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:

The social and ethical issues of post-genomic human biobanks

Nature Reviews Genetics volume 5, pages 866–873 (2004)Cite this article

Abstract

Biobanking — the organized collection of biological samples and associated data — ranges in scope from small collections of samples in academic or hospital settings to large-scale national repositories. Biobanks raise many ethical concerns, to which authorities are responding by introducing specific regulations. Genomics research, which thrives on the sharing of samples and information, is affected by two prominent ethical questions: do ethical principles prevent or promote the sharing of stored biological resources? How does the advent of large-scale biobanking alter the way in which ethical issues are addressed?

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

Relevant articles

Open Access articles citing this article.

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

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

References

  1. Hirtzlin, I. et al. An empirical survey on biobanking of human genetic material and data in six EU countries. Eur. J. Hum. Genet. 11, 475–488 (2003).

    Article  Google Scholar 

  2. Steinberg, K. et al. DNA banking for epidemiologic studies: a review of current practices. Epidemiology 13, 246–254 (2002).

    Article  Google Scholar 

  3. National Bioethics Advisory Commission USA. The use of human biological materials in research <http://bioethics.gov/briefings/index.htm#jan99> (1999).

  4. Cambon-Thomsen, A., Ducournau, P., Gourraud, P. A. & Pontille, D. Biobanks for genomics and genomics for biobanks. Comp. Funct. Genomics 4, 628–634 (2003).

    Article  CAS  Google Scholar 

  5. Hansson, M. G. & Levin, M. (eds) Biobanks as Resources for Health (Uppsala Univ., Uppsala, 2003).

    Google Scholar 

  6. OECD. Biological Resource Centres: Underpinning the Future of Life Sciences and Biotechnology OECD code 932001041E1 (OECD, Paris, 2001).

  7. Anderlik, M. Commercial biobanks and genetic research: ethical and legal issues. Am. J. Pharmacogenomics 3, 203–215 (2003).

    Article  Google Scholar 

  8. Cambon-Thomsen, A. & Rial-Sebbag, E. Aspects éthiques des banques d'échantillons biologiques. Rev. Epidemiol. Sante Publique 51, 101–110 (2003) (in French).

    CAS  PubMed  Google Scholar 

  9. Reymond, M. A., Steinert, R., Escourrou, J. & Fourtanier, G. Ethical, legal and economic issues raised by the use of human tissue in postgenomic research. Dig. Dis. 20, 257–265 (2002).

    Article  CAS  Google Scholar 

  10. Commission de l'éthique et de la technologie. Les Enjeux Éthiques des Banques d'Information Génétique: pour un Encadrement Démocratique et Responsable <http://www.ethique.gouv.qc.ca/fr/ftp/AvisBanquesGen.pdf> (Gouvernement du Québec, Montréal 2003).

  11. CCNE. Ethical Problems Raised by the Collected Biological Material and Associated Information Data: 'Biobanks', 'Biolibraries' <http://www.ccne-ethique.fr/english/pdf/avis077.pdf> (French National Advisory Bioethics Committee, Paris, 2003).

  12. The European Parliament and The Council of the European Union. Directive 2004/23/EC of the European Parliament and of the Council of 31 March 2004 on setting standards of quality and safety for the donation, procurement, testing, processing, storage and distribution of human tissues and cells. Off. J. Eur. Union 47, L102/48–L102/58 (2004).

  13. Godard, B., Schmidtke, J., Cassiman, J. J. & Ayme, S. Data storage and DNA banking for biomedical research: informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective. Eur. J. Hum. Genet. 11 Suppl. 2, 88–122 (2003).

    Article  Google Scholar 

  14. HUGO Ethics Committee. Statement on DNA sampling control and access. Genome Digest 6, 8–9 (1999).

  15. Matthiessen, L. Survey on opinions from National Ethics Committees or similar bodies, public debate and national legislation in relation to human biobanks (European Commission Research Directorate-General, Brussels, 2002).

  16. UNESCO, Bioethics Committee. International Declaration on Human Genetic Data. <http://unesdoc.unesco.org/images/0013/001312/131204e.pdf#page=27> (2003).

