Twenty
years ago, when the proposed project to sequence the entire human genome was
under consideration, both the promise and to some extent the peril were
subjects of active discussion. The promise was seen to lie in the potential for
deducing the way the human organism is formed and works. From that could come
understanding of what goes wrong, leading to birth defects as well as ailments
of later life. In turn, that understanding could lead to precise diagnoses,
including prenatal diagnosis, prediction of late-onset disorders, and design of
preventive measures, speciWc treatments, and even gene therapy. The promise
captured the imagination of both the scientiWc and the lay community, leading
to the public funding of the Human Genome Project here and abroad, with formal initiation
of the National Institutes of Health (NIH) project on October 1, 1990. The
peril was discussed at greater length after the establishment of the Ethical,
Legal and Social Implications (ELSI) Research Program as part of the NIH
project. The Human Genome Project’s Wrst director, James Watson, determined
that 3 percent of his budget (and more if necessary) should be devoted to the
ELSI Research Program. Thus, beginning in 1990, research grant applications
were submitted to the NIH not only by scientists for conduct of the technical
aspects of the project but also by sociologists, legal scholars, science
historians, philosophers, theologians, genetic counselors, and others for
support of ELSI studies and conferences.
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