintains that to operate in an ethical manner, a pharmaceutical company must evaluate how its practices affect its various groups of stakeholders. Weber asserts that in doing so, the company should ensure that the burdens and benefits that accom-pany its actions are fairly, although not necessarily equally, distributed amongst its stakeholders (Weber, 2006). While the terms “fair” and “equal” are often used interchangeably, there is a crucial distinction in their meaning; what is fair is not necessarily equal. “Equal” implies that everyone re-ceives the same treatment, while “fair” implies that every-one’s basic needs are fulfilled.

The debate over antiretroviral affordability primarily concerns two of the pharmaceutical industry’s stakehold-ers: their stockholders and HIV positive people in develop-ing countries who require antiretrovirals to survive but are unable to finance them. Both parties have a stake in the pharmaceutical industry’s success, but stand to be burdened and benefited differently by the industry’s actions. Stock-holders judge the pharmaceutical industry’s success on its profitability, measured by the financial return they receive on their investments in the industry’s stock. Stockhold-ers will experience a financial burden if the pharmaceuti-cal industry fails to make a substantial profit. HIV/AIDS sufferers in the developing world who cannot afford their necessary medications judge the pharmaceutical industry’s success on their ability to access lifesaving antiretrovirals. They will experience a health burden, often extreme suffer-ing or death, if they are deprived of essential antiretrovirals. It is important to note that there are multiple factors other than cost that affect antiretroviral availability in developing countries, including cultural norms and beliefs, lack of ef-ficient healthcare delivery systems, governmental commit-ment, and education. Thus, while reducing costs will not necessarily guarantee that HIV/AIDS sufferers in develop-ing countries have access to antiretrovirals, cost is a major barrier to access that should be evaluated.

As a for-profit business, pharmaceutical companies must focus on satisfying their stockholders because they provide the capital that enables the company to function. However, as asserted by the theory of stakeholder analysis, businesses must operate for all those who have a stake in the business. Therefore, pharmaceutical companies have an obligation to balance financial commitments to their stockholders with responsibilities to HIV/AIDS sufferers who require but cannot afford antiretroviral drugs to survive (Weber, 2006). According to Weber, at the very least society demands that businesses, while in pursuit of financial gain, should avoid inflicting harm upon their stakeholders. It is appropriate for companies that provide non-essential products, such as cosmetics and toys, to focus solely on circumventing harm in their quest for wealth. This is justifiable because the business’s stakeholders are not unreasonably burdened by being deprived of the non-essential product the company is marketing. However, businesses that provide goods that are indispensable to the public’s well-being have a higher level of responsibility. Pharmaceutical companies fall into

this business category because they produce antiretroviral drugs that HIV/AIDS sufferers rely on for survival. The burden imposed on HIV/AIDS sufferers in developing countries by being deprived of antiretrovirals drugs is over-whelming, because those people will die without the drugs (Weber, 2006).

Current figures suggest that the pharmaceutical indus-try’s stockholders have been grossly over-compensated, at the cost of the industry fulfilling its responsibility to help provide affordable antiretrovirals to HIV/AIDS sufferers in developing countries. The pharmaceutical industry ranks second in all business sectors in return on shareholder equi-ty, with a return rate of 27.6%, which is more than 2.5 times that of the Fortune 500 median (Pattison, Warren, Peck & Clemente, 2003). In 2007, revenues for U.S. pharma-ceutical companies totaled $315 billion (ResearchInChina, 2009). In 2008, pharmaceutical companies attained an average profit margin of 16.4%, which was the seventh highest of the 215 industries tracked by Morningstar, a prominent investment research firm. Profit margin refers to the amount of revenue remaining after paying salaries and other operational expenses (Newman, 2009).

According to a 2008 United Nations Report on the Global AIDS Pandemic, at the end of 2007, 3 million HIV/AIDS sufferers in developing countries were receiv-ing antiretroviral therapy, but 6.7 million were still unable to access life-saving drugs due to, among other factors, cost (UNAIDS, 2008). Over the course of the last decade, the cost of antiretroviral therapy has declined in developing countries to about 350 USD per patient per year (Yazdan-panah, 2004). However, the price of ARV therapy remains expensive relative to national healthcare expenditures in developing countries that are most impacted by AIDS. For example, in 2006 per capita total expenditure on health was only 353 USD in Swaziland, which has the highest adult HIV prevalence rate in the world (WHO, 2006)

The industry maintains that it requires large profits to fund future drug research and development (Santoro & Gorrie 2005). This assertion is questionable. According to their 2008 filings with U.S. Securities and Exchange Commission, U.S. pharmaceutical companies spent only 15 cents of every dollar on research and development, com-pared with 30 cents on administration and marketing and more than 20 cents on shareholder equity (McArdle, 2009) . While the pharmaceutical industry’s claim that it needs high revenues for research and development is unsubstanti-ated, the industry’s assertion that drug development is ex-pensive and time-consuming is accurate. Researching and developing a single drug consumes 12-15 years and costs $800 million (Thomas, 2008). The actual cost of manu-facturing a drug is significantly less than the investment made in researching, testing, and marketing it. In today’s technologically advanced society, it is easy to copy a drug. A so called “generic manufacturer” can copy a drug and profitably market it at a much lower cost than the original. Generic competition detracts from the original innovative company’s profits, and makes it impossible for the company

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to recoup its research and drug development expenditures (Santoro & Gorrie, 2005). To prevent this from occurring, the pharmaceutical industry relies upon the patent system.

Patents confer protection to intellectual property, which refers to creative products of the mind, such as inventions and artistic works (World Intellectual Property Organiza-tion, 2008). Patents protect drugs from being unlawfully copied by generic manufacturers for a designated amount of time, usually twenty-years so that the innovative company can recoup its research and development expenditures. Ar-guably, the patent system is necessary for innovation; with-out the recognition and financial gain that patents promise, pharmaceutical companies would have little incentive and insufficient financial resources to invest in future drug re-search and development (Santoro & Gorrie, 2005). The development of drugs to treat HIV/AIDS epitomizes the strengths and weaknesses of pharmaceutical patent protec-tion. The patent system and the immense profits it had guaranteed to innovative pharmaceutical companies ul-timately fueled the development of antiretrovirals (Law, 2006). Unfortunately, the same patent protection laws en-sured that the drugs would be extremely expensive, beyond the financial reach of many sufferers (Santoro & Gorrie, 2005).