  17. Knoppers, B. M. & Fecteau, C. Human genomic databases: a global public good? Eur. J. Health Law 10, 27–41 (2003).

    Article  Google Scholar 

  18. Sallée, C. in OECD Workshop on Human Genetic Research Databases: Issues or Privacy and Security (ed. OECD) 47 (OECD, Tokyo, 2004).

    Google Scholar 

  19. Austin, M. A., Harding, S. & McElroy, C. Genebanks: a comparison of eight proposed international genetic databases. Community Genet. 6, 37–45 (2003).

    PubMed  Google Scholar 

  20. Caze de Montgolfier, S. Collecte, Stockage et Utilisation des Produits du Corps Humain dans le Cadre des Recherches en Génétique: État des Lieux Historique, Éthique et Juridique; Analyse des Pratiques au Sein des Biothèques. Thesis. Univ. René Descartes, Paris (2002).

    Google Scholar 

  21. Knoppers, B. M. (ed.) Populations and Genetics. Legal and Socio-ethical Perspectives (Martinus Nijhoff, Leiden, 2003).

    Google Scholar 

  22. Barbour, V. UK Biobank: a project in search of a protocol? Lancet 361, 1734–1738 (2003).

    Article  Google Scholar 

  23. Knoppers, B. M. (ed.) Human DNA: Law and Policy. International and Comparative Perspectives (Kluwer Law International, Boston, 1997).

    Google Scholar 

  24. 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 

  25. White, M. T. & Gamm, J. Informed consent for research on stored blood and tissue samples: a survey of institutional review board practices. Account Res. 9, 1–16 (2002).

    Article  CAS  Google Scholar 

  26. Deschenes, M., Cardinal, G., Knoppers, B. M. & Glass, K. C. Human genetic research, DNA banking and consent: a question of 'form'? Clin. Genet. 59, 221–239 (2001).

    Article  CAS  Google Scholar 

  27. Sade, R. M. Research on stored biological samples is still research. Arch. Intern. Med. 162, 1439–1440 (2002).

    Article  Google Scholar 

  28. Chadwick, R. & Berg, K. Solidarity and equity: new ethical frameworks for genetic databases. Nature Rev. Genet. 2, 318–321 (2001).

    Article  CAS  Google Scholar 

  29. Kaye, J. Genetic research on the UK population — do new principles need to be developed? Trends Mol. Med. 7, 528–530 (2001).

    Article  CAS  Google Scholar 

  30. Greely, H. T. Informed consent and other ethical issues in human population genetics. Annu. Rev. Genet. 35, 785–800 (2001).

    Article  CAS  Google Scholar 

  31. Hoeyer, K. 'Science is really needed — that's all I know': informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden. New Genet. Soc. 22, 229–244 (2003).

    Article  Google Scholar 

  32. Ducournau, P. in Normes et Valeurs dans le Champ de la Santé (eds Cresson, G., Penec, S. & Schweyer, F.) 281–289 (Collection 'Recherche, santé, social', Rennes, 2004).

    Google Scholar 

  33. Harkin, M. The devil, the details, and the HGDP. Politics Life Sciences 18, 301–303 (1999).

    Article  CAS  Google Scholar 

  34. Lock, M. Interrogating the Human Diversity Genome Project. Soc. Sci. Med. 39, 603–606 (1994).

    Article  CAS  Google Scholar 

  35. Weiss, K. M. et al. Proposed model ethical protocol for collecting DNA samples. Houst. Law Rev. 33, 1431–1474 (1997).

    CAS  PubMed  Google Scholar 

  36. Foster, M. W., Bernsten, D. & Carter, T. H. A model agreement for genetic research in socially identifiable populations. Am. J. Hum. Genet. 63, 696–702 (1998).

    Article  CAS  Google Scholar 

  37. Quebec Network of Applied Genetic Medicine (RMGA). Statement on the ethical conduct of genetic research involving populations. <http://www.rmga.qc.ca/doc/ENONCE2002.ENG.pdf> (2002).

  38. Nationaler Ethikrat. Biobanks for research. <http://www.nationalerethikrat.de/_english/publications/Opinion_Biobanks-for-research.pdf> (German National Ethics Council, Berlin, 2004)

  39. Wendler, D. & Emanuel, E. The debate over research on stored biological samples: what do sources think? Arch. Intern. Med. 162, 1457–1462 (2002).

