Skip to main content
SpringerLink
Log in

Strategies for consulting with the community: The cases of four large-scale genetic databases

  • Published:
Science and Engineering Ethics Aims and scope Submit manuscript

Abstract

Large-scale genetic databases are being developed in several countries around the world. However, these databases depend on public participation and acquiescence. In the past, information campaigns have been waged and little attention has been paid to dialogue. Nowadays, it is important to include the public in the development of scientific research and to encourage a free, open and useful dialogue among those involved.

This paper is a review of community consultation strategies as part of four proposed large-scale genetic databases in Iceland, Estonia, United Kingdom and Quebec. The Iceland Health Sector Database and Estonian Genome Project have followed a “communication approach” in order to address public concerns, whereas, UK Biobank and Quebec CARTaGENE have chosen a “partnership approach” to involve the public in decision-making processes.

Following a comparison of community consultation strategies, the main concerns of the public are examined as well as the challenges of involving communities. Importantly, reported across all groups is the concern for confidentiality, respect of the individual, transparency, and the donor’s right to access to their own result. However, even if researchers demonstrate a willingness to respect values such as fair representation, transparency and accountability, there is still a risk that the public will mistrust researchers and simply will not participate in sufficient numbers. Complications may arise when individual and community interests conflicts. The implementation of a partnership approach is definitely involving and costly; however, if used properly, this method can improve both participation and so database development.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Guttmacher A, Collins F.S. (2002) Genomic Medicine — A Primer. New England Journal of Medicine 347: 1512–20.

    Article  Google Scholar 

  2. National Institutes of Health (NIH) (2002) Points to Consider When Planning a Genetic Study That Involves Members of Named Populations. (www.nih.gov/sigs/bioethics/named_populations.html).

  3. Ivinson, A.J., Bach, F.H. (2002) The xenotransplantation question: Public consultation is an important part of the answer. Journal of American Medical College 167(1): 42–3.

    Google Scholar 

  4. Public Affairs and Communications Branch of Environment Canada (1994) Public Consultation Guideline H-5.

  5. World Health Organization (WHO) (2002) Genomics and World Health, Report of the Advisory Committee on Health Research, Geneva (www3.who.int/whosis/genomics/pdf/genomics_report.pdf).

  6. Mitchell, P. (2002) UK launches ambitious tissue/data bank project. Nature Biotechnology 20: 529.

    Article  Google Scholar 

  7. Anon. (2002) Human genetic databases and the protection of medical information. Brief UK Policy Update (www.medinfo.cam.ac.uk/phgu/info_database/ELSI/genet-database.asp).

  8. Kaye, J., Martin, P. (2000) Safeguards for research using large scale DNA collections. British Medical Journal 321: 1146–9.

    Article  Google Scholar 

  9. Estonian Genome Foundation web site; (www.genomics.ee).

  10. Annas, G. (2000) Rules for research on human genetic variation—lessons from Iceland. New England Journal of Medicine 342(24): 1830–33.

    Article  Google Scholar 

  11. Godfrey, K. (2003) Genetic databank launches ethics framework. British Medical Journal 327: 700.

    Article  Google Scholar 

  12. Deschenes, Cardinal, G. (2003) Projet CARTaGENE: Encadrement normatif. Centre de recherche en droit public, Universite de Montreal (www.cartagene.qc.ca).

  13. Estonian Genome Project web site; (www.geenivaramu.ee).

  14. Medical Research Council (MRC) (2001) Human tissue and biological samples for use in research: Operational and ethical guidelines (www.mrc.ac.uk/pdf-tissue_guide_fin.pdf).

  15. Quebec Network of Applied Genetic Medicine (RMGA) (2000) Statement of Principles on Human Genome Research (www.rmga.qc.ca).

  16. Quebec Network of Applied Genetic Medicine (RMGA) (2003) Statement of Principles on the Ethical Conduct of Human Genetic Research Involving Populations (www.rmga.qc.ca).

  17. Commission de l’éthique de la science et de la technologie (2003) Avis les enjeux éthiques des banques d’information génétique: Pour un encadrement démocratique et responsible. Gouvernement du Quebec.

  18. Gulcher, J., Stefansson, K. (2000) The Icelandic healthcare database and informed consent. New England Journal of Medicine 342: 1827–30.

    Article  Google Scholar 

  19. Mannvernd web site; (www.mannvernd.is).

  20. Overby, S. (2001) Iceland’s dilemma: Privacy vs. progress. CIO Magazine (www.cio.com).

  21. deCODE Genetics web site; (www.decode.com).

  22. Sunsite: University of California at Berkeley; (http://sunsite.berkeley.edu/biotech/iceland/debate.html).

  23. Human Genetics Commission (HGC) (2001) Public attitudes to human genetic information. (www.hgc.gov.uk).

  24. Office of Science and Technology (OST), The Wellcome Trust (WT) (2000) Science and the public: A review of science communication and public attitudes to science in Britain. (www.wellcome.ac.uk/publications).

  25. Cragg Ross Dawson (2000) Public perceptions of human biological samples. Report prepared for The Medical Research Council & The Wellcome Trust (www.wellcome.ac.uk/en/1/biovenpopethpub.html).

  26. Rawle, F.C., (2003) UK DNA sample collections for research. In: Populations and genetics: Legal and socio-ethical perspectives. ed. Knoppers, B.M., Kluwer Law International, The Hague/New York/London.

    Google Scholar 

  27. People Science & Policy Ltd. (2002) UK Biobank: A question of trust. Report prepared for The Medical Research Council & The Wellcome Trust (www.wellcome.ac.uk/en/1/biovenpopethtwo.html).