The advent of AIDS drugs sparked tension between society and the pharmaceutical industry, particularly in sub-Saharan Africa, the region of the world where AIDS is most rampant. African government leaders maintained that their people were too poor and their healthcare needs too urgent to absorb the high prices that pharmaceuti-cal patents demand. African leaders and AIDS activists groups favored ignoring patent protection laws and im-porting cheaper versions of the drugs from generic man-ufacturers in countries like Brazil and India (Santoro & Gorrie, 2005).

Prior to the mid-1980s, pharmaceutical patents were only weakly protected in most developing countries. How-ever, the pharmaceutical industry worked to strengthen patent protection in developing countries by lobbying for legislation that limited the countries’ abilities to import ARVs from generic manufacturers. The pharmaceutical industry was successful in its lobbying efforts, effectively eliminating developing countries’ only feasible option for providing their impoverished citizens with lifesaving anti-retroviral drugs; pharmaceutical companies refused to make concessions in their prices so patent protected versions of the drugs remained expensive. Meanwhile, pharmaceutical companies continued to report enormous profits (Santoro & Gorrie, 2005). For example, from 1993-1994, Pfizer recorded a 23% increase in the price of its stock, GlaxoS-mithKline a 20.8% increase (Weber, 2006).

After the formation of the World Trade Organization (WTO) in 1995, the conflict between the multinational pharmaceutical industry and developing countries subsided with the adoption of the TRIPS (Trade-Related Aspects of Intellectual Property) agreement (Santoro & Gorrie 2005), which established a common set of international

rules that dictated “minimum levels” of patent protection that all members of the WTO, 148 countries in total, must confer to intellectual property, mainly pharmaceuticals (Sa-tyanarayana, 2006, para. 4). The TRIPS agreement had the greatest impact on developing countries, many of which observed either basic patent protection laws or none at all (AVERT, 2008). According to Dr. Gro Harlem Brundt-land, then director of the World Health Organization, the “TRIPS agreement was designed to strike a balance be-tween the rights of pharmaceutical patent holders and the rights of patients” (Mutume, 2008, para. 6). However, op-ponents of the agreement likened it to a “cosmetic plan,” construed by the pharmaceutical industry to appear sympa-thetic to the international AIDS crisis and to appease criti-cism, while protecting its commercial interests (Santoro & Gorrie 2005).

Controversy surrounding the TRIPS agreement inten-sified in 1997 when South Africa passed an amendment to its Medicines and Related Substances Act, authorizing the use of compulsory licensing and parallel importing to provide low-cost antiretrovirals to South Africans in need (Santoro & Gorrie 2005). The United States government, pressured by the pharmaceutical industry, which asserted that monetary losses would have a detrimental impact on its future research and development initiatives, responded by placing South Africa on its infamous Section 301 watch list. Countries on this list are subjected to unilateral trade sanctions (Santoro & Gorrie, 2005). Despite its claims, the pharmaceutical industry continued to amass huge profits. For example, from 1997-1998, pharmaceutical giant, Pfizer Inc., which holds patents to multiple HIV/AIDS drugs, enjoyed a 23% increase in its worldwide revenues and a 690% return on its stock shares (Pharmaceutical Industry, 2008, sec. “Pfizer Inc.”).

In February of 1998, three months after the U.S. gov-ernment placed South Africa on its Section 301 watch list, the Pharmaceutical Industry Association and 39 of its affiliate drug companies filed a lawsuit against the South African government, claiming that its Medicines and Re-lated Substances Control Amendment violated the TRIPS agreement. Intense global scrutiny eventually forced the U.S. government to remove South Africa from its Section 301 watch list and the pharmaceutical industry to with-draw its lawsuit (Santoro & Gorrie, 2005). However, the lawsuit stalled the implementation of the Medicines and Drugs Act for more than three years, during which time an estimated 400,000 South Africans died from AIDS (Health GAP, 2008, sec. 2).

From the perspective of stakeholder analysis, the TRIPS agreement and the pharmaceutical industry’s law-suit exacerbated the unfair distribution of benefits and bur-dens that had long pervaded the pharmaceutical industry. Pharmaceutical company stockholders and people suffer-ing from HIV/AIDS in developing countries who cannot afford lifesaving antiretrovirals are both stakeholders in the pharmaceutical industry (Weber, 2006). Stakeholder analysis maintains that businesses must operate for all of

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their stakeholders. According to this model, it is ethically amiss for the pharmaceutical industry to take actions that deliver exclusive benefits to their stockholders, while ne-glecting the needs of impoverished HIV/AIDS sufferers. By supporting the TRIPS agreement, the pharmaceutical industry ensured profits for its stockholders but imposed an unreasonable and inhumane burden on HIV/AIDS suffer-ers in developing countries by restricting access to essential ARVs.

The Pharmaceutical Industry Association’s lawsuit against the South African government motivated the TRIPS Council on Intellectual Property Rights to reevalu-ate the TRIPS Agreement’s negative impact on access to HIV/AIDS drugs for people suffering in developing coun-tries (Satyanarayana, 2007, para. 7). In June 2001, the WTO adopted the Doha Declaration, which acknowledg-es that patents can be detrimental to public health through their impact on prices. Article 4 of the declaration states that, “While reiterating our [WTO’s] commitment to the TRIPS Agreement, we affirm that the agreement can and should be interpreted and implemented in a manner sup-portive of WTO Member’s right to protect public health and, in particular, to promote access to medicines for all” (World Trade Organization, 2001).

Since the implementation of the Doha declaration, individual pharmaceutical companies have made strides to better fulfill their ethical responsibility in providing affordable AIDS drugs to people suffering in developing countries, particularly in Africa. For example, in 2001, as part of its “Accelerated Program to Fight AIDS in Africa,” Bristol-Meyers Squibb vowed to stop preventing generic drug manufacturers from selling low-cost versions of Zerit, an antiretroviral it produces. The company also reduced the cost of two of its antiretrovirals for HIV/AIDS sufferers in Africa. Merck & Co. followed suit, agreeing to reduce the prices of two of its antiretrovirals in Africa to one-tenth of the price of the drug in the United States (Petersen & McNeil, 2000, para. 7).

