The social and ethical issues of post-genomic human biobanks

Nature Reviews Genetics

Volumn 5, Issue 11, 2004, Pages 866-873

  Cambon Thomsen, Anne ^a  

^a INSERM   (France)

Author keywords

[No Author keywords available]

Indexed keywords

DONOR; ETHICS; EUROPE; GENOMICS; HEALTH CARE FACILITY; HUMAN; MEDICAL ETHICS; POLITICS; PRIORITY JOURNAL; RESOURCE MANAGEMENT; REVIEW; SOCIAL ASPECT;

BIOMEDICAL AND BEHAVIORAL RESEARCH; GENETICS AND REPRODUCTION;

BIOETHICS; BIOLOGICAL SPECIMEN BANKS; HUMANS; SOCIAL CONTROL, FORMAL;

EID: 7644232196     PISSN: 14710056     EISSN: None     Source Type: Journal    
DOI: 10.1038/nrg1473     Document Type: Review

References (52)

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).
2. Steinberg, K. et al. DNA banking for epidemiologic studies: a review of current practices. Epidemiology 13, 246-254 (2002).
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)..
5. Hansson, M. G. & Levin, M. (eds) Biobanks as Resources for Health (Uppsala Univ., Uppsala, 2003).
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).
8. Cambon-Thomsen, A. & Rial-Sebbag, E. Aspects ́thiques des banques d'échantillons biologiques. Rev. Epidemiol. Santé Publique 51, 101-110 (2003) (in French).
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).
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).
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/0013/001312/1312 04e.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).
18. Sallée, C. in OECD Workshop on Human Genetic Research Databases: Issues or Privacy and Security (ed. OECD) 47 (OECD, Tokyo, 2004).
19. Austin, M. A., Handing, S. & McElroy, C. Genebanks: a comparison of eight proposed international genetic databases. Community Genet. 6, 37-45 (2003).
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).
21. Knoppers, B. M. (ed.) Populations and Genetics. Legal and Socio-ethical Perspectives (Martinus Nijhoff, Leiden, 2003).
22. Barbour, V. UK Biobank: a project in search of a protocol? Lancet 361, 1734-1738 (2003).
23. Knoppers, B. M. (ed.) Human DNA: Law and Policy. International and Comparative Perspectives (Kluwer Law International, Boston, 1997).
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).
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).
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).
27. Sade, R. M. Research on stored biological samples is still research. Arch. Intern. Med. 162, 1439-1440 (2002).
28. Chadwick, R. & Berg, K. Solidarity and equity: new ethical frameworks for genetic databases. Nature Rev. Genet. 2, 318-321 (2001).
29. Kaye, J. Genetic research on the UK population - do new principles need to be developed? Trends Mol. Med. 7, 528-530 (2001).
30. Greely, H. T. Informed consent and other ethical issues in human population genetics. Annu. Rev. Genet. 35, 785-800 (2001).
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).
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).
33. Harkin, M. The devil, the details, and the HGDP. Politics Life Sciences 18, 301-303 (1999).
34. Lock, M. Interrogating the Human Diversity Genome Project. Soc. Sci. Med. 39, 603-606 (1994).
35. Weiss, K. M. et al. Proposed model ethical protocol for collecting DNA samples. Houst. Law Rev. 33, 1431-1474 (1997).
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).
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).
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).
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).
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).
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).
44. McGee, G. Foreward: genetic exceptionalism. Harv. J. Law Technol. 11, 565-570 (1998).
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).
47. Nelkin, D. & Andrews, L. Homo economicus: commercialization of body tissue in the age of biotechnology. Hastings Cent. Rep. 28, 30-39 (1998).
48. Bovenberg, J. Should companies set up databases in Europe? Nature Biotechnol. 18, 907 (2000).
49. Cambon-Thomsen, A. Assessing the impact of biobanks. Nature Genet. 34, 25-26 (2003).
50. Ohayon, E. & Cambon-Thomsen, A. (eds) Génétique des Populations Humaines. (Inserm. Paris, 1986).
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).
52. Collins, F. The case for a US prospective cohort study of genes and environment. Nature 429, 475-477 (2004)