Ethical challenges and choices resulting from genomics are discussed

By Jeff Evans '01 and Blaine P. Friedlander Jr.

About 100 faculty, students, staff and community leaders gathered for a two-day Cornell conference on "Genomics Futures: Ethical Challenges, Social Choices and the University" in Clark Hall Nov. 17 and 18.

Professor Stephen Tanksley, chair of the Cornell Genomics Initiative, discusses the work of the initiative's Ethical, Legal and Social Issues Committee during the Genomics Futures conference Nov. 17 in 700 Clark Hall. Barry DeLibero/University Photography

Stephen Hilgartner, Cornell assistant professor of science and technology studies and chair of the Ethical Legal and Social Issues Committee of the Cornell Genomics Initiative, said the conference was designed to help "congeal the intellectual community around these issues. We want to be multi-disciplinary across the colleges," he said. "These issues are so complex, this is just the first part of a campaign to build studies of the social and ethical aspects of the new biology into the thinking around the university."

Bruce Lewenstein, Cornell associate professor of communication, said that Cornell's "social scientists and humanists will have input into what the genomics scientists do by helping to frame the issues."

About a dozen experts, many of whom are Cornell faculty members, spoke on the different ramifications of genetic ethical issues. The topics included genetic property, human identity, research needs, and decision-making and governance. Daniel J. Kevles, a professor of science history at the California Institute of Technology, gave the conference's keynote address Nov. 18 on "Eugenics, the Genome and Human Rights."

Kevles' speech reviewed the history of the eugenics movement (whose advocates proposed "improving" the human race through the control of hereditary factors in mating) as it occurred in many places worldwide beyond Nazi Germany. He then asked whether the current biological revolution could provide a new set of possibilities for the reappearance, in another form, of eugenics.

"Who can say that the power of the human genome will be used only for the avoidance of hereditary illnesses?" asked Kevles. However, he concluded that a modern day eugenics movement is unlikely. "On the whole I think that publicly mandated eugenics -- positive or especially negative -- seems very unlikely here in the West, given at least our contemporary strong commitment to civil liberties
and individual human rights."

During a session on genetic property, chaired by Professor Michele Moody-Adams, director of Cornell's Program on Ethics and Public Life, Judith Tsipis of the Genetic Counseling Center at Brandeis University described her experiences with Canavan disease, a rare recessive disorder of the central nervous system, and the patenting of the gene behind the disease by Miami Children's Hospital. The hospital carried out research using samples from affected families, but it never asked for consent for the use of the gene samples from the families, Tsipis said, and the studies were not carried out as well as they should have been. Still, the hospital, she said, has been vigorously enforcing "the intellectual property rights to carrier, pregnancy and patient DNA tests for Canavan disease mutations" through restrictive licensing agreements and high, fixed royalties.

Families with the disease gave their blood, skin, urine and autopsy samples to the hospital so that the gene could be isolated, Tsipis said. "However," she said, "throughout all of this research, there was no consent ever -- verbal or written -- regarding the use of the genes that would be made, isolated from the DNA of either ourselves or our children. There was never any mention of patents or marketing. There was nothing like that." Her group, the Canavan Disease Screening Consortium, would like, at least, she said, to see the number of labs licensed to do Canavan testing maximized and the cost of the testing minimized.

Andrew Stirling of the Science Policy Research Unit of the University of Sussex, England, spoke about different approaches in genetics technology assessment. Using genetically modified foods as an example, Stirling said that estimates of risks and benefits are laden with social values and ethical ideas. The question our society must answer, he said, is -- is it more important to prove that genetically modified food is safe before using it, or to prove that it is not safe before restricting its use?