Bristol-Meyers and Merck’s actions are examples of dif-ferential drug pricing, whereby a pharmaceutical company charges different prices for its drugs in different markets according to purchasing power (Thomas, 2001). It has been argued that differential pricing is unfair to patients who have to pay full-price for their drugs (Santoro & Gor-rie, 2005). However, it is crucial to recognize that within one group of stakeholders there are people facing disparate economic and social circumstances.

Returning to the distinction between “equal” and “fair,” philosopher Ronald Dworkin emphasizes that differen-tial pricing would indeed be unfair if we lived in a society where all goods were distributed equally, but this is not the case. Dworkin asserts that the fairest means of societal distribution should not be based on equity, but rather on the principle of treating every individual as an equal (San-toro & Gorrie, 2005). Consider all of the patients who rely on the drugs that pharmaceutical companies manufacture. According to business ethicist Leonard J. Weber, these pa-

tients are similar to each other in that they are all stake-holders in the pharmaceutical industry, and thus affected by its actions (Weber, 2006). However, some of these patients are able to bear the financial burden of paying full price for their drugs, while others cannot. It makes sense to exert effort to provide antiretrovirals to those who are in most need of them but least able to finance them, namely people suffering in developing countries. According to statistics from 2005, 93% of HIV/AIDS sufferers who lack access to essential antiretrovirals live in developing countries (For-sythe, 2005). Dworkin argues that HIV/AIDS sufferers in developing countries are owed more than the rest of us just to elevate them to our level of living. It would be unfair for the pharmaceutical industry to provide cheaper drugs to the people in developing countries if these countries could already provide for themselves, but that is not the case (Santoro & Gorrie, 2005).

The theory of stakeholder analysis adopts the view that businesses are operated for reasons beyond the capitalistic rationale of maximizing profits. The model maintains that instead, businesses are operated to fulfill the needs of their stakeholders (Gumbus, 2008) Business ethicist Leonard J. Weber asserts that pharmaceutical companies must consid-er how their policies affect their different groups of stake-holders (Weber, 2006). Weber asserts that the pharmaceu-tical industry must ensure that the burdens and benefits that accompany its actions are distributed fairly amongst its various stakeholders (Weber, 2006).

The debate over antiretroviral affordability primarily in-volves two of the pharmaceutical industry’s stakeholders: its stockholders and HIV/AIDS sufferers in developing countries who need but cannot afford ARVs. Stockhold-ers and impoverished HIV/AIDS patients in developing countries have conflicting interests in the pharmaceutical industry’s success and are impacted in very different ways by the industry’s actions. Stockholders judge the pharma-ceutical industry’s success based on its profitability, while impoverished HIV/AIDS sufferers in developing countries judge the industry’s success based on their access to ARVs. According to the stakeholder analysis model, it is unethical for the pharmaceutical industry to act in ways that deliver benefits to its stockholders and impose unreasonable bur-dens on HIV/AIDS sufferers in developing countries, and vice versa.

Previously, the industry has largely ignored the needs of its stakeholders in developing countries, instead taking actions that ensure large profits for its stockholders but re-duce antiretroviral accessibility for poor HIV/AIDS suffer-ers in developing countries. The amount of sacrifice that pharmaceutical companies and their stockholders must make to expand access to antiretrovirals in the developing world is not great relative to the amount of suffering cur-rently occurring there. For example, as stated previously, U.S. pharmaceutical companies alone amassed a profit of $315 billion in 2008. Currently, it costs an average of $350 per patient in developing countries to provide ARV treat-ment for one year. To expand ARV treatment to the 6 mil-

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AVERT: AVERTing HIV and AIDS (2008). HIV and AIDS in Africa. Retrieved April 18, 2008 from: http://www.avert.org/aafrica.htm

California State University – Stanislaus (1998). Pharmaceutical Industry. Retrieved April 24, 2008 from <http://web.csustan.edu/manage/har-ris/industry1.html

Charlotte, D. (2001). Mandela hits out at Aids drug firms. Retrieved April 16, 2008 from: http://www.guardian.co.uk/business/2001/apr/16/aids

Forsythe, Steven S. (2005). The Affordability of Antiretroviral Afford-ability in Developing Countries: What Policymarkers Need to Know. Retrieved November 15, 2009 from http://www4.ensp.fiocruz.br/financingcare/system/PDF/cat_1_art_16_FORSYTHE_98_eng.pdf.

Gagnon, M-A. & Lexchin, J. (2008). The Cost of Pushing Pills: A New Estimate of Pharmaceutical Promotion Expenditures in the United States. Retrieved September 1, 2009 from http://www.plosmedicine.org/article/info:doi/10.1371/journal.pmed.0050001

Gumbus, Andra (2008). Integrating Ethics in the Business Classroom. Retrieved November 22, 2009 from www.sacredheart.edu/.../1258_ethics_module_business_ethics.doc

Health GAP. (2000). AIDS Activists Take Over GlaxoSmithKline Inves-tor Relations Office. Retrieved April 24, 2008, from: http://www.healthgap.org/press_releases/01/022101_AU_PR_GLAXO_NYC.html

Law, J. (2006). Big Pharma: Exploring the Global Healthcare Agenda. New York: Carroll & Graf Publishers.

Mutume, G. (2008). Health and ‘Intellectual Property. Retrieved April 16, 2008 from: http://www.un.org/ecosocdev/geninfo/afrec/vol15no1/15no1pdf/151aids8.pdf

Newman, Rick (2009). Why Health Insurers Make Lousy Villans. Retrieved November 15, 2009 from http://www.usnews.com/money/blogs/flowchart/2009/08/25/why-health-insurers-make-lousy-villains.html.

McArdle, McArdle. (2009). Just Say No to…Drug Companies. The Atlantic. Retrieved November 15, 2009 from http://meganmcardle.theatlantic.com/archives/2009/08/just_say_no_to_drug_companies.php.

