ELSI 2.0 for Genomics and Society

Science 11 May 2012:
Vol. 336 no. 6082 pp. 673-674
DOI: 10.1126/science.1218015

• Policy Forum

Research Priorities

ELSI 2.0 for Genomics and Society

1. Jane Kaye1,*,
2. Eric M. Meslin2,
3. Bartha M. Knoppers3,
4. Eric T. Juengst4,
5. Mylène Deschênes5,
6. Anne Cambon-Thomsen6,
7. Donald Chalmers7,
8. Jantina De Vries8,
9. Kelly Edwards9,
10. Nils Hoppe10,
11. Alastair Kent11,
12. Clement Adebamowo12,
13. Patricia Marshall13,
14. Kazuto Kato14

+ Author Affiliations

1. ¹HeLEX, Department of Public Health, University of Oxford OX3 7LF, Oxford UK
2. ²IU Center for Bioethics, Indiana University, Bloomington, IN 46202, USA.
3. ³Centre for Genomics and Policy, McGill University, Montreal H3A 1A4, Canada.
4. ⁴UNC Center for Bioethics, University of North Carolina, Chapel Hill, NC 27599, USA.
5. ⁵P³G, Montreal H3V 1A2, Canada.
6. ⁶UMR 1027, INSERM, Epidemiology and analyses in public health, 31000 Toulouse, France; UMR 1027, Faculté de médecine Purpan, Université Paul Sabatier Toulouse, 31000 Toulouse, France.
7. ⁷Faculty of Law, University of Tasmania, Hobart, Tasmania 7000, Australia.
8. ⁸Faculty of Health Sciences, University of Cape Town, South Africa.
9. ⁹Department of Bioethics and Humanities, University of Washington, Seattle, WA 98195, USA.
10. ¹⁰CELLS, Leibniz Universitaet, 30167 Hannover, Germany.
11. ¹¹Genetic Alliance UK, London N1 3QP, UK.
12. ¹²Institute of Human Virology, Garki, Abuja, Nigeria; University of Maryland School of Medicine, Baltimore, MD 21201, USA.
13. ¹³Department of Bioethics, Case Western Reserve University, Cleveland, OH 44106, USA.
14. ¹⁴Osaka University, Suita 565-0871, Japan.

1. ↵*Author for correspondence. E-mail: jane.kaye@law.ox.ac.uk

Anticipating and addressing the ethical, legal, and social implications (ELSI) of scientific developments has been a key feature of the genomic research agenda (1–4). Research in genomics is advancing by developing common infrastructures and research platforms, open-access and sharing policies, and new forms of international collaborations (5–12). In this paper, we outline a proposal to establish a “collaboratory” (13) for ELSI research to enable it to become more coordinated, responsive to societal needs, and better able to apply the research knowledge it generates at the global level. Current ELSI research is generally nationally focused, with investigator-initiated approaches that are not always aligned with the developments in international genomics research. This makes it difficult to efficiently leverage findings that impact global practice and policy. Moreover, as translational genomic research design challenges become more pressing (14), ELSI research will need to develop greater capacity to respond rapidly to new developments. The ELSI 2.0 Initiative is designed to catalyze international collaboration in ELSI genomics and to enable those in the field to better assess the impact and dynamics of global genome research.