by
Abstract
At the first international student-organized undergraduate bioethics conference, keynote speaker Francis Collins challenged listeners to "go out and meet every dilemma that is put in front of you." So they did.
Ian Wilmut, introduced as "the guy who cloned the sheep," was greeted with yells and whistles as well as applause at the entirely student-organized conference "Bioethics in the New Millennium," held at Princeton University on February 26, 1999. The undergraduates managed not only to entice Wilmut, of Scotland's Roslin Institute, to come speak, but also to convince Francis Collins, director of the National Human Genome Research Institute, to give a keynote lecture. Other respected scientists and bioethicists from Princeton and around the country also donated their time to the conference. Covering the issues at the intersection of science and ethics, the conference participants took on the Human Genome Project and its ethical implications, the issue of bioethics and the media, reproductive ethics, and the implications of cloning.
Billed as the first-ever international undergraduate bioethics conference, the event drew 300 students from 92 schools in 37 states. Not the usual stuffy convention-center conference, with vendors selling three-dollar coffee and muffins, this one had a decidedly student feel. Pizza and Cokes were provided for lunch, and an afternoon break was complete with cookies. Keynote lectures and panel discussions were given in a large lecture room with wooden desks, and were simulcast into two additional rooms. Harold Shapiro, president of Princeton and chairman of the National Bioethics Advisory Commission, opened the conference with a prediction that the current wave of interest in bioethics spawned by the cloning of Dolly will continue, and will be accompanied by anxiety about the applications of new discoveries. But instead of fearing this outcome, Shapiro embraces it, saying, "I look forward to an era of more and more anxiety because I think it's going to be more and more productive."
Collins delivered his keynote lecture to an auditorium filled with neatly
dressed, notebook-toting students. His opening quip, "I'm not a bioethicist,
but maybe I'm an animal model," was topped by another statement a few
minutes later: "I'm sorry to say that here at Princeton there are no perfect
genetic specimens," said Collins. "Maybe at Yale." With this, Collins
quickly put the Human Genome Project in a personal light, revealing that
current estimates say everyone carries anywhere from five to fifty
significant genetic flaws, and that virtually all diseases - even AIDS -
have a genetic component.
Collins' main concerns are about the uses of the information coming out of
genomics research: finding effective legislative solutions to genetic
discrimination, deciding if genetic tests need oversight, and determining if
health care providers and the general public can become literate in time to
use the information wisely. He is also concerned about arriving at a
consensus about the limits of genetic testing and treatment, saying, "Do not
fool yourself: diseases do not come in a severe form and then there's this
big gap and there are traits [like intelligence and height] over there on
the other side. It's a continuum." Additionally, Collins warned against
falling into the "Genes-R-Us" mentality, prevalent in the media, that we are
all "hapless victims of A, C, G, and T and nothing else."
An afternoon panel discussion entitled "Bioethics and the Media" picked up
on this theme, although last-minute cancellations by two science journalists
made the panel a bit short on the media end. The discussion started out with
the media taking a beating, as ethicist John Arras of the University of
Virginia described being outrageously misquoted by the press. Ethicist
Bonnie Steinbock of the University of
Albany of the State University of New York advised students to prepare
sound bites instead of relying on interviewers to ask good questions.
Physician and ethicist Norman Fost of the University of
Wisconsin said that the press's tendency to seek bioethicists' opinions
on cloning is misguided. In Fost's opinion, what a bioethicist thinks is
irrelevant - no more or less important than what a bus driver thinks.
Instead, says Fost, "If there's a reason to call a bioethicist, it's to get
their insight into what the issues are, what people want to be thinking
about that maybe they're not, what are the analogies or dis-analogies with
other things."
The voices of the next generation of bioethicists were also heard at the conference. Taking Collins' challenge to "go out and meet every dilemma that is put in front of you," in between lectures and panel discussions the students broke into small groups and grappled with real issues. Lee Silver, a professor of molecular biology and neuroscience at Princeton whose research focuses on genetic contributions to behavior and emotionality, led a group of students to consider the possible uses and ethics of germ-line genetic engineering. At first reserved, the students were soon challenging one another and clamoring for their views to be heard while Silver sat back and listened. Later, another group came together under Silver's direction to debate the ethics of a theoretical future technology - joining two eggs to make an embryo (no sperm necessary) so that two lesbians can have a child together. Originally split 10 pro and 4 con on the issue, after the debate the group voted 7-7. All of the pros who had been arguing con against their actual opinion had changed their minds.
The students' conversations continued outside the lecture hall and debating
rooms, onto the sidewalk, and at lunch. By the time Wilmut's evening keynote
lecture came around, spirits were high, and the packed auditorium was
buzzing with excitement. After a pep-rally introduction, Wilmut walked out
onto the stage and put up his first slide, Dolly and her lamb, to a chorus
of "Awww . . ." Wilmut opened his talk by cautioning against jumping too far
too fast. "Far too many of the discussions seem to me to jump straight from
the facts that we've produced a small number of clones . . . to let's go
ahead and use it," said Wilmut, "and there's this enormous gap in the
middle." His talk centered on opportunities that could come out of cloning
technology, including genetic engineering, disease treatments using human
undifferentiated cells, and xenotransplantation, as well as human cloning.
Advocating strict regulation on future research, Wilmut emphasized that much debate is needed of these issues, saying, "I profoundly believe that is very important that we go through this exercise." When asked if he and the other scientists involved were aware of the implications of their work when they began, Wilmut admitted, "What's happened is that nuclear transfer ended up being more powerful than we expected." A scientist catapulted into the bioethics arena by his cloning success, Wilmut now has thought carefully about the implications of his research. However, as research in itself can be an all-consuming activity, many scientists are truly unprepared to meaningfully struggle with the deeper ethical implications of their work. Energetic bioethicists of the new millennium will be required to grapple with the ever-growing assortment of ethical questions springing from the science of the new millennium.
Amy Hodson Thompson is currently a graduate student in the Writing Seminars at Johns Hopkins University. After earning a Ph.D. in microbiology and immunology, she jumped off of the research track into a science-writing career.
Caleb Brown is an illustrator and biologist living in Montana. By day he drives a delivery van, and by night he draws pictures with his computer.
The Bioethics Forum - the creator and host of the Bioethics in the New Millennium conference, this Princeton University student organization was founded to provide the opportunity for discussing contemporary bioethics issues.
MIT-Harvard Conference on Genetic Technology and Society - a similar conference, also student-organized.
National Reference Center for Bioethics Literature - books, journals, newspaper articles, legal materials, regulations, codes, government publications, and other relevant documents concerned with issues in biomedical and professional ethics. Little online content.
Genomic Medicine: Internet Resources for Medical Genetics - annotated list of sites for physicians, patients, and the general public. From the Journal of the American Medical Association.
Office of Genetics and Disease Prevention - provides current information on the impact of human genetic research and the Human Genome Project on public health and disease prevention. From the Centers for Disease Control and Prevention.
Human Genome Project Information - very useful for those interested in genome research, no matter what their background. Includes the Primer on Molecular Genetics and access to the newsletter Human Genome News; for scientists, there is the more technical Research in Progress section. From Oak Ridge National Laboratory.
Access Excellence: About Biotech: Issues - series of articles covering topics related to the Human Genome Project. The sections State of the Art and Principles of Genetic Engineering, which describe the techniques used in genetic research, will be particularly useful for those without a background in molecular biology.
American Society of Gene Therapy - promotes research and education related to gene therapy. The site has membership and meeting information as well as a list of the society's scientific committees, and provides links to research centers, people, and companies involved in functional genomics.