Oh, C. (2002). TRIPS and Pharmaceuticals: A Case of Corporate Prof-its Over Public Health. Retrieved April 17, 2008 from: http://www.twnside.org.sg/title/twr120a.htm

Pattison, N., Warren, L., Peck, B., & Clemente, F. (2003). 2002 Drug Industry Profits: Hefty Pharmaceutical Company Margins Dwarf Other Industries. Retrieved April 24, 2008 from: http://www.citizen.org/documents/Pharma_Report.pdf

Petersen, M. & McNeil, D.G. (2000). AIDS Drug Patent Development. Retrieved March 15, 2008 from http://www.hsph.harvard.edu/bioeth-ics/archives/200103/msg00011.html

ResearchInChina. (2009). U.S. Pharmaceutical Industry Report, 2008-2009. Retrieved November 22, 2009 from

http://www.reportlinker.com/p0118600/US-Pharmaceutical-Indus-try-Report-2008- 2009.html.

Santoro, M.A. & Thomas G.M. eds. (2005) Ethics and the Pharmaceuti-cal Industry. New York: Cambridge University Press.

Satyanarayana, K. (2005) TRIPS, Patents & HIV/AIDS Drugs. Retrieved April 16, 2008 from http://findarticles.com/p/articles/mi_qa3867/is_200504/ai_n13638639

Thomas, J.R. (2001). Congressional Research Service, HIV/AIDS Drugs, Patents, and the TRIPS Agreement: Issues and Options. Re-trieved April 16, 2008, from:

http://www.law.umaryland.edu/marshall/crsreports/crsdocuments/RL31066.pdf

UNAIDS. (2008). 2008 Report on the Global AIDS Epidemic. Re-trieved November 15, 2009 from

http://www.unaids.org/en/KnowledgeCentre/HIVData/GlobalRe-port/2008/2008_Global_report.asp

Weber, L. J. (2006) Profits Before People. Bloomington: Indiana Univer-sity Press.

World Health Organization. (2008). Statistical Information System. Retrieved November 15, 2009 from http://www.who.int/whosis/en/

World Intellectual Property Organization (WIPO). (2008). What is Intellectual Property? Retrieved April 24, 2008 from http://www.wipo.int/about-ip/en/

World Trade Organization. (2001). Declaration on the TRIPS Agree-ment and Public Health. Retrieved April 24, 2008 from

http://www.who.int/medicines/areas/policy/tripshealth.pdfYazdanpanah, Yazdan. (2004). Costs associated with combination anti-

retroviral therapy in HIV-infected patients. Journal of Antimicrobial Chemotherapy, 53, 558-561. Retrieve November 15, 2009, from http://jac.oxfordjournals.org/cgi/content/full/53/4/558.

References


lion people in the developing world who currently lack it, it would cost the pharmaceutical industry 21 billion dollars, which amounts to only about 6% of its yearly profits. While the burden of providing universal access to antiretroviral treatment in developing countries should not fall entirely on the pharmaceutical industry, the industry represents an in-fluential entity. It is crucial that the pharmaceutical industry continues to leverage its power and wealth to expand access to affordable antiretrovirals in the developing world.

About the AuthorStephanie Fosbenner is a senior at Lafayette College majoring in neuroscience.

Prof. Stephen Lammers is the faculty sponsor for this submission. He is Professor Emeritus of Religious Stud-ies at Lafayette College.


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Data Sharing in Rare Disease Research: The Benefits and Challenges of Open Access

The notion that insurance companies should have ac-cess to their customers’ genetic information is an issue that has been debated for a long time1. Some proponents claim a lack of principled reason for the restrictive use of DNA sequence information since other indicators of health, such as body mass index (BMI), blood test results or even surgi-cal records are readily accessible. Critics are quick to point out the potential problems of unauthorized use, acquisition and distribution of such information.1 In clinical research, scientists are facing a similar dilemma as they consider the costs of advancing the understanding of human genomic DNA by sharing such data within scientific communi-ties. This must be weighed against the call for prudence in presenting DNA sequence information from patients and donors, often by reducing information to a pertinent mini-mum. As the advent of personalized medicine draws nearer and the value of genetic information steadily climbs, there is an obligation to bridge this divide.

In 2001, the Human Genome Project (HGP) laid out the bare building blocks of life.2 Almost a decade later, on October 14, 2009, researchers at the Salk Institute for Biological Studies published the methylation properties of this blueprint and presented the first complete human methylome. This included methylated sites in the human genome, where gene expression is suppressed by adding a methyl group onto chromosomal DNA.3 This milestone is an important advance in our quest to understanding the inheritable changes in the regulation of gene expression, and is also testimony to how far research institutions have come in adapting data sharing practices. Data sharing poli-cies have been brought under intense scrutiny ever since sequencing technologies have enabled researchers to churn out torrents of high-throughput data. The HapMap proj-ect, a multi-national initiative of scientists from the United States, Canada, United Kingdom, Japan, China and Nige-ria, works to archive chromosomal regions that differ be-tween human individuals.4 It counts on its Ethical, Legal, and Social Implications (ELSI) Group to provide guiding principles in handling and processing DNA samples.4 The success of large-scale genomics endeavors such as the HGP and the HapMap project is highly reliant on well-enforced

data sharing guidelines between industry and academic institutions.2,5 DNA sequencing technology has trickled down to many research institutions as it has become more efficient and affordable in the last four years. Many regu-lations and guidelines have been put in place by funding agencies and publishers to encourage data sharing. Here, we explore some of the triumphs and pitfalls of data sharing policies in place today and how they should be improved.

Data sharing is vital for the advancement of both ba-sic science and clinical therapeutics. Government agen-cies play a fundamental role in establishing standards and streamlining the way in which data sharing is conducted. Research on rare diseases provides insight into the impor-tance of data sharing. A “rare disease” affects 1-in-2000 people, and up to 80% of these diseases have identified genetic origins.6 Patients with rare diseases not only suffer from their conditions, but also from the lack of understand-ing of the disease itself. From this perspective, this area of research benefits a great deal from data sharing; since a rare disease occurs so infrequently, the information derived by pooling a large group of patients with a rare disease studied at various clinical or research institutions is greater than the sum of data derived from individual patients in any one study. This allows more significant comparisons to be per-formed on a disease.

