A Memorable Weekend at the "Bioethics in the New Millennium" Conference
by Betty Chan
It was mid-October when I received an e-mail from my Cell Biology professor concerning a bioethics conference at Princeton University. Dr. Ian Wilmut, known as the "guy who cloned Dolly," was to speak at the conference, and I would have to write an application essay about my experiences with bioethics. Realizing that I had always concentrated on the technical aspects of biomedical research and was only vaguely aware of some of the philosophical and ethical issues, I was really looking forward to attending the conference.
At the end of February, I was one of 300 students representing 92 schools and 37 states to attend the first-ever international undergraduate bioethics conference entitled "Bioethics in the New Millennium." Over the next two days, 26 and 27 February, I sat in on lectures and panel discussions, and I participated in several debate sessions and policy forums. I heard some of the most chilling aspects of biomedical research which I would never acquire from my science courses. That weekend was, indeed, one of the most exciting and memorable experiences of my life.
The conference commenced with a lecture from Francis Collins, Director of the National Human Genome Research Institute at the National Institutes of Health (NIH). Collins spoke about some of the promising uses that the Human Genome Project has to offer, but he also discussed the implications that are rapidly emerging as the project nears its completion. (See separate story about Collins' talk.)
After Collins' lecture, the conference participants were broken up into small discussion groups. I was scheduled for the precept called "Traps of the Past: Will We Avoid Them?" and the facilitator was Lois Wingerson. Wingerson is a science-journalist who contributed to Discover, New Scientist, Science News, Economist, Newsday, and The New York Times. She also recently published two books about genetic research, Mapping our Genes (1990) and Unnatural Selection (1998). The discussion focused on eugenics, which was the only topic that I associated with bioethics prior to the conference. The subject of concentration camps during World War II was brought up. Wingerson, having done research on this topic for her books, shared some of her most chilling findings with us. When the people involved with the camps were questioned about the morality of their actions, many could not see what was wrong with their behavior. In 1935, Otmar von Vershuer, a professor at Frankfurt University Institute of Hereditary Biology and Racial Hygiene, said "It is difficult for a racial hygienist to define a right path between the interests of the individual and the interests of the state." Wingerson emphasized that eugenics is and will always be an issue whenever human genetics is discussed; it is not something that happened and was over with after World War II. Another important point was that Germans were not the only ones who practiced eugenics. According to Wingerson, there are two forms of eugenics. The Germans practiced negative eugenics, the discouraging of the survival of "unfit" genotypes. Positive eugenics, or the encouraging of the breeding of "fit" genotypes, was practiced by no other than the Americans. To extrapolate this further, Wingerson opened the possibilities to other places in the world where eugenics was, or even continued, to be practiced.
After a lunch, I attended a panel discussion entitled "Bioethics and the Media: The Influence of Science Journalism on Popular Ethics." The five speakers shared their experiences with the media and offered some advice on dealing with the media. John Arras, a professor of Biomedical Ethics and Philosophy at the University of Virginia, criticized journalists' tendencies to exploit the image of a human being as the "poor suffering patient" and to present information as snapshots rather than a coherent film to the public. Francis Collins, who had spoken earlier that morning, was more sympathetic, suggesting that a lot of scientific information is dumped into the hands of an average science reporter, and as a result, data can be misinterpreted. Norman Fost and Bonnie Steinbock, both authors of publications on ethical issues in genetics, focused on the idea that reporters are more interested in opinions rather than facts. Lois Wingerson noted that while the web provides a seemingly infinite amount of information, it is done in a rather "uncleaned" process. Not all the sites have been sifted through and evaluated for accuracy. Before I had any time to wonder about the validity of some of the sites and articles I used as references for my studies, we were broken up into groups of 20 for a session of two mini-debates.
In these debates, we were given a situation in which a sperm bank was faced with dilemmas of inseminating a single alcoholic mother and inseminating a couple who wants sperm from a more superior male. The latter part of the afternoon was spent on discussing ethical issues, reproductive decision-making, eugenics, and other issues that arise as we witness the advances in modern reproductive technology.
After dinner, I attended the lecture given by Ian Wilmut. When he appeared on the stage, the lecture hall exploded with thunderous applause. After briefly describing the technical methods in accomplishing his cloning of Dolly, Wilmut spent the majority of the lecture talking about some of the medical opportunities provided by cloning research, and he explored the implications for each. (See separate story on Wilmut's talk for more details.) After Wilmut's lecture, some of the other participants and I met in a dorm room and spent some time getting to know one another and discussing some of the topics and concerns raised throughout the day. The degree of interest that my peers had on the subject of bioethics was astounding. Apparently, there was a lot more to biomedical research than just learning the technical details.
