Complicated legacies: The human genome at 20

Kathryn Maxson Jones; Robert Cook-Deegan; Charles N. Rotimi; Shawneequa L. Callier; Amy R. Bentley; Hallam Stevens; Kathryn A. Phillips; Jeroen P. Jansen; Christopher F. Weyant; Dorothy E. Roberts; Dina Zielinski; Yaniv Erlich; Nanibaa’ A. Garrison; Stephanie Russo Carroll; Pilar N. Ossorio; Yves Moreau; Maya Wang

doi:10.1126/science.abg5266

Policy ForumHuman Genome Anniversary

Complicated legacies: The human genome at 20

Kathryn Maxson Jones1,2 ⇑,
Robert Cook-Deegan3,
Charles N. Rotimi4 ⇑,
Shawneequa L. Callier4,5,
Amy R. Bentley4,
Hallam Stevens6 ⇑,
Kathryn A. Phillips7,8,9 ⇑,
Jeroen P. Jansen7,9,
Christopher F. Weyant7,
Dorothy E. Roberts10 ⇑,
Dina Zielinski11,12,
Yaniv Erlich13 ⇑,
Nanibaa’ A. Garrison14,15,16 ⇑,
Stephanie Russo Carroll17,18,
Pilar N. Ossorio19 ⇑,
Yves Moreau20 ⇑,
Maya Wang21 ⇑

¹School of Life Sciences, Arizona State University, Tempe, AZ, USA
²Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA
³School for the Future of Innovation in Society and Consortium for Science, Policy and Outcomes, Arizona State University, Washington, DC, USA
⁴Center for Research on Genomics and Global Health, National Human Genome Research Institute, Bethesda, MD, USA
⁵Department of Clinical Research and Leadership, George Washington University School of Medicine and Health Sciences, Washington, DC, USA
⁶School of Humanities, Nanyang Technological University, Singapore
⁷Center for Translational and Policy Research on Personalized Medicine (TRANSPERS), Department of Clinical Pharmacy, University of California, San Francisco, CA, USA
⁸Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, CA, USA
⁹Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, CA, USA
¹⁰Department of Africana Studies, Department of Sociology, and Law School, University of Pennsylvania, Philadelphia, PA, USA
¹¹Université de Paris, INSERM 970, Paris Translational Research Centre for Organ Transplantation, Paris, France
¹²Doctoral School 515, Sorbonne Université, Paris, France
¹³Efi Arazi School of Computer Science, IDC Herzliya, Herzliya, Israel
¹⁴Institute for Society & Genetics, University of California, Los Angeles, CA 90095, USA
¹⁵Institute for Precision Health, David Geffen School of Medicine, University of California, Los Angeles, CA 90095, USA
¹⁶Division of General Internal Medicine & Health Services Research, David Geffen School of Medicine, University of California, Los Angeles, CA 90095, USA
¹⁷Native Nations Institute, Udall Center for Studies in Public Policy, University of Arizona, Tucson, AZ 85724, USA
¹⁸Mel and Enid Zuckerman College of Public Health, University of Arizona, Tucson, AZ 85724, USA
¹⁹Morgridge Institute for Research and University of Wisconsin Law School, Madison, WI, USA
²⁰University of Leuven (KU Leuven), Leuven, Belgium
²¹Human Rights Watch, New York, NY, USA

kmaxson{at}alumni.princeton.edu
rotimic{at}mail.nih.gov
hstevens{at}ntu.edu.sg
kathryn.phillips{at}ucsf.edu
dorothyroberts{at}law.upenn.edu
erlichya{at}gmail.com
nanibaa{at}socgen.ucla.edu
pnossorio{at}wisc.edu
yves.moreau{at}kuleuven.be
wangm{at}hrw.org

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Science 05 Feb 2021:
Vol. 371, Issue 6529, pp. 564-569
DOI: 10.1126/science.abg5266

Kathryn Maxson Jones

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

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

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For correspondence: kmaxson@alumni.princeton.edu

Robert Cook-Deegan

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

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Charles N. Rotimi

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

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For correspondence: rotimic@mail.nih.gov

Shawneequa L. Callier

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

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

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Amy R. Bentley

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

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Hallam Stevens

6School of Humanities, Nanyang Technological University, Singapore

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For correspondence: hstevens@ntu.edu.sg

Kathryn A. Phillips

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

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

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

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For correspondence: kathryn.phillips@ucsf.edu

Jeroen P. Jansen

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

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

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Christopher F. Weyant

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

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Dorothy E. Roberts

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

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For correspondence: dorothyroberts@law.upenn.edu

Dina Zielinski

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

12Doctoral School 515, Sorbonne Université, Paris, France

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Yaniv Erlich

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

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For correspondence: erlichya@gmail.com

Nanibaa’ A. Garrison

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

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

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

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For correspondence: nanibaa@socgen.ucla.edu

Stephanie Russo Carroll

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

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

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Pilar N. Ossorio

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

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For correspondence: pnossorio@wisc.edu

Yves Moreau

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

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For correspondence: yves.moreau@kuleuven.be

Maya Wang

21Human Rights Watch, New York, NY, USA

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For correspondence: wangm@hrw.org

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Summary

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.

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Complicated legacies: The human genome at 20

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