Through the Lens of the Sequence
- Center for Genetics and Health Policy, Department of Pediatrics and School of Law, Vanderbilt University, Nashville, Tennessee 37232, USA
This extract was created in the absence of an abstract.
The completion of the rough draft of the human genome is a scientific feat worthy of celebration. But the media attention that has been devoted to the Human Genome Project demonstrates that most people are not as interested in what the sequenceis as in what it means for individuals and for society, for good or for ill. My purpose in writing this essay is to discuss how the project was conducted here in the United States, and some of the implications of knowing the sequence (or more aptly, a sequence).
The Transformative Impact of the Ethical, Legal, and Social Implications (ELSI) Set-Aside
When James Watson declared that the Human Genome Project in the United States would set aside a portion of the funds provided by Congress to examine and attempt to address the ethical, legal, and social implications of this research, he transformed the face of biomedical research in this country. Previously, the scientific enterprise had proceeded largely without reflection, except for the occasional proclamation that research was inherently beneficial or at least value-neutral. People, usually those outside the scientific community, had argued for some time and with increasing intensity that science was in fact situated in a social context, that the questions asked by scientists were shaped by social influences, and that the results of research had social consequences. Many of these commentators were particularly concerned about genetics, influenced both by the enduring dilemmas posed by this discipline and by the unfortunate history of eugenics here and abroad.
Watson was not writing on a clean slate when he made his very public commitment, but he did bring social inquiry within the inner sanctum of science by reaching into the latter's purse. The effect of making a commitment to explore the implications of genome research has been dramatic. This initiative made it much harder for genome scientists to ignore the impact …