The focus of the next day took on a slightly different view of bioethics. Whereas Friday was primarily spent on bioethics in medicine, lectures and discussions on Saturday emphasized bioethics in industries and public policies. The morning's first lecture was by Stephen Fodor, President and Chief Executive Office of Affymetrix. Fodor spoke about the opportunities to technological companies that the Human Genome Project was providing. He introduced the Gene Chip that his company was producing, and he mentioned some of the advances this new technology was making in biomedical research. Each of these chips is designed to carry out poplymorphism screening, which is the process of locating differences in the DNA sequence. On average, humans differ by one base pair for every 700, which makes us unique from each other. Fodor announced that polymorphism screening is an interest to two specific fields: 1) pharmocogenomics, a study of physiological response to pharmaceuticals, and 2) pharmocogenetics, a study of genetic variation in patient response to pharmaceuticals. The capacity of the chips is impressive. Similar to a CD-ROM, a chip can hold massive amount of information. Fodor predicted that one can run a genetic tree map on the chip in the near future. He also stressed regulation of this new technology. He claimed that it is not technology that raises ethical concerns, but how one desires to use it.
The precept to which I was assigned following Fodor's lecture was "International Collaborative Research: Are Current Protections for Human Subjects Adequate?" facilitated by Ruth Macklin. Macklin is currently Vice President of the International Association of Bioethics, member of the UNAIDS Ethical Review Committee, and also member of the Recombinant DNA Advisory Committee of the NIH. Her credentials also include over 160 publications concerning bioethics, law, medicine, philosophy, and social sciences. Her extensive background proved to be useful in creating a realistic model of international research in a step-by-step process. To summarize the model, a list of ethical rules protecting human rights is generated by both the sponsoring country and host country involved with international research. According to Macklin, it was interesting to note that all medical schools, except those in the United States, placed an emphasis on studies on tropical diseases in their curriculum. This sprang from interests of these sponsoring countries in colonization. Macklin spent a majority of the precept discussing the current protections available to host countries. These protections include respect of human rights, which may be defined differently for each country, education for researchers in a process called capacity building on the physical and biological risks of the research and the welfare of the subjects, requirement that scientists regularly submit data to the Data Safety Monitoring Board committee, and a fair distribution of the benefits and burdens of the project.
After lunch, I attended a panel discussion called "The Ethics of Profit: The Interplay of Bioethics and Industry." Curious to see how bioethics are applied to pharmaceuticals as biomedical research is rapidly advancing, I found the discussion to be very interesting. Roy Vagelos, former Chief Executive Officer of Merck & Co, Inc., spoke about the process behind pricing a pharmaceutical product. The cost and effort spent in laboratory research, cost of producing the product, value of the product in keeping the patient alive and healthy, and what is out there on the market are all factors in determining the price of a product. According to Vagelos, mergers often result to pool money for this long and expensive process. Vagelos also posed the following question: "Is it fair for industries to take ideas and products from researchers and universities and make a profit?" His answer was clearly "Yes." Why? Because when industries make a profit, they are taxed by the government, and the money goes back as funding for universities and research centers such as the NIH. This cycle monitors the comfortable relationship between industries and universities. Leon Rosenberg, former President of the Pharmaceutical Research Institute at Bristol-Myers-Squibb Company, spoke briefly about this relationship between pharmaceutical industries and universities. The relationship, however, between the Food and Drug Administration and industries is a hurdle. Pharmaceuticals spend a lot of time and money pushing products on the market. Incentives are needed, and that is to make a profit. This is important when it comes to providing third world countries which cannot pay for the drugs. In addition, companies often receive messages on a regular basis how so-and-so will die without the drug, and incentives to respond to these urgencies are also needed.
Following the panel discussion, we were assigned in groups to debate a situation based on the incident in which HIV placebos were given to pregnant women in a third world country to combat perinatal infant transmission. The placebos were given over a short period of time, and the women were not informed that they were placebos. For the next two hours, the ethics behind placebo-controlled trials in third world countries were discussed.
Roy Vagelos also gave the closing lecture of the conference. In a very entertaining way he shared with the audience some of his successes while with Merck. Perhaps his most rewarding experience was curing a population of 18 million in sub-Saharan Africa from river blindness, a parasitic disease. In the process, Merck was faced with a dilemma between losing profits and saving 18 million people. In the end, Vagelos displayed great pride in giving the drug away to a developing world. He said, "Medicines are for people, not for profits."
My knowledge of bioethics had clearly expanded from where I was before the conference. Although in the end I was fearful and overwhelmed by what biomedical researchers are encountering outside the university, the conference provided a safe haven to start learning how to deal some of these issues. I could not wait to go back and share with my friends and classmates the importance of bioethical issues these days in addition to learning all the technical details.
For reviews and articles on the conference, see http://www.princeton.edu/~bioethic/conference/.
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