ISSUES: WHEN ETHICISTS TURN THE MICROSCOPE ON GENETICISTS By Roger Segelken

While biological scientists study genetics, social scientists are studying the biological scientists. And what they see are researchers grappling not only with narrow, technical matters but also with a complex social world. Genome scientists face challenging questions about how to coordinate teams of researchers, who will own intellectual property and how genetic technologies should be used. "Genetics research is a fascinating enterprise to scholars interested in the social aspects of science," says Stephen Hilgartner, an assistant professor of science and technology studies at Cornell. "This field of biology is an excellent Ôlaboratory' for examining how scientists do their science, how social choices shape new technologies and how science and society interact." Scientists conducting genetics research at Cornell and elsewhere should expect to encounter a steady stream of ethical issues, Hilgartner says. Some of the most important ethical problems, he predicts, will concern protecting the privacy of genetic information about individuals. Major dilemmas will also surround genetic testing in medicine and the uses of genetics in reproductive technology. Hilgartner is one of a handful of sociologists, historians and others who are studying the Human Genome Project Ð an international effort to map and sequence all the genes in the human body. Genome research is making major contributions to biomedical science and agriculture, and it is rapidly creating knowledge and technology worth billions of dollars in the pharmaceutical industry. One set of problems centers around how scientists share data. When researchers race to find the same gene, they often keep their preliminary results secret, fearing that sharing data might allow competing scientists to seize the lead. The result: delay and duplication of effort that could slow research and the discovery of new drugs. Careers and valuable patents might be at stake, so scientists often have an incentive to limit access to data. To analyze the social dimensions of genome research, Hilgartner is conducting a long-term study of the field, interviewing researchers and observing them in laboratories and meetings. Before putting genome scientists under the microscope, Hilgartner rolled up his sleeves and went to work in a molecular biology laboratory to learn the techniques and procedures of genetic research. His research has been funded by the National Institutes of Health and the National Science Foundation, and he is now working on a book on the sociology of genome research. Hilgartner leads a graduate seminar on the politics of genetic engineering and teaches a course on research ethics. "Like other scientists," Hilgartner says, "genome researchers live in a complex social world. My work is aimed at understanding that world and shedding some light on the social and ethical side of the explosive growth of genetics and biotechnology."