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

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

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