Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Science and Society
  • Published:

Share and share alike: deciding how to distribute the scientific and social benefits of genomic data

Abstract

Emerging technologies make genomic analyses more efficient and less expensive, enabling genome-wide association and gene–environment interaction studies. In anticipation of their results, funding agencies such as the US National Institutes of Health and the Wellcome Trust are formulating guidelines for sharing the large amounts of genomic data that are generated by the projects that they sponsor. Data-sharing policies can have varying implications for how disease susceptibility and drug-response research will be pursued by the scientific community, and for who will benefit from the resulting medical discoveries. We suggest that the complex interplay of stakeholders and their interests, rather than single-issue and single-stakeholder perspectives, should be considered when deciding genomic data-sharing policies.

This is a preview of subscription content, access via your institution

Relevant articles

Open Access articles citing this article.

Access options

Buy this article

Prices may be subject to local taxes which are calculated during checkout

Figure 1: The intersections of stakeholder interests with those of other stakeholders in particular aspects of genomic data sharing.

References

  1. Bennett, S. T., Barnes, C., Cox, A., Davies, L. & Brown, C. Toward the $1000 human genome. Pharmacogenomics 6, 373–382 (2005).

    Article  CAS  Google Scholar 

  2. National Human Genome Research Institute. Reaffirmation and extension of NHGRI rapid data release policies: large-scale sequencing and other community resource projects. Genome.gov [online], (2003).

  3. Wellcome Trust. Sharing data from large-scale biological research projects: a system of tripartite responsibility. Wellcome Trust [online], (2003).

  4. National Institutes of Health. Request for information (RFI): Proposed policy for sharing of data obtained in NIH supported or conducted genome-wide association studies (GWAS). National Institutes of Health [online], (2006).

  5. Malin, B. A. An evaluation of the current state of genomic data privacy protection technology and a roadmap for the future. J. Am. Med. Inform. Assoc. 12, 28–34 (2005).

    Article  Google Scholar 

  6. McGuire, A. L. & Gibbs, R. A. Genetics. No longer de-identified. Science 312, 370–371 (2006).

    Article  CAS  Google Scholar 

  7. Lin, Z., Owen, A. B. & Altman, R. B. Genomic research and human subject privacy. Science 305, 183 (2004).

    Article  CAS  Google Scholar 

  8. Weir, R. F. & Olick, R. S. The Stored Tissue Issue: Bioemedical Research, Ethics, and Law in the Era of Genomic Medicine (Oxford Univ. Press, New York, 1994).

    Google Scholar 

  9. Kohane, I. S., Masys, D. R. & Altman, R. B. The incidentalome: a threat to genomic medicine. JAMA 296, 212–215 (2006).

    Article  CAS  Google Scholar 

  10. Bookman, E. B. et al. Reporting genetic results in research studies: summary and recommendations of an NHLBI working group. Am. J. Med. Genet. 140, 1033–1040 (2006).

    Article  Google Scholar 

  11. Ravitsky, V. & Wilfond, B. S. Disclosing individual genetic results to research participants. Am. J. Bioeth. 6, 8–17 (2006).

    Article  Google Scholar 

  12. McGuire, A. L. & Gibbs, R. A. Meeting the growing demands of genetic research. J. Law Med. Ethics 34, 809–812 (2006).

    Article  Google Scholar 

  13. Kohane, I. S. & Altman, R. B. Health-information altruists – a potentially critical resource. N. Engl. J. Med. 353, 2074–2077 (2005).

    Article  CAS  Google Scholar 

  14. Blumenthal, D. et al. Data withholding in genetics and the other life sciences: prevalences and predictors. Acad. Med. 81, 137–145 (2006).

    Article  Google Scholar 

  15. Genetic Alliance. Comments to the National Institutes of Health (NIH) in response to their request for information on data-sharing policy in relation to genome-wide association studies (GWAS). Genetic Allience [online], (2006).

  16. Terry, S. F., Terry, P. F., Rauen, K. A., Uitto, J. & Bercovitch, L. G. Advocacy groups as research organizations: the PXE International example. Nature Rev. Genet. 8, 157–164 (2007).

    Article  CAS  Google Scholar 

  17. Botkin, J. R. Protecting the privacy of family members in survey and pedigree research. JAMA 285, 207–211 (2001).

    Article  CAS  Google Scholar 

  18. Foster, M. W. & Sharp, R. R. Genetic research and culturally specific risks: one size does not fit all. Trends Genet. 16, 93–95 (2000).

    Article  CAS  Google Scholar 

  19. International Genetic Epidemiology Society. Position statement of the International Genetic Epidemiology Society in response to “Request for information: proposed policy on sharing of data in NIH-supported or conducted genome-wide association studies (GWAS).” International Genetic Epidemiology Society [online], (2006).

