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Self-Critical Federal Science? The Ethics Experiment within the U.S. Human Genome Project

Published online by Cambridge University Press:  13 January 2009

Eric T. Juengst
Eric T. Juengst
Affiliation:
Biomedical Ethics, Case Western Reserve University
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Extract

On October 1, 1988, thirty-five years after co-discovering the structure of the DNA molecule, Dr. James Watson launched an unprecedented experiment in American science policy. In response to a reporter's question at a press conference, he unilaterally set aside 3 to 5 percent of the budget of the newly launched Human Genome Project to support studies of the ethical, legal, and social implications of new advances in human genetics. The Human Genome Project (HGP), by providing geneticists with the molecular maps of the human chromosomes that they use to identify specific human genes, will speed the proliferation of a class of DNA-based diagnostic and risk-assessment tests that already create professional ethical and health-policy challenges for clinicians. “The problems are with us now, independent of the genome program, but they will be associated with it,” Watson said. “We should devote real money to discussing these issues.” By 1994, the “ELSI program” (short for “Ethical, Legal, and Social Implications”) had spent almost $20 million in pursuit of its mission, and gained both praise and criticism for its accomplishments.

Type
Research Article
Information
Social Philosophy and Policy , Volume 13 , Issue 2 , Summer 1996 , pp. 63 - 95
Copyright
Copyright © Social Philosophy and Policy Foundation 1996

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