Biobanks for genomics and genomics for biobanks

Comparative and Functional Genomics

Volumn 4, Issue 6, 2003, Pages 628-634

  Cambon Thomsen, Anne ^a   Ducournau, Pascal ^a,b   Gourraud, Pierre Antoine ^a   Pontille, David ^a,c  

^a INSERM   (France)

^b UNIVERSITÉ DE TOULOUSE   (France)

^c Centre associé Céreq de Toulouse   (France)

Author keywords

Ethics; Genetic databases; Haematopoietic stem cell donor registries; Human biobanks; Population databases; Public health genomics; Societal issues of genomics

Indexed keywords

COMMERCIAL PHENOMENA; DONOR; GENETIC DATABASE; GENETIC MARKER; GENETIC VARIABILITY; GENOMICS; HEALTH CARE FACILITY; HEALTH CARE INDUSTRY; HEALTH CARE POLICY; HEMATOPOIETIC STEM CELL; HUMAN; IMMUNOGENETICS; INFORMED CONSENT; INTERNATIONAL COOPERATION; INTERPERSONAL COMMUNICATION; MEDICAL DECISION MAKING; MEDICAL ETHICS; MEDICAL PRACTICE; MEDICAL RESEARCH; MEDICAL TECHNOLOGY; MEDICINE; PATIENT INFORMATION; PATIENT RIGHT; POPULATION GENETICS; PRIORITY JOURNAL; PRIVACY; PROCESS OPTIMIZATION; PROFESSIONAL SECRECY; REGISTER; REVIEW; SAMPLING; SCIENCE; SOCIAL ASPECT; SOCIETY;

ARENA;

EID: 0347135836     PISSN: 15316912     EISSN: None     Source Type: Journal    
DOI: 10.1002/cfg.333     Document Type: Review

References (50)