Genomic databases for rare diseases often provide valu-able insight into the human mutations that exist for a spe-cific disease. Data sharing between researchers requires a framework that will provide quality data, while preventing infringement of intellectual property. The Leiden Open Variation Database (LOVD) is one example of a well-curated, open-access database on Duchenne’s muscular dystrophy (DMD). It provides data on genetic variants of the DMD gene alongside variant listings based on patient origin, as well as a database of submitters. Sensitive infor-mation, such as patient information, is also properly anony-mized.7 In maintaining donor patient anonymity, specific strategies have been implemented to eliminate unnecessary features of genomic data that would identify individuals.8 One common practice is to limit the proportion of the ge-nome made available in public databases to a phenotypic

Hok Khim Fam and Bernard C. Lo‡

‡ University of British Columbia, [email protected]

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minimum, so it only includes the necessary mutations in a particular disorder. Identifying this phenotypic minimum requires a balance between preserving patient anonymity by setting the lower limit without limiting usefulness of the data.8 The most conventional means involves sequestering administrative identifiers to de-identify a particular se-quence. This anonymity could be reversed using a key-code maintained by a trusted party.8

Data-sharing policies will have diverse ramifications on how rare disease research will be conducted. The da-ta-sharing policies offered by the National Institutes of Health (NIH) and The Wellcome Trust in the 2003 Fort Lauderdale agreement emphasized the substantial benefits of timely pre-publication release of genomic data.9 By re-quiring grantees to quickly make their raw data available to other investigators, the NIH is encouraging broader and quicker analysis of genomic data from collaborative efforts of multiple research teams with related, but distinct, re-search interests.10 These policies would help overcome the problem of limited patient data in rare disease research. Al-ternatively, allowing the genomic data to stagnate in “proj-ect-specific silos” until narrow analyses have been published would ultimately delay the broad cooperation that fosters progress.10

Despite the benefits of open access, such policies could conflict with privacy rules, such as those described in the US Health Insurance Portability and Accountability Act (HIPAA).8,10 With the growing collection of genomic analyses of biospecimens held in health institutes, armed services, and criminal justice systems, a potential risk exists where DNA markers from a data set could be linked to a specific person.8 Consequently if genomic data is identifi-able, possibly by as little as 30 single nucleotide polymor-phisms, HIPAA privacy rules could reverse any mandate that necessitates open access to such genomic data.8,10 Pri-vacy for rare disease patients and their relatives is under-standably a sensitive issue, since they could face discrimina-tion for insurance and employment.8,11 While the NIH can protect confidentiality from forced disclosure, maintaining anonymity for patients in rare disease research is especially difficult due to the smaller affected population.11

With the prevalence of genetic discrimination and the ambiguity of pre-existing laws, there was an inherent need for new legislation to protect an individual’s genetic information from employment and insurance discrimina-tion. On May 21, 2008, the Genetic Information Non-discriminatory Act (GINA) was signed into law to serve this purpose. GINA represents a critical effort towards the extensive and specific elimination of discrimination based on genetic information. However, despite the enactment of GINA, patients and their families in clinical studies of genetic diseases are still vulnerable to discrimination.12 One limitation with GINA is its failure to extend coverage on life insurance or insurance for disability and long-term

care.12 Furthermore, the law provides a maximum penalty of $500,000 for a violation, creating circumstances where failing to comply with the law becomes an attractive al-ternative if a health condition would cost the insurance company more than that amount over the course of an ill-ness.12 There is also a concern with the employment provi-sions in GINA pertaining to the enforcement of damages entitled to the employee.12 Comparisons have been made to Title VII of the Civil Rights Act of 1964, which pro-hibits race and gender discrimination in federally funded programs because the burden of monetary expenses, time commitments, and psychological stress is placed entirely on the employee to prove that genetic information was used illegally.13 The time and financial costs of pursuing a dis-crimination complaint, in addition to the burdens of a fam-ily member suffering from a rare genetic disorder, can easily become too difficult to cope with. Despite such limitations, GINA represents a firm effort to eliminate genetic discrim-ination, but much of the final implications will depend on how the courts entrusted to interpret this law act.12

Although privacy issues and patient rights are impor-tant concerns that require consideration, they are individ-ual issues that could limit the benefits of sharing genomic information.10 Many ethical assessments of genomic and biomedical projects concentrate on protecting individual needs of patients instead of examining the wider outcome of benefits.10 To adequately address the privacy concerns, there needs to be a strong rapport between researchers and rare disease patient advocacy groups, such as the National Organization for Rare Disorders (NORD) and the Euro-pean Organization for Rare Diseases (Eurodis).5,10,11 These groups help to inform patients who may not understand data-sharing policies about confidentiality rights, propri-etary agreements, and third party usage of genomic data.12 Moreover these advocacy groups give patients a sense of continued involvement with the scientific community by providing updates on standards of care and research de-velopments.12 By directly involving advocacy groups that represent donor interest in drafting policies about data use and sharing, it helps to eliminate the disconnect between researchers and patients that elicits a fear of donor exploi-tation.10,11,12 By creating a supportive environment where patients understand their rights, and measures are taken to protect their genomic information, individuals whose genomic data might be informative can have an altruis-tic interest in sharing potentially identifiable information to maximize scientific benefits.10,12 An accessible network linking the isolated patient data available to specialized in-vestigators and clinicians becomes critical to support effec-tive primary research in rare diseases.

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Data Sharing in Rare Disease Research

1. The Economist. (2007) Genetics, medicine and insurance: Do Not Ask or Do Not Answer? : Retrieved from <http://www.economist.com/sciencetechnology/displaystory.cfm?story_id=E1_JGSJRJP>

2. Venter, C.J. et al. (2001) The Sequence of the Human Genome. Science 291, 1304-1350

3. Lister, R. et al. (2009) Human DNA methylomes at base resolution show widespread epigenomic differences. Nature advance online publication 14 October 2009

4. International HapMap project. (2007) Ethical concerns : Retrieved from <http://hapmap.ncbi.nlm.nih.gov/ethicalconcerns.html.en>

5. The International HapMap Consortium.(2007) A second generation human haplotype map of over 3.1 million SNPs. Nature 449, 851-861.

6. National Organization for Rare Disorders. (2009) Disease Informa-tion from NORD, National Organization for Rare Disorders, Inc. Retrieved from <http://www.rarediseases.org/news/Eurodis_and_NORD>

7. Aartsma-Rus et al. (2006). Entries in the Leiden Duchenne muscular dystrophy mutation database: an overview of mutation types and paradoxical cases that confirm the reading-frame rule. Muscle Nerve 34, 135-144.

