September 01, 2016

The Evolving Ethics Challenge in Genomic Science

Ethical, legal, and social implications (ELSI) research was an integral part of the Human Genome Project (HGP) from the outset.1 In 1993, Congress required the National Institutes of Health (NIH) to allocate “not less than 5%” of its HGP budget for ELSI research. By 2014, the NIH had provided almost $317 million of ELSI research support.2 These developments coincided with a flowering of the field of bioethics. The percentage of hospitals with an ethics committee rose from around 1 percent in the early 1980s to over 90 percent by the early twenty-first century,3 and academic bioethics programs, once a rarity, are now a common fixture on many college campuses.

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