Complicated legacies: The human genome at 20

Author:

Jones Kathryn Maxson12,Cook-Deegan Robert3,Rotimi Charles N.4,Callier Shawneequa L.45,Bentley Amy R.4,Stevens Hallam6,Phillips Kathryn A.789,Jansen Jeroen P.79,Weyant Christopher F.7,Roberts Dorothy E.10,Zielinski Dina1112,Erlich Yaniv13,Garrison Nanibaa’ A.141516,Carroll Stephanie Russo1718,Ossorio Pilar N.19,Moreau Yves20,Wang Maya21

Affiliation:

1. School of Life Sciences, Arizona State University, Tempe, AZ, USA

2. Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA

3. School for the Future of Innovation in Society and Consortium for Science, Policy and Outcomes, Arizona State University, Washington, DC, USA

4. Center for Research on Genomics and Global Health, National Human Genome Research Institute, Bethesda, MD, USA

5. Department of Clinical Research and Leadership, George Washington University School of Medicine and Health Sciences, Washington, DC, USA

6. School of Humanities, Nanyang Technological University, Singapore

7. Center for Translational and Policy Research on Personalized Medicine (TRANSPERS), Department of Clinical Pharmacy, University of California, San Francisco, CA, USA

8. Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, CA, USA

9. Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, CA, USA

10. Department of Africana Studies, Department of Sociology, and Law School, University of Pennsylvania, Philadelphia, PA, USA

11. Université de Paris, INSERM 970, Paris Translational Research Centre for Organ Transplantation, Paris, France

12. Doctoral School 515, Sorbonne Université, Paris, France

13. Efi Arazi School of Computer Science, IDC Herzliya, Herzliya, Israel

14. Institute for Society & Genetics, University of California, Los Angeles, CA 90095, USA

15. Institute for Precision Health, David Geffen School of Medicine, University of California, Los Angeles, CA 90095, USA

16. Division of General Internal Medicine & Health Services Research, David Geffen School of Medicine, University of California, Los Angeles, CA 90095, USA

17. Native Nations Institute, Udall Center for Studies in Public Policy, University of Arizona, Tucson, AZ 85724, USA

18. Mel and Enid Zuckerman College of Public Health, University of Arizona, Tucson, AZ 85724, USA

19. Morgridge Institute for Research and University of Wisconsin Law School, Madison, WI, USA

20. University of Leuven (KU Leuven), Leuven, Belgium

21. Human Rights Watch, New York, NY, USA

Abstract

Millions of people today have access to their personal genomic information. Direct-to-consumer services and integration with other “big data” increasingly commoditize what was rightly celebrated as a singular achievement in February 2001 when the first draft human genomes were published. But such remarkable technical and scientific progress has not been without its share of missteps and growing pains. Science invited the experts below to help explore how we got here and where we should (or ought not) be going.

Publisher

American Association for the Advancement of Science (AAAS)

Subject

Multidisciplinary

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