8. Lowrance, W.W. and Collins, F.S. (2007) Identifiability in Genomic Research. Science 317, 600-602

9. The Wellcome Trust. (2003) Sharing Data from Large-scale Biological Research Projects: A system of Tripartite Responsibility. Fort Lauder-dale, USA: Retrieved from <http://www.genome.gov/Pages/Research/WellcomeReport0303.pdf>

10. Foster, M.W. and Sharp, R.R. (2007) Share and share alike: deciding how to distribute the scientific and social benefits of genomic data. Nature Reviews: Genetics 8, 633-639

11. Griggs, R.C. et al. (2009) Clinical research for rare disease: Opportu-nities, challenges, and solutions. Molecular Genetics and Metabolism 96, 20-26

12. Erwin, C. (2008) Legal update: living with the Genetic Information Nondiscrimination Act. Genetics in Medicine 10, 869-873

13. Slaughter, L.M. (2008) The Genetic Information Nondiscrimination Act: Why Your Personal Genetics are Still Vulnerable to Discrimina-tion. Surgical Clinics of North America 88, 723-738

14. European Organization for Rare Diseases. (2005) European Confer-ence on Rare Diseases. Luxemborg, EU: Retrieved from <http://www.eurordis.org/IMG/pdf/EN-ECRDtotal-2.pdf>

References

MASTER OF ARTS IN BIOETHICSUniversity of Pittsburgh

Designed for clinicians, lawyers, and students of the humanities and social sciences, this interdisciplinary program emphasizes the philosophi-

cal foundation of bioethics and offers opportunities for clinical experi-ence and in-depth research. This program of the Center for Bioethics

and Health Law and the School of Arts and Sciences allows students to combine study in ethical theory, philosophy and history of medicine,

cultural and gender studies, health law, public health, and social sciences. Students may complete coursework, including clinical practica, in one

calendar year. A thesis is required. Joint JD/MA and MD/MA programs are available. Applications are considered on a rolling basis, beginning

February 1 until August 1 or until the class is filled. Financial assistance may be available to highly qualified applicants who apply early. For

information and application materials, contact: Director of Admissions, Center for Bioethics and Health Law, Suite 300, Medical Arts Building,

3708 Fifth Avenue, Pittsburgh, PA 15213; [email protected]; 412-647-5700; see also www.pitt.edu/~bioethic.

About the AuthorHoh Khim Fam and Bernard Lo are seniors at the Univer-sity of British Columbia majoring in Biotechnology.

Dr. William Ramey is the faculty sponsor for this submis-sion. He is the Senior Undergraduate Program Advisor in the Department of Microbiology and Immunology at the University of British Columbia.

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The Expressivity of Prenatal Testing and Selective Abortion for Disability

IntroductionAccording to the expressivist objection to prenatal di-

agnosis put forth within the disability critique, the deci-sion to abort a fetus that is found to have a disability sends a message to individuals with disabilities that life with a disability is not worth living. The expressivity of this ac-tion is controversial, and brings us to ask: how does an ac-tion communicate a message, and does this action send the message of discrimination as purported? In this paper I will discuss the idea of expressivity of prenatal testing and selective abortion, as well as several theories of communi-cation. I argue that a woman’s choice to abort a fetus with disabilities does not explicitly send such a message.

Prenatal Testing and Selective AbortionPrenatal tests are used to diagnose many different dis-

orders and disabilities, the knowledge of which can allow prospective parents to make decisions regarding the preg-nancy, delivery, and life of the future child. The diagnos-tic procedures that are available are varied, and can detect Tay-Sach’s, neural tube disorders, Down syndrome, chro-mosomal anomalies, and other disorders. Though some disorders identified by prenatal testing may be satisfactorily treated after birth with medication, diet or surgery; many others require more extensive care and treatment. Many disorders involve great physical pain, early mortality, and expensive treatment; and after prenatal diagnosis of the disorder, there is nothing that can be done until the fetus is born. Hence, a woman who undergoes prenatal testing and finds that her child has a disability often finds that her options are limited to taking the pregnancy to term or aborting the fetus. The morality of this practice is found to be questionable by many disability rights activists and scholars, bioethicists, and individuals with disability.

The Disability CritiqueAccording to the disability critique the use of prena-

tal diagnosis requires careful scrutiny for two reasons: the choice to use prenatal testing is based upon misconceptions about disability and the use of selective abortion to target fetuses with disabilities is thus morally problematic. Cen-tral to the first claim is the argument made by Asch that prenatal testing allows disability to stand in for the whole world of possibilities for the child-to-be (Parens & Asch, 2007, p. 15). Asch writes that prenatal testing followed by selective abortion relies upon first impressions, and “that first impression includes a decision never to learn about the rest of who that embryo or fetus could become after its birth” (Asch, 2007, p. 235). According to this argument, the choices made by women who receive positive diagno-ses are incomplete in that they are made with only limited knowledge about specific disabilities and the possibility of leading a fulfilling life with disability. These choices are instead colored by societal views that regard disability as incompatible with a successful and happy life, views which are not always countered by medical professionals.

According to the second claim, aborting a fetus with a disability sends a discriminatory and hurtful message to individuals with disabilities, which implies that their lives are not worth living (Parens & Asch, 2007, p. 13). This “expressivist argument” draws upon the idea of this child or any child in claiming that selective abortion of a fetus, and even the choice to undergo prenatal testing, conveys the clear statement that “we say we want a child, but we do not want this child” (Kittay, 2007, p. 183). The expressivist argument becomes particularly interesting if one considers how selectively aborting a fetus could convey the message “we do not want more of your kind” to others with dis-abilities. “Just how does an abortion ‘indicate’ that the child

Kiersten Batzli‡

Prenatal testing for disability is sometimes perceived by individuals with disabilities to send a message of intolerance. The expressivity of this act is compounded by the fact that prenatal diagnosis of a disability is often followed by the abortion of the fetus. Individuals with disabilities feel that these decisions are made as a rejection of the possibility of life with disability. Whether or not this message is actually sent by the action is a point of contention among prominent philosophers, bioethicists, disability scholars and activists. Adrianne Asch, Eva Feder Kittay, and James Lindemann nel-son are among those who weigh in on the subject, evaluating the likelihood that a message is sent as a result of these actions based on various theories of communication. The most common conclusion reached is that the perceived message of discrimination against people with disabilities cannot be traced to the individual women who decide to undergo prenatal testing or to abort a fetus with a disability.