    Article  Google Scholar 

  40. Hannig, V. L., Clayton, E. W. & Edwards, K. M. Whose DNA is it anyway? Relationships between families and researchers. Am. J. Med. Genet. 47, 257–260 (1993).

    Article  CAS  Google Scholar 

  41. Blatt, R. J. Banking biological collections: data warehousing, data mining, and data dilemmas in genomics and global health policy. Community Genet. 3, 204–211 (2000).

    CAS  PubMed  Google Scholar 

  42. Anderlik, M. R. & Rothstein, M. A. Privacy and confidentiality of genetic information: what rules for the new science? Annu. Rev. Genomics Hum. Genet. 2, 401–433 (2001).

    Article  CAS  Google Scholar 

  43. Green, M. J. & Botkin, J. R. 'Genetic exceptionalism' in medicine: clarifying the differences between genetic and nongenetic tests. Ann. Intern. Med. 138, 571–575 (2003).

    Article  Google Scholar 

  44. McGee, G. Foreward: genetic exceptionalism. Harv. J. Law Technol. 11, 565–570 (1998).

    CAS  PubMed  Google Scholar 

  45. HUGO Ethics Committee. Statement on benefit sharing. <http://www.hugo-international.org/hugo/benefit.html> (2000).

  46. Knoppers, B. M. Population genetics and benefit sharing. Community Genet. 3, 212–214 (2000).

    CAS  PubMed  Google Scholar 

  47. Nelkin, D. & Andrews, L. Homo economicus: commercialization of body tissue in the age of biotechnology. Hastings Cent. Rep. 28, 30–39 (1998).

    Article  Google Scholar 

  48. Bovenberg, J. Should companies set up databases in Europe? Nature Biotechnol. 18, 907 (2000).

    Article  CAS  Google Scholar 

  49. Cambon-Thomsen, A. Assessing the impact of biobanks. Nature Genet. 34, 25–26 (2003).

    Article  Google Scholar 

  50. Ohayon, E. & Cambon-Thomsen, A. (eds) Génétique des Populations Humaines. (Inserm, Paris, 1986).

    Google Scholar 

  51. Merz, J. F., McGee, G. E. & Sankar, P. 'Iceland Inc.'?: on the ethics of commercial population genomics. Soc. Sci. Med. 58, 1201–1209 (2004).

    Article  Google Scholar 

  52. Collins, F. The case for a US prospective cohort study of genes and environment. Nature 429, 475–477 (2004)

    Article  CAS  Google Scholar 

Download references

Acknowledgements

The support of Toulouse-Midi-Pyrénées-Genopole, Réseau National des Genopole (RNG) and DRESS (Direction de la Recherche, des Etudes, de l'Evaluation et des Statistiques — Mission de Recherche du Ministère de l'Emploi, du Travail et de la Cohésion Sociale et du Ministère de la Santé et de la protection sociale) in connection with the 2004 programme 'Biomedical sciences, health, society' is gratefully acknowledged.

Author information

Authors and Affiliations

  1. Institut National de la Santé et de la Recherche Médicale, Inserm U 558, Faculté de médecine, 37 allées Jules Guesde, Toulouse, F-31073, Cedex, France

    Anne Cambon-Thomsen

Authors
  1. Anne Cambon-Thomsen
    View author publications

    You can also search for this author in PubMed Google Scholar

Ethics declarations

Competing interests

The author declares no competing financial interests.

Supplementary information

Related links

Related links

FURTHER INFORMATION

Cambon-Thomsen's homepage

Human Genome Diversity Project

ISBER

Mannvernd (Association of Icelanders for Ethics in Science and Medicine)

OECD

Rights and permissions

Reprints and permissions

About this article

Cite this article

Cambon-Thomsen, A. The social and ethical issues of post-genomic human biobanks. Nat Rev Genet 5, 866–873 (2004). https://doi.org/10.1038/nrg1473

Download citation

  • Issue Date:

  • DOI: https://doi.org/10.1038/nrg1473

This article is cited by

Search

Advanced 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