1. 1. Conference: Ethics and Biomedical Research - The Process of Balancing Benefits and Risks, 11-12 June 2001, Umeå, Sweden. http://www.eu2001.se/education/eng/docs/umea_progr_en.asp.
2. 2. Conference: Conference on Biobanks, 12-13 September 2002, Uppsala, Sweden. http://www-conference.slu.se/biobanks/index.htm.
3. 2. Conference: Ethics in Research and Science. Situation and Perspectives in the Candidate Countries to the European Union, 17-19 March 2002, Bratislava, Slovak Republic.
4. 2. Conference: Third International DNA Sampling Conference. 5-8 September 2002, Montreal, Canada.
5. 3. Conference: Biobanks for Health Workshop, 28-31 January 2003, Oslo, Norway. http://www.fhi.no/hvaskjer/biobanks_workshop.html.
6. Anderlik M. 2003. Commercial biobanks and genetic research: ethical and legal issues. Am J Pharmacogenom 3: 203-215.
7. Anderlik MR, Rothstein MA. 2001. Privacy and confidentiality of genetic information: what rules for the new science? Ann Rev Genom Hum Genet 2: 401-433.
8. Austin MA, Harding S, McElroy C. 2003. Genebanks: a comparison of eight proposed international genetic databases. Commun Genet 6: 37-45.
9. Barbour V. 2003. UK Biobank: a project in search of a protocol? Lancet 361: 1734-1738.
10. Blatt RJ. 2000. Banking biological collections: data warehousing, data mining, and data dilemmas in genomics and global health policy. Commun Genet 3: 204-211.
11. Cambon-Thomsen A. 2003. Assessing the impact of biobanks. Nature Genet 34: 25-26.
12. Cambon-Thomsen A. 2003. [Biological sample banks: ethical and legal aspects. General introduction]. Rev Epidemiol Sante Publ 51: 99.
13. Cambon-Thomsen A. 2003. La bioéthique à l'échelle de la 'biobanquomique'. L'Observatoire de la Génétique (on-line) 10: http://www.ircm.qc.ca/bioethique/obsgenetique/cadrages/ cadr2003/c_no2010_2003/c_no2010_2003_2002.html
14. Cambon-Thomsen A, Foissac A, Fort M, et al. 2003. Microsatellites in the HLA region: association with HLA Class I and Class II genes, and strategies for bone marrow donor registries. In HLA 2002: Immunobiology of the Human MHC, vol 2, Hansen J, Dupont B (eds). IHWC Press: Seattle (in press).
15. Cambon-Thomsen A, Rial-Sebbag E. 2003. [Ethical aspects of biological sample banks]. Rev Epidemiol Sante Publ 51: 101-110.
16. Cambon-Thomsen A, Rial-Sebbag E, Duchier J. 2003. [Ethical and legal aspects of biological sample banks: synthesis, practical questions and proposals]. Rev Epidemiol Sante Publ 51: 121-126.
17. Caze de Montgolfier S. 2002. 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. Thèse d'Université, Université René Descartes, Paris V, Paris.
18. Chadwick R, Berg K. 2001. Solidarity and equity: new ethical frameworks for genetic databases. Nature Rev Genet 2: 318-321.
19. Confer DL. 1997. Unrelated marrow donor registries. Curr Opin Hematol 4: 408-412.
20. Confer DL. 2001. The National Marrow Donor Program. Meeting the needs of the medically underserved. Cancer 91: 274-278.
21. Dahlquist G. 2002. [Biobanks must be used rationally. Stop quarreling about the ownership!]. Lakartidningen 99: 3484-3485.
22. Deschenes M, Cardinal G, Knoppers BM, Glass KC. 2001. Human genetic research, DNA banking and consent: a question of 'form'? Clin Genet 59: 221-239.
23. Dodson KL, Coppo PA, Confer DL. 1999. The National Marrow Donor Program: improving access to hematopoietic stem cell transplantation. Clin Transpl 121-127.
24. Editorial. 2000. Census, race and science. Nature Genet 24: 97-98.
25. ESHG. 2000. Data storage and DNA banking for biomedical research: informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective. European Society of Human Genetics. http://www.eshg.org/ESHG DNA banking bckgrnd.pdf.
26. Foissac A, Fort M, Clayton J, et al. 2001. Microsatellites in the HLA region: HLA prediction and strategies for bone marrow donor registries. Transplant Proc 33: 491-492.
27. Gahrton G, van Rood JJ, Oudshoorn M. 2003. World Marrow Donor Association (WMDA). The World Marrow Donor Association (WMDA): its goals and activities. Bone Marrow Transpl 32: 121-124.
28. Galison P, Hevly B. 1992. Big Science: The Growth of Large Scale-Research. Stanford University Press: Stanford.
29. Habermas J. 1991. Erläuterungen zur Diskursethik: Suhrkamp Verlag: Frankfurt.
30. Hansson MG, Levin M. 2003. Biobanks as Resources for Health. Uppsala University: Uppsala, 276.
31. HGDP. 1999.. Model ethical protocol for collecting DNA samples. Stanford, USA: Human Genome Diversity Project-Morrison Institute; 1999 http://www.stanford.edu/group/morrison/hgdp/protocol.html.
32. Hirtzlin I, Dubreuil C, Preaubert N, et al. 2003. An empirical survey on biobanking of human genetic material and data in six EU countries. Eur J Hum Genet 11: 475-488.
33. Hodgson SV, Popat S. 2003. Polymorphic sequence variants in medicine: a challenge and an opportunity. Clin Med 3: 260-264.
34. Hurley C. 2002. HLA diversity: detection and impact on unrelated hematopoietic stem cell donor characterization and selection. Int J Hematol 76: 152-154.
35. Issa AM. 2000. Ethical considerations in clinical pharmacogenomics research. Trends Pharmacol Sci 21: 247-249.
36. Kaiser J. 2002. Biobanks. Population databases boom, from Iceland to the U.S. Science 298: 1158-1161.
37. Kaiser J. 2002. Biobanks. Private biobanks spark ethical concerns. Science 298: 1160.
38. Kaiser J. 2003. Genomic medicine. African-American population biobank proposed. Science 300: 1485.
39. Kaye J, Martin P. 2000. Safeguards for research using large scale DNA collections. Br Med J 321: 1146-1149.
40. Lee S, Mountain J, Koenig BA. 2001. The meanings of race in the new genomics: implications for health disparities research. Yale J Health Policy Law Ethics: 33-75.
41. MADO: Optimization of typing policies for European MArrow DOnor Registries: socio-economic evaluation of molecular techniques and recruitment strategies. QLG7-CT-2001-00065 2002. In: 2003. EU R&D fifth framework programme. Quality of Life and Management of Living Resources Programme. RTD projects of Generic Nature, 13. www.euromado.org.
42. OECD 2001. Biological Resource Centres: Underpinning the Future of Life. Sciences and Biotechnology; OECD Code 932001041E1. http://oecdpublications.gfi-nb.com/cgi-bin/OECDBookShop.storefront/EN/ Product/932001041E1
43. Price DJ. 1963. Little Science, Big Science. Columbia University Press: New York.
44. Reymond MA, Steinert R, Escourrou J, Fourtanier G. 2002. Ethical, legal and economic issues raised by the use of human tissue in postgenomic research. Dig Dis 20: 257-265.
45. Rial-Sebbag E. 2003. Aspects juridiques des banques d'échantillons biologiques. Rev Epidemiol Sante Publ 51: 111-120.
46. Statement of principles: human genome research. 2000. Quebec Network of Applied Genetic Medicine (RMGA). www.rmga.qc.ca.
47. Statement on the ethical conduct of genetic research involving populations. 2002. Quebec Network of applied genetic Medicine (RMGA). www.rmga.qc.ca.
48. Stegmayr B, Asplund K. 2003. [Genetic research on blood samples stored for years in biobanks. Most people are willing to provide informed consent]. Lakartidningen 100: 618-620.
49. van Rood JJ, Schipper RF, Bakker JN, et al. 1998. Bone marrow donors worldwide and cord blood stem cell transplantation. Bone Marrow Transplant 22: S19-21.
50. Wolpe PR. 1998. The triumph of autonomy in American bioethics: a sociological view. In Bioethics and Society, DeVries R, Sudebi J (eds). Prentice Hall: Upper Saddle River; 38-59.