Self-Critical Federal Science? The Ethics Experiment within the U.S. Human Genome Project: ERIC T. JUENGST
Social Philosophy and Policy 13 (2):63-95 (1996)
AbstractOn 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, 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” had spent almost $20 million in pursuit of its mission, and gained both praise and criticism for its accomplishments.
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Citations of this work
Strangers at the Benchside: Research Ethics Consultation.Mildred K. Cho, Sara L. Tobin, Henry T. Greely, Jennifer McCormick, Angie Boyce & David Magnus - 2008 - American Journal of Bioethics 8 (3):4 – 13.
Genomic Essentialism: Its Provenance and Trajectory as an Anticipatory Ethical Concern.Maya Sabatello & Eric Juengst - 2019 - Hastings Center Report 49 (S1):S10-S18.
Philosophy in the Age of Neoliberalism.Robert Frodeman, Adam Briggle & J. Britt Holbrook - 2012 - Social Epistemology 26 (3-4):311-330.
Essay Review: ELSI's Revenge. [REVIEW]Audra J. Wolfe - 2001 - Journal of the History of Biology 34 (1):183-193.
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