Biobanks: Importance, implications and opportunities for genetic counselors

Journal of Genetic Counseling

Volumn 19, Issue 5, 2010, Pages 423-429

  Hawkins, Alice K ^a  

^a UNIVERSITY OF BRITISH COLUMBIA   (Canada)

Author keywords

Advocacy; Biobanks; Ethics; Genetic counseling

Indexed keywords

ETHICS; GENETIC COUNSELING; HEALTH CARE FACILITY; HUMAN; MANPOWER; REVIEW;

ETHICS; GENETIC COUNSELING; HUMANS; TISSUE BANKS;

EID: 78650018899     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-010-9305-1     Document Type: Article

References (64)

1. Anderlik, M. (2003). Commercial biobanks and genetic research: ethical and legal issues. American Journal of Pharmacogenomics, 3(3), 203-215.
2. Austin, M., Harding, S., & McElroy, C. (2003a). Genebanks: A comparison of eight proposed international genetic databases.Community Genet 6(1) 37-45.
3. Austin, M., Harding, S., & McElroy, C. (2003b). Monitoring ethical, legal, and social issues in developing population genetic databases. Genetics in medicine, 5(6), 451.
4. Australian Law Reform Commission. (2003). Essentially yours: The protection of human genetic information in Australia. Executive Summary Retrieved Jan 20th, 2010, from http://www.austlii.edu.au/au/other/alrc/ publications/reports/96/.
5. Avard, D., & Knoppers, B. (2009). Genomicmedicine: considerations for health professionals and the public. Genome Medicine, 1(2), 25.
6. Avard, D., Bucci, L., Burgess, M., Kaye, J., Heeney, C., Farmer, Y., et al. (2009). Public health genomics (PHG) and public participation: points to consider. Journal of Public Deliberation, 5(1), 1-21.
7. Barr, M. (2006). I'm not really read up on genetics: biobanks and the social context of informed consent. Biosocieties, 1, 251-262.
8. Bogert, G. G., & Bogert, G. T. (1992). The law of trusts and trustees. St. Paul: West.
9. Boulton, M., & Parker, M. (2007). Informed consent in a changing environment. Social Science & Medicine, 65(11), 2187-2198.
10. Brand, A. M., & Probst-Hensch, N. M. (2007). Biobanking for epidemiological research and public health. Pathobiology, 74, 227-238.
11. Brekke, O., & Sirnes, T. (2006). Population biobanks: the ethical gravity of informed consent. BioSocieties, 1, 385-398.
12. Busby, H. (2006). Biobanks, bioethics and concepts of donated blood in the UK. Sociology of Health and Illness, 28, 850-865.
13. Cambon-Thomsen, A. (2004). The social and ethical issues of postgenomic human biobanks. Nature Genetics, 5, 866-873.
14. Cambon-Thomsen, A., Sallée, C., Rial-Sebbag, E., & Knoppers, B. (2005). Populational genetic databases is a specific ethical and legal framework necessary? GenEdit, 3(1), 1-13.
15. Cambon-Thomsen, A., Rial-Sebbag, E., & Knoppers, B. (2007). Trends in ethical and legal frameworks for the use of human biobanks. European Respiratory Journal, 30, 373-382.
16. Caulfield, T., & Ries, N. (2003). Consent, privacy and confidentiality in longitudinal, population health research: the Canadian legal context. Health Law Journal, 11, 1.
17. Caulfield, T., Upshur, R., & Daar, A. (2003). DNA databanks and consent: a suggested policy option involving an authorization model. BMC Medical Ethics, 4(1), 1-4.
18. Caulfield, T., McGuire, A., Cho, M., Buchanan, J., Burgess, M., Danilczyk, U., et al. (2008). Research Ethics recommendations for wholegenome research: consensus statement. PLoS Biology, 6(3), 73.
19. CDC. (2007). 10 years of public health genomics at CDC 1997-2007. Retrieved Jan 13th, 2010, from http://www.cdc.gov/genomics/about/reports/2007/ index.htm.
