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:

Solidarity and equity: new ethical frameworks for genetic databases

Abstract

Genetic database initiatives have given rise to considerable debate about their potential harms and benefits. The question arises as to whether existing ethical frameworks are sufficient to mediate between the competing interests at stake. One approach is to strengthen mechanisms for obtaining informed consent and for protecting confidentiality. However, there is increasing interest in other ethical frameworks, involving solidarity — participation in research for the common good — and the sharing of the benefits of research.

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

Relevant articles

Open Access articles citing this article.

Access options

Rent or buy this article

Prices vary by article type

from$1.95

to$39.95

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

References

  1. Emery, A. E. H. in Registers for the Detection and Prevention of Genetic Disease (eds Emery, A. E. H. & Miller, J. R.) 53–63 (Stratton, New York, 1976).

    Google Scholar 

  2. Merritt, A. D., Kang, K. W., Conneally, P. M., Gersting, J. M. & Rigo, T. in Registers for the Detection and Prevention of Genetic Disease (eds Emery, A. E. H. & Miller, J. R.) 31–51 (Stratton, New York, 1976).

    Google Scholar 

  3. Vlietinck, R. F. & Van den Berghe, H. in Registers for the Detection and Prevention of Genetic Disease (eds Emery, A. E. H. & Miller, J. R.) 65–71 (Stratton, New York, 1976).

    Google Scholar 

  4. Hecht, F. in Registers for the Detection and Prevention of Genetic Disease (eds Emery, A. E. H. & Miller, J. R.) 73–86 (Stratton, New York, 1976).

    Google Scholar 

  5. Hook, E. B. in Registers for the Detection and Prevention of Genetic Disease (eds Emery, A. E. H. & Miller, J. R.) 9–29 (Stratton, New York, 1976).

    Google Scholar 

  6. Williams, R. R. et al. in Genetic Approaches to Coronary Heart Disease and Hypertension (eds Berg, K., Bulyzhenkov, V., Christen, Y. & Corvol, P.) 8–19 (Springer, Berlin, 1991).

    Book  Google Scholar 

  7. Scandinavian Simvastatin Survival Study Group. Randomised trial of cholesterol lowering in 4444 patients with coronary heart disease: the Scandinavian Simvastatin Survival Study (4S). Lancet 344, 1383–1389 (1994).

  8. Weijer, C. Protecting communities in research: philosophical and pragmatic challenges . Cambr. Quart. Hlthcare Ethics 8, 501– 513 (1999).

    CAS  Google Scholar 

  9. Norges Offentlige Utredninger in Pseudonyme helseregistre (Statens Forvaltningstjeneste, Seksjon Statens Trykning, Oslo, 1993).

  10. North Cumbria Community Genetics Project. Report 1996–2000 (Westlakes Research Institute, Cumbria, 2000).

  11. Farrar, S. UK considers national gene database. Times Higher Education Suppl. 11 February (2000).

  12. Fears, R. & Poste, G. Building population genetics resources using the U.K. NHS. Science 284, 267– 268 (1999).

    Article  CAS  Google Scholar 

  13. Chadwick, R. The Icelandic database – do modern times need modern sagas? BMJ 319, 441–444 ( 1999).

    Article  CAS  Google Scholar 

  14. Chadwick, R. in Informed Consent in Medical Research (eds Doyal, L. & Tobias J. S.) 203–210 (BMJ Books, London, 2001).

    Google Scholar 

  15. Medical Research Council. in Human Tissue and Biological Samples for Use in Research: Report of the Medical Research Council Working Group to Develop Operational and Ethical Guidelines (MRC, London, 1999).

  16. National Bioethics Advisory Commission. Research Involving Human Biological Materials: Ethical Issues and Policy Guidance (National Bioethics Advisory Commission, Rockville, Maryland, 1999).

  17. Chadwick, R. in Essential Practice in Patient-Centred Care (eds Fulford, K. W. M., Ersser, S. & Hope, T.) 40–49 (Blackwell Science, Oxford, 1996).

    Google Scholar 

  18. Annas, G. J. Rules for research on human genetic variation — lessons from Iceland . N. Engl. J. Med. 342, 1830– 1833 (2000).

    Article  CAS  Google Scholar 

  19. Knoppers, B. M. Presentation to the Bordeaux Colloquium on Science, Ethics and the Life Sciences (23 June 2000) (in the press).

    Google Scholar 

  20. Berg, K. in Proceedings of the 2nd Symposium of the Council of Europe on Bioethics 122–143 (Council of Europe Press, Strasbourg, 1994).

    Google Scholar 

  21. Human Genome Organisation (HUGO) Ethics Committee . Statement on Benefit-Sharing (Human Genome Organisation, London, 2000).

  22. O'Neill, O. Presentation (Greenwall Lecture) to the American Society for Bioethics and Humanities October 1999 (in the press).

    Google Scholar 

  23. Kaye, J. & Martin, P. Safeguards for research using large scale DNA collections. BMJ 321, 1146– 1149 (2000).

    Article  CAS  Google Scholar 

  24. Gulcher, J. R. & Stefansson, K. The Icelandic healthcare database and informed consent. N. Engl. J. Med. 342, 1827–1830 (2000).

    Article  CAS  Google Scholar 

  25. Gulcher, J. R., Kristjansson, K., Gudbjartsson, H. & Stefansson, K. Protection of privacy by third-party encryption in genetic research in Iceland . Eur J Hum Genet. 8, 739– 742 (2000).

    Article  CAS  Google Scholar 

  26. Human Genome Organisation (HUGO) Ethics Committee. Statement on the principled conduct of genetic research. Genome Digest 3, 2–3 ( 1996).

Download references

Author information

Authors and Affiliations

Authors

Related links

Related links

FURTHER INFORMATION

HUGO Statement on Benefit-Sharing

Icelandic Health Sector Database

UK Population Biomedical Collection

Association of Icelanders for Ethics in Science and Medicine

DeCode Genetics

Westlakes Research Institute

Estonian Genome Foundation

US National Bioethics Advisory Commission (NBAC) Report on Research Involving Human Biological Materials: Ethical Issues and Policy Guidance

Rights and permissions

Reprints and permissions

About this article

Cite this article

Chadwick, R., Berg, K. Solidarity and equity: new ethical frameworks for genetic databases. Nat Rev Genet 2, 318–321 (2001). https://doi.org/10.1038/35066094

Download citation

  • Issue Date:

  • DOI: https://doi.org/10.1038/35066094

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