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‡ American University, [email protected]


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is unacceptable?” James Lindemann Nelson asks (Nelson, 2007, p. 198).

Women who choose to undergo prenatal testing may have a host of reasons for choosing to test. It is difficult, if not impossible, to determine what these reasons are and from them conclude what message is being sent to indi-viduals with disabilities. According to Asch, “acts (and the messages they convey) rarely have either a single motiva-tion or meaning” (Asch, 2007, p. 14). The disability critique does not make a distinction between the various reasons why women may choose to use prenatal diagnosis or abort a fetus with disabilities. Within the disability critique there is no perceivable difference between the actions of a woman who aborts the fetus because she does not believe that individuals with disabilities can have a happy life and the actions of a woman who aborts a fetus with disabilities because she knows that she cannot afford to take adequate care of the child. Although these motivations seem very different, according to the disability critique, both show in-tolerance for disability and an apathy towards a previously wanted child based upon a single characteristic of the fetus.

Kittay also wonders whether and how we can consider the act of selectively aborting a fetus to be a “saying” (Kit-tay, 2007, p. 183). In the article titled “On the Expressivity and Ethics of Selective Abortion for Disability: Conversa-tions with My Son,” she applies the models of communica-tion introduced by linguist H.P. Grice and philosopher of language Roman Jakobson to selective abortion in order to determine whether such an act can send a message.

grice’s Requirements for Communication of a Message

Grice’s model makes three demands of an action in or-der to qualify as communication of a message. The three demands are:

1) U, the utterer, means something by doing x, if by doing x U intended to evoke a response from A, the audience. 2) U must intend for A to recognize that by doing x, U intended to produce the response in A. 3) The action may qualify as a message if U intended that A’s re-alization that U is trying to provoke A would cause A to respond (Kittay, 2007, p. 184).

This model depends on U’s intention to cause a response in A by his or her actions as well as U’s intention that A should recognize that he is being provoked. If we are to as-sume that in the case of selective abortion the woman is the utterer of the message this model quickly falls apart. It is difficult to imagine that each woman who chooses to abort a fetus with disabilities intends to cause harm to individuals with disabilities. Kittay contends that if we deduce from the action of the woman that she doesn’t value the life of an individual with disabilities, we draw this conclusion “not from the message sent but something inferred from action taken” (Kittay, 2007, p. 185). The inclusion of intention as such a large part of this model of communication makes it difficult to apply to this situation.

Jakobson Model of Communication

The model of communication developed by Roman Jakobson is composed of six elements which define the communication of a message. The first two requirements of communication in this model are an addresser and an addressee (Kittay, 2007, p. 185). In the case of selective abortion for disability, the addresser is the woman and the addressees are the individuals with disabilities, or perhaps society (Kittay, 2007, p. 186). The third requirement is an open channel of communication between the addresser and addressee, and fourth is a message to be sent from the addresser to the addressee. The fifth element of commu-nication is the context in which the message will be sent, and the sixth element is the code—the means by which the message is understood by both the addresser and addressee (Kittay, 2007, p. 185). The code must be the social practices and conventions in order to allow us to consider the case of selective abortion (Kittay, 2007, p. 186).

Kittay finds that the Jakobson model of communica-tion, like the Gricean account, does not give a good repre-sentation of the message that the disability critique claims is sent by the abortion of a fetus with disabilities. It is unclear that there is ever a channel of communication be-tween the woman and society which can be considered to be open. The “code” by which both parties are to un-derstand the message seems to be missing, for even if it is claimed that social customs compose the code, these prac-tices do not seem to assign to the act of abortion a clear meaning which could be understood by all (Kittay, 2007, p. 187). Lastly, the context in which the communication of the message takes place can be considered to be society, with its history of discrimination of persons with disabili-ties. It is unclear whether the purportedly received message would be changed if the context were to be changed, but I suspect that it would be. At best we have a “degraded” form of communication, and “if selective abortion is an act of communication in which the message arrives in a de-graded form,” writes Kittay, “then I fail to see how it can provide grounds for any ethical judgments or moral (much less legal) prescriptions” (Kittay, 2007, p. 186). The message sent by selective abortion is ambiguous when it is viewed through the constructs of communication considered here (Kittay, 2007, p. 190).

Buchanan Model of CommunicationJames Lindemann Nelson considers another communi-

cation model which is proposed by Allen Buchanan. This model relies on only two conditions which the addresser must meet. The first is that they must have the beliefs which are supposed to be expressed by the action. The sec-ond is that those beliefs must have a role in the person’s decision making in coming to the decision to make the ac-tion. If these two conditions are met, the person’s action will convey a meaning (Nelson, 2007, p. 198). Both Nelson and Buchanan, however, are unconvinced that a woman who chooses to abort a fetus after prenatal diagnosis meets these two conditions.

Nelson believes that “human actions can express mean-

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ings, as well as have casual consequences, and people often care deeply about what those meanings are” (Nelson, 2007, p. 196). He writes of his personal experience of choosing to be sterilized after having several children and worrying about what his action would “say” to his children. He did not worry that his choice was motivated by belief that chil-dren or even more children are bad and should not be born, beliefs which he must have and his action must show ac-cording to Buchanan’s theory. He writes that though he was concerned about what his action might express to his children, “I was not wondering whether I was necessar-ily or solely motivated by objectionable attitudes towards my children…I was concerned about what my contingent motivations and reasons might be, particularly about the possible motivations and reasons that might not be alto-gether manifest to me” (Nelson, 2007, p. 200). According to Nelson, a message or meaning can be transmitted with-out the intention or explicit knowledge of the individual. However, Nelson hesitates to assign the blame for even this unintentional message to individual women who choose to prenatally test for and abort fetuses with disabilities.

The Message ReceivedNelson, like Kittay, considers that there may be other

ways to construct the message which might allow for the transmission of the perceived message to society or to in-dividuals with disabilities. The action of choosing to have an abortion may not be the only action through which to send a message. Nelson postulates that “the offer of prena-tal testing itself is the message and the institutional struc-tures through which the offer is made constitute the sender of the message.” This practice can be seen to “express a clear and plainly objectionable meaning, one that needs to be dealt with directly by trying to stop or at least restructure such practices” (Nelson, 2007, p. 207-8).