20. Elger, B., & Caplan, A. (2006). Consent and anonymization in research involving biobanks: differing terms and norms present serious barriers to an international framework. EMBO reports, 7 (7), 661-666.
21. Eriksson, S., & Helgesson, G. (2005). Potential harms, anonymization, and the right to withdraw consent to biobank research. European Journal of Human Genetics, 13(9), 1071-1076.
22. Foltz, F. (1999). Five arguments for increasing public participation in making science policy. Bulletin of Science, Technology and Society, 19(2), 117-127.
23. Genetic Alliance BioBank: Executive Summary. (2010). Retrieved Jan 15, 2010, from http://www.biobank.org/english/view.asp?x=1364&id=76.
24. Gottweis, H., & Petersen, A. (Eds.). (2008). Biobanks: Governance in comparative perspective. New York: Routledge.
25. Greely, H. T. (2007). The uneasy ethical and legal underpinnings of large-scale genomic biobanks. Annual Review of Genomics and Human Genetics, 8, 343-364.
26. Haga, S. B., & Beskow, L. M. (2008). Ethical, legal, and social implications of biobanks for genetics research. Advances in Genetics, 60, 505-544.
27. Hansson, M. G. (2009). Ethics and biobanks. British Journal of Cancer, 100(1), 8-12.
28. Hansson, M. G., Dillner, J., Bartram, C. R., Carlson, J. A., & Helgesson, G. (2006). Should donors be allowed to give broad consent to future biobank research? Lancet Oncology, 7(3), 266-269.
29. Hoffman, B. (2009). Broadening consent and diluting ethics? Journal of Medical Ethics, 35, 125-129.
30. Homer, N., Szelinger, S., Redman, M., Duggan, D., Tembe, W., Muehling, J., et al. (2008). Resolving individuals contributing trace amounts of DNA to highly complex mixtures using highdensity SNP genotyping microarrays. PLoS Genetics, 4(8), e1000167.
31. Irwin, A. (2001). Constructing the scientific citizen: science and democracy in the biosciences. Public Understanding of Science, 10(1), 1-18.
32. Kaiser, J. (2002). Biobanks. Population databases boom, from Iceland to the U.S. Science, 298(5596), 1158-1161.
33. Kerr, A., Cunningham-Burley, S., & Tutton, R. (2007). Shifting subject positions: experts and lay people in public discourse. Social Studies of Science, 37(3), 385-411.
34. Khoury, M., Millikan, R., Little, J., & Gwinn, M. (2004). The emergence of epidemiology in the genomics age. International Journal of Epidemiology, 33(5), 936-944.
35. Knoppers, B. (2005). Biobanking: international norms. Journal of Law, Medicine and Ethics, 33, 7-14.
36. Knoppers, B., Joly, Y., Simard, J., & Durocher, F. (2006). The emergence of an ethical duty to disclose genetic research results: international perspectives. European Journal of Human Genetics, 14(11), 1170-1178.
37. Lunshof, J. E., Chadwick, R., Vorhaus, D. B., & Church, G. M. (2008). From genetic privacy to open consent. Nature Reviews. Genetics, 9(5), 406-411.
38. MacNaghten, P., Kearnes, M. B., & Wynne, B. (2005). Nanotechnology, governance and public deliberation: what role for the social sciences? Science Communication, 27, 268-291.
39. Maschke, K. J. (2005). Navigating an ethical patchwork-human gene banks. Nature Biotechnology, 23(5), 539-545.
40. McCarty, C., Wilke, R., Giampietro, P., Wesbrook, S., & Caldwell, M. (2005). Marshfield clinic personalized medicine research project (PMRP): design, methods and recruitment for a large populationbased biobank. Personalized Medicine, 2(1), 49-79.
41. McCarty, C. A., Chapman-Stone, D., Derfus, T., Giampietro, P. F., & Fost, N. (2009). Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project. American Journal of Medical Genetics, 146A, 3026-3033.