  28. UK Biobank web site; (www.biobank.ac.uk/consultation.htm).

  29. McGrath, D. (2002) Ethical concerns at the DNA bank. Wired News (www.wired.com).

  30. Gene Watch UK web site; (www.genewatch.org).

  31. Human Genetics Alert web site; (www.hgalert.org).

  32. Institute of Science in Society web site; (www.i-sis.org.uk).

  33. CARTaGENE web site; (www.cartagene.qc.ca).

  34. Condit, C. (2001) What is “public opinion” about genetics? Nature Reviews: Genetics 2: 811–15.

    Article  Google Scholar 

  35. Breithaupt, H. (2001) The future of medicine. EMBO reports 2(6): 465–7.

    Google Scholar 

  36. Burton, B. (2002) Proposed genetic database on Tongans opposed. BMJ 324: 443.

    Article  Google Scholar 

  37. Philipkoski, K. (2001) Framingham Gene Project Killed. Wired News (www.wirednews,com/news/Med-Tech/).

  38. Juengst, E. (2000) What “community review” can and cannot do. The Journal of Law, Medicine & Ethics 28(1): 52–4.

    Article  Google Scholar 

  39. Resnik, D.B. (2001) Setting biomedical research priorities: Justice, science and public participation. Kennedy Institute of Ethics Journal 11(2): 181–204.

    Article  Google Scholar 

  40. Furr, L.A. (2002) Perceptions of Genetics Research As Harmful to Society: Differences among Samples of African-Americans and European-Americans. Genetic Testing. 6: 25–30.

    Article  Google Scholar 

  41. Dalton, R. (2002) Tribe blasts ‘exploitation’ of blood samples. Nature. 420: 111.

    Article  Google Scholar 

  42. Burhansstipanov, L., Bemis, L.T., Dignan, M.B. (2001) Native American Cancer Education: Genetic and Cultural Issues. J. Cancer Ed. 16: 143.

    Google Scholar 

  43. Burgess, M. (YEAR??) Democracy, Ethics and Genomics: Consultation, Deliberation & Modellings (http://gels.ethics.ubc.ca).

  44. Foster, M.W., Sharp, R.R., Freeman, W.L., Chino, M., Bernsten, D., Carter, T.H. (1999) The role of community review in evaluating the risks of human genetic variation in research. American Journal of Human Genetics 64: 1719–27.

    Article  Google Scholar 

  45. Weijer, C., Emanuel, E.J. (2000) Protecting communities in biomedical research. Science 289: 1142–4.

    Article  Google Scholar 

  46. Jennings, B. (1990) Bioethics and Democracy. Centennial Review 34: 207–25.

    Google Scholar 

  47. Reiser S (1991) The Public and the Expert in Biomedical Policy Controversies. In: Hanna. Kathi E. (ed.), Biomedical Politics, National Academy Press, Washington, 325–31.

    Google Scholar 

  48. Harris Interactive (2001) The public is overwhelmingly optimistic and supportive of genomics research — however, knowledge and understanding remain modest. Health Care News. 1: 20.

    Google Scholar 

  49. Weijer, C., Goldsand, G., Emanuel, E.J. (1999) Protecting communities in research: Current guidelines and limits of extrapolation. Nature Genetics 23(3): 275–80.

    Article  Google Scholar 

  50. Caulfield, T., Outerbridge, T. (2002) DNA databanks, public opinion and the law. Med Clin Exp. 25: 255.

    Google Scholar 

  51. Furr, L.A. (1999) Social status and attitudes toward organizational control of genetic data. Sociolog. Focus 32: 371–382.

    Google Scholar 

  52. Holtzman, N.A. (1989) Proceed with Caution: Predicting Genetic Risks in the Recombinant DNA Era, Johns Hopkins University Press, Baltimore.

    Google Scholar 

  53. Shickle, D. (2001) A Matter of Opinion: New Methods of Public Consultation”. Wellcome Trust Magazine 29, Q4.

  54. Habermas, J. (1992) De L’éthique de la discussion, Hunyadi, Flammarion.

    Google Scholar 

  55. Habermas, J. (1997) Droit et démocratie, Gallimard, Mayenne.

    Google Scholar 

  56. Health Canada (2000) Public Involvement: Framework & Guidelines, Minister of Public Works and Government Services Canada, Ottawa.

    Google Scholar 

  57. Thibault, A., Lequin, M., et Tremblay, M. (2000) Cadre de référence de la participation publique (Démocratique, utile et crédible), Conseil de la santé et du bien-être Gouvernement du Québec, Sainte-Foy (Québec).

    Google Scholar 

  58. Goggin, M. (1986) Governing Science and Technology Democratically: A Conceptual Framework, in: Goggin, Malcolm L. (éd.) (1986): Governing Science and Technology in a Democracy, The University of Tennessee Press, Knoxville, pp. 3–31.

    Google Scholar 

  59. May, R. (2001) Science and Society. Science, 292: 1021.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Faculty of Medicine, Bioethics Programs, University of Montreal, Canada

    B. Godard

  2. Faculty of Law, Research Centre for Public Law, University of Montreal, Canada

    B. Godard, J. Marshall & B. M. Knoppers

  3. Faculty of Medicine, Biomedical Ethics Unit, McGill University, Canada

    J. Marshall

  4. Faculty of Medicine, Laval University, Canada

    C. Laberge

Authors
  1. B. Godard
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. J. Marshall
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. C. Laberge
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. B. M. Knoppers
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to B. Godard.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Godard, B., Marshall, J., Laberge, C. et al. Strategies for consulting with the community: The cases of four large-scale genetic databases. SCI ENG ETHICS 10, 457–477 (2004). https://doi.org/10.1007/s11948-004-0003-y

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11948-004-0003-y

Keywords

Search

Navigation