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:


 Download Chapter



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?

Search for more...
Back to top

Use of cookies on this website

We are using cookies to provide statistics that help us give you the best experience of our site. You can find out more in our Privacy Policy. By continuing to use the site you are agreeing to our use of cookies.