42. NSGC. (1983). Genetic counseling as a profession. Retrieved January 19th, 2010, from http://www.nsgc.org/career/index.cfm#as-a-profession.
43. O'Doherty, K., & Burgess, M. (2009). Engaging the public on biobanks: outcomes of the BC biobank deliberation. Public Health Genomics, 12(4), 203-215.
44. O'Doherty, K., & Hawkins, A. (2010). Structuring public engagement for effective input in policy development on human tissue biobanking. Public Health Genomics, 13(4), 197-206.
45. OECD. (2006). Creation and governance of human genetic research databases.
46. Park, A. (2009). Ten ideas changing the world right now. Time Magazine: US Edition, 173.
47. Petersen, A. (2005). Securing our genetic health: engendering trust in UK Biobank. Sociology of Health & Illness, 27(2), 271-292.
48. Petersen, A. (2007). Biobanks' "engagements": engendering trust or engineering consent? Genomics, Society and Policy, 3(1), 31-43.
49. Pfendner, E. G., Vanakker, O. M., Terry, S. F., Vourthis, S., McAndrew, P. E., McClain, M. R., et al. (2007). Mutation detection in the ABCC6 gene and genotype phenotype analysis in a large international case series affected by pseudoxanthoma elasticum. British Medical Journal, 44(10), 621-628.
50. Rose, H. (2006). From hype to mothballs in four years: troubles in the development of large-scale DNA biobanks in Europe. Community Genetics, 9, 184-189.
51. Rotimi, C., Leppert, M., Matsuda, I., Zeng, C., Zhang, H., Adebamowo, C., et al. (2007). Community engagement and informed consent in the International HapMap project. Community Genetics, 10(3), 186-198.
52. Rowe, G., & Frewer, L. J. (2005). A typology of public engagement mechanisms. Science, Technology & Human Values, 30(2), 251-290.
53. Secko, D. M., Preto, N., Niemeyer, S., & Burgess, M. M. (2009). Informed consent in biobank research: a deliberative approach to the debate. Social Science & Medicine, 68(4), 781-789.
54. Swede, H., Stone, C., & Norwood, B. (2007). National populationbased biobanks for genetic research. Genetics in Medicine, 9(3), 141-149.
55. Swen, J., Huizinga, T., Gelderblom, H., de Vries, E., Assendelft, W., Kirchheiner, J., et al. (2007). Translating pharmacogenomics: challenges on the road to the clinic. PLoS Medicine, 4(8), 1317-1324.
56. Tilstone, C. (2006). Further plans announced for national biobanks. Lancet Oncology, 7(3), 195-196.
57. Tutton, R. (2007). Banking expectations: the promises and problems of biobanks. Personalized Medicine, 4(4), 463-469.
58. Tutton, R., & Corrigan, O. (Eds.). (2004). Genetic databases: Socioethical issues in the collection and use of DNA. London: Routledge.
59. UK Biobank. (2009). Improving the health of future generations. Retrieved 15 Jan, 2010, from http://www.ukbiobank.ac.uk/.
60. Watson, P. H., Wilson-McManus, J. E., Barnes, R. O., Giesz, S. C., Png, A., Hegele, R. G., et al. (2009). Evolutionary concepts in biobanking-the BC BioLibrary. Journal of translational medicine, 7(1), 95.
61. Williams-Jones, B., & Burgess, M. (2006). Democratising access to genetic services. Familial Cancer, 5(2), 117-121.
62. Winickoff, D. (2006). Genome and nation: Iceland's health sector database and its legacy. Innovations: Technology, Governance, Globalization, 1(2), 80-105.
63. Winickoff, D., & Winickoff, R. (2003). The charitable trust as a model for genomic biobanks. New England Journal of Medicine, 12, 1180-1184.
64. Yuille, M., van Ommen, G. J., Brechot, C., Cambon-Thomsen, A., Dagher, G., Landegren, U., et al. (2007). Biobanking for Europe. Briefings in bioinformatics, 9, 14-24.