The Human Genome Project and the legacy of its ethics programs

Authored by: Stephen Hilgartner

Handbook of Genomics, Health and Society

Print publication date:  April  2018
Online publication date:  April  2018

Print ISBN: 9781138211957
eBook ISBN: 9781315451695
Adobe ISBN:

10.4324/9781315451695-16

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Abstract

In the second half of the 1980s, an elite group of scientists set out to make entire genomes into tractable objects of biological analysis. Envisioning themselves as a scientific vanguard that would spearhead a revolution in the biological sciences and medicine, they sought to catalyze a “paradigm shift” in biology. The centerpiece of their scientific proposals was the Human Genome Project (HGP) – a concerted effort to map and sequence the genomes of the human and several model organisms; advance genome technology; and develop new tools for computational analysis. Their vision of revolutionary change captured imaginations and resources, and before the end of the decade, the U.S. Congress had committed $3 billion to the HGP, a joint project of the National Institutes of Health (NIH) and Department of Energy (DOE) (Cook-Deegan, 1994). Smaller genome programs of varying configurations took shape in Europe and Japan (Jordan, 1992). The prospect of transformational change – in biological research, medicine, and many aspects of everyday life – raised problems of governance (Hilgartner, 2017). How could decision makers govern the “genomics revolution” in ways that realized its promised benefits while minimizing its potential for harm?

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