Nancy Press also questions why the action that sends the message to individuals with disabilities is assumed to be the choice to abort a fetus with a disability. Like Kittay and Nelson, Press also concludes that perhaps we should con-sider the routine offer of prenatal testing to be the action which sends the message of discrimination. She writes that the “strongest support for the expressivist argument comes not from an examination of the choices made by individu-als, but rather by considering the meanings and cultural tensions of the choices made available by the increasing number and routinization of prenatal testing for a growing number of diseases and conditions” (Press, 2007, p. 217).

Press, Kittay and Nelson all reach the tentative conclu-sion that we may not be able to place blame for the trans-mission of a discriminatory message of on the women who decide to abort. Rather, they contend that we should con-sider something larger and more abstract, such as the dis-tribution and availability of prenatal diagnostic tests to be the real culprit, which disseminates a discriminatory mes-sage towards individuals with disability. We should look perhaps to the practice of obtaining prenatal testing as if it were a part of regular prenatal care and the consequent

contemplation of abortion of fetuses with disabilities as the source of a message rather than the individual cases. While this seems more palatable, it points to a larger problem, al-beit a problem with potential solutions.

Society as the Message SenderMarsha Saxton offers an alternative explanation of the

origins of the message of intolerance. Though the message may stem from the action of choosing to use available pre-natal testing and to abort a fetus with disabilities, Saxton suggests that the message is only perceived in such nega-tive ways due to the societal tendencies of discrimination toward individuals with disabilities. This draws upon the idea that social context of messages is incredibly important to the way that they are understood. The social judgment theory, introduced by Muzafer Sherif suggests that the im-portance of context is even more personally bound. The ways in which people make judgments are, according to this theory, based upon “anchors” or reference points which are internal and based upon previous experience. The more important that the issue is to the ego the more strongly the reaction to it will be influenced by these “anchors” of previ-ous experience. Issues of extreme personal relevance will be responded to in a much different way than issues which are judged to be of less importance to the ego (Littlejohn, 2002, p. 131). In this case, individuals with disabilities react to the message based upon their previous experience with societal discrimination.

This seems to label not only the widespread use of pre-natal diagnosis and selective abortion of fetuses with dis-ability as the culprit of the messages, but also society. Other discriminatory practices within society may cause individu-als with disabilities to view a potentially neutral message sent by a woman choosing to abort a fetus with a disability as harmful and expressing a judgment that life with dis-ability is not worth living.

ConclusionsSuch attempts as those made by Kittay, Nelson, Press,

and Saxton to analyze the origin of the message perceived by individuals with disabilities are important as they may point us towards practices that might be changed in or-der to lessen or eliminate the message of discrimination. Currently, it is unclear where this message comes from, as it seems unlikely that a woman who privately chooses to have an abortion would wish to send a public message to individuals with disabilities or to society. It seems even less likely that a woman, even if she held those beliefs, would want to send such a message. It is far more likely that the discriminatory message stems from the widespread avail-ability of prenatal testing.

Women have many reasons for undergoing testing and for choosing to abort a fetus with a disability. Regardless of her reason for doing so, it is hard to escape from the any child versus this child, claim put forth by Asch. Any reason for aborting a fetus based upon information gained from prenatal diagnosis must be traced back to the single characteristic of the fetus which is discovered through

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the use of this test, namely that the fetus has a disability. However, the reason may be traced even farther back to reflect the routinization of prenatal diagnosis that makes it seem to be a natural part of prenatal care for a fetus with a disability, abortion will be heavily considered as the best available option, as well as to the discriminatory attitudes of society towards individuals with disabilities and families trying to raise and care for children with disabilities. It is not reprehensible that a woman should choose to abort a fetus with a disability if she lacks the resources to do so and would not be supplied with the necessary resources by society. Her decision reflects both the prominence of pre-natal testing as well as the attitudes put forth by society about people with disabilities, and inasmuch she is com-plicit to the societal discrimination, though perhaps not by choice. Kittay sums this up eloquently, writing “perhaps it is more appropriate to question how the larger society val-ues or devalues disabled life—by looking at the resources it withholds or devotes to children with disabilities and their

families—than to impute disregard for the value of the life of disabled persons to the pregnant woman who tests for and aborts a fetus with impairments” (Kittay, 2007, p. 178). It is time that we stop attempting to trace this message of discrimination and non-value to the actions of individual women, and begin to look for its source within the practices of society, including perhaps, the widespread availability of prenatal testing for disability.

Asch, A. (2002). Prenatal Diagnosis and Selective Abortion: A Challenge to Practice and Policy. In J.S. Alper, C. Ard, A. Asch, J. Beckwith, P. Conrad, & L. N. Geller (Ed.), The Double-Edged Helix: Social Im-plications of Genetics in a Diverse Society (pp. 123-150). Baltimore: Johns Hopkins UP.

Kittay, E.F., & Kittay, L. (2007). On the Expressivity and Ethics of Selective Abortion for Disability: Conversations with My Son. In E. Parens & A. Asch (Ed.), Prenatal Testing and Disability Rights (pp. 165-195). Washington, DC: Georgetown UP.

Littlejohn, S.W. (2002). Theories of Human Communication. Stamford: Wadsworth Group, Thomson Learning, Inc.

Nelson, J. L. (2007). The Meaning of the Act: Reflections on the Expres-sive Force of Reproductive Decision Making and Policies. In E. Parens & A. Asch (Ed.), Prenatal Testing and Disability Rights (pp. 196-213). Washington, DC: Georgetown UP.

Parens, E., & A. Asch (2007). The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations. In E. Parens & A. Asch (Ed.), Prenatal Testing and Disability Rights (pp. 3-43). Washington, DC: Georgetown UP.

Press, Nancy (2007). Assessing the Expressive Character of Prenatal Testing: The Choices Made or the Choices Made Available? In E. Parens & A. Asch (Ed.), Prenatal Testing and Disability Rights (Pp. 214-233). Washington, DC: Georgetown UP.

Saxton, Marsha (2007). Why Members of the Disability Community Oppose Prenatal Diagnosis and Selective Abortion. In E. Parens & A. Asch (Ed.), Prenatal Testing and Disability Rights (pp. 147-164). Washington, DC: Georgetown UP.

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