  20. Whitfield, K. E., Wiggins, S. A. & Brandon, D. T. Genetics and health disparities: fears and realities. J. Nat. Med. Assoc. 95, 539–543 (2003).

    Google Scholar 

  21. Clayton, E. W. Ethical, legal, and social implications of genomic medicine. N. Engl. J. Med. 349, 562–569 (2003).

    Article  Google Scholar 

  22. Rabino, I. Research scientists surveyed on ethical issues in genetic medicine: a comparison of attitudes of US and European researchers. New Genet. Soc. 25, 325–342 (2006).

    Article  Google Scholar 

  23. Niker, J. & Daar, A. S. Moral presentation of genetics-based narratives for public understanding of genetic science and its implications. Public Underst. Sci. 15, 113–123 (2006).

    Article  Google Scholar 

  24. Haddow, G., Laurie, G., Cunningham-Burley, S. & Hunter, K. G. Tackling community concerns about commercialisation and genetic research: a modest interdisciplinary proposal. Soc. Sci. Med. 64, 272–282 (2007).

    Article  Google Scholar 

  25. United States Department of Health and Human Services. Does the HIPAA Privacy Rule protect genetic information? United States Department of Health and Human Services [online], (2007).

  26. Cho, M. K. & Sankar, P. Forensic genetics and ethical, legal and social implications beyond the clinic. Nature Genet. 36, S8–S12 (2004).

    Article  CAS  Google Scholar 

  27. Boughman, J. A. Genomewide association studies data sharing: National Institutes of Health policy process. Am. J. Hum. Genet. 80, 581–582 (2007).

    Article  CAS  Google Scholar 

  28. Merz, J. F., Magnus, D., Cho, M. K. & Caplan, A. L. Protecting subjects' interests in genetics research. Am. J. Hum. Genet. 70, 965–971 (2002).

    Article  Google Scholar 

  29. Foster, M. W. & Sharp, R. R. Beyond race: toward a whole genome perspective on human populations and genetic variation. Nature. Rev. Genet. 5, 790–796 (2004).

    Article  CAS  Google Scholar 

  30. Tutton, R. Constructing participation in genetic databases: citizenship, governance, and ambivalence. Sci. Technol. Human Values 32, 172–195 (2007).

    Article  Google Scholar 

  31. Williams, G. & Schroeder, D. Human genetic banking: altruism, benefit and consent. New Genet. Soc. 23, 89–103 (2004).

    Article  Google Scholar 

  32. Sharp, R. R., Yudell, M. A. & Wilson, S. H. Shaping science policy in the age of genomics. Nature Rev. Genet. 5, 311–315 (2004).

    Article  CAS  Google Scholar 

  33. Resnik, D. B. The morality of human gene patents. Kennedy Inst. Ethics J. 7, 43–61 (1997).

    Article  Google Scholar 

  34. Cahill, L. S. Genetics, commodification, and social justice in the globalization era. Kennedy Inst. Ethics J. 11, 221–238 (2001).

    Article  CAS  Google Scholar 

  35. Heller, M. A. & Eisenberg, R. S. Can patents deter innovation? The anticommons in biomedical research. Science 280, 698–701 (1998).

    Article  CAS  Google Scholar 

  36. Nelson, R. R. The market economy, and the scientific commons. Res. Policy 33, 455–471 (2004).

    Article  Google Scholar 

  37. Caulfield, T., Cook-Deegan, R. M., Kieff, F. S. & Walsh, J. P. Evidence and anecdotes: an analysis of human gene patenting controversies. Nature Biotech. 24, 1091–1094 (2006).

    Article  CAS  Google Scholar 

  38. Pressman, L. et al. The licensing of DNA patents by US academic institutions: an empirical survey. Nature Biotechnol. 24, 31–39 (2006).

    Article  CAS  Google Scholar 

Download references

Acknowledgements

This paper was supported in part by the US National Cancer Institute (NCI), the US National Center for Research Resources (NCRR), the US National Institute on Environmental Health Sciences (NIEHS) and the US National Human Genome Research Institute (NHGRI). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NCI, NCRR, NIEHS, NHGRI or the US National Institutes of Health.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Morris W. Foster.

Ethics declarations

Competing interests

The authors declare no competing financial interests.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Foster, M., Sharp, R. Share and share alike: deciding how to distribute the scientific and social benefits of genomic data. Nat Rev Genet 8, 633–639 (2007). https://doi.org/10.1038/nrg2124

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/nrg2124

This article is cited by

Search

Quick links

Nature Briefing

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

Get the most important science stories of the day, free in your inbox. Sign up for Nature Briefing