The ethics of biobanking: Key issues and controversies

Health Care Analysis

Volumn 19, Issue 3, 2011, Pages 207-219

  Widdows, Heather ^a   Cordell, Sean ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BIOETHICS; CONFIDENTIALITY; ETHICS; FEEDBACK SYSTEM; HEALTH CARE FACILITY; HUMAN; INCOME; INFORMED CONSENT; MEDICAL RESEARCH; ORGANIZATION AND MANAGEMENT; UNITED KINGDOM;

BIOETHICAL ISSUES; BIOLOGICAL SPECIMEN BANKS; BIOMEDICAL RESEARCH; CONFIDENTIALITY; FEEDBACK; GREAT BRITAIN; HUMANS; INCOME; INFORMED CONSENT; OWNERSHIP;

EID: 80855148163     PISSN: 10653058     EISSN: None     Source Type: Journal    
DOI: 10.1007/s10728-011-0184-x     Document Type: Review

References (26)

1. J Allen B McNamara 2011 Reconsidering the value of consent in biobank research Bioethics 25 3 155 166 19659851 10.1111/j.1467-8519.2009.01749.x
2. Austin, L. M., Lemmens, T. (2009). Privacy, consent, and governance. In K. Dierickx & P. Pascal Borry (Eds.). New challenges for biobanks: Ethics, law and governance, 2009. Available at: http://ssrn.com/abstract=1538512.
3. DW Brock 2001 Genetics and confidentiality American Journal of Bioethics 1 3 34 35 11954591 10.1162/152651601750417946 1:STN:280:DC%2BD383hvVyksA%3D%3D
4. A Casado Da Rocha JA Seoane 2008 Alternative consent models for Biobanks: The new Spanish law on biomedical research Bioethics 22 8 440 447 10.1111/j.1467-8519.2008.00673.x
5. Cordell, S., Bellivier, F., Widdows, H., Noivelle, C. (2011). Lost property? Legal compensation for destroyed sperm: A reflection and comparison drawing on UK and French perspectives. Forthcoming in Journal of Medical Ethics. (Published Online June 13 2011. 10.1136/jme.2010.042036 ).
6. Declaration of Helsinki (2008). Section 24. http://www.wma.net/en/ 30publications/10policies/b3/index.html.
7. S Fortin S Pathmasiri R Grintuch M Deschenes 2011 Access arrangements' for Biobanks: A fine line between facilitating and hindering collaboration Public Health Genomics 14 104 114 20689244 10.1159/000309852 1:STN:280:DC%2BC3M3jsFCkug%3D%3D
8. SHE Harmon GT Laurie 2010 Yearworth Vs North Bristol NHS Trust: Property, Principles, Precedents and Paradigms Cambridge Law Journal 69 476 493 10.1017/S0008197310000772
9. J Illes MP Kirschen E Edwards LR Stanford P Bandettini MK Cho PJ Ford GH Glover J Kulynych R Macklin DB Michael SM Wolf 2006 Ethics. Incidental findings in brain imaging research Science 311 783 784 16469905 10.1126/science.1124665 1:CAS:528:DC%2BD28XhsVCgsLw%3D (Pubitemid 43228825)
10. C Johnston J Kaye 2004 Does the UK Biobank have a legal obligation to feedback individual findings to participants? Medical Law Review 12 239 267 10.1093/medlaw/12.3.239
11. Manson, N. C., & O'Neill, O. (2007). Rethinking informed consent in bioethics. Cambridge: Cambridge University Press.
12. KJ Maschke 2006 Alternative consent approaches for biobank research Lancet Oncology 7 193 194 16510329 10.1016/S1470-2045(06)70590-3 (Pubitemid 43286445)
13. J McHale 2006 'Appropriate Consent' and the use of human material for research purposes: The competent adult Clinical Ethics 1 195 199 10.1258/147775006779151111
14. FG Miller MM Mello S Joffe 2008 Incidental findings in human subjects research: what do investigators owe research participants? Journal of Law and Medical.Ethics 36 271 279 10.1111/j.1748-720X.2008.00269.x
15. GR Mitchell K Happe 2001 Informed consent after the human genome project Rhetoric and Public Affairs 4 3 375 406 10.1353/rap.2001.0049
16. Nuremberg Code. (1949). Directives for human experimentation. http://ohsr.od.nih.gov/guidelines/nuremberg.html. 2008.
17. O'Neill, O. (2002). Autonomy and trust in bioethics. Cambridge: Cambridge Univerity Press.
18. MA Rothstein 2005 Expanding the ethical analysis of biobanks Journal of Law, Medicine and Ethics 33 89 101 10.1111/j.1748-720X.2005.tb00213.x (Pubitemid 40598047)
19. UK Biobank Ethics and Governance Framework. (2007). http://www.ukbiobank. ac.uk/docs/20071011-EGF-Version-3-1-0October-2007withTOR.pdf.
20. H Widdows 2007 Conceptualising the self in the genetic Era Health Care Analysis 15 5 12 17373127 10.1007/s10728-006-0033-5 (Pubitemid 46348821)
21. Widdows, H. (2007). Reconceptualising genetics: Challenges to traditional medical ethics. In C. Lenk, N. Hoppe, & R. Andorno (Eds.), Ethics and law of intellectual property: Current problems in politics, science and technology. Aldershot: Ashgate.
22. Widdows, H. (2009). Constructing communal models of governance. In H. Widdows & C. Mullen (Eds.), The governance of genetic information: Who decides?. Cambridge: Cambridge University Press.
23. H Widdows 2009 Between the individual and the community: The impact of genetics on ethical models New Genetics and Society 28 2 173 188 10.1080/14636770902901611
24. DE Winickoff 2003 Governing population genomics Jurimetrics 43 187 228 15156881
25. DE Winickoff RN Winickoff 2003 The charitable trust as a model for genomic biobanks New England Journal of Medicine 349 1180 1184 13679534 10.1056/NEJMsb030036 1:CAS:528:DC%2BD3sXnsV2jtbk%3D (Pubitemid 37122332)
26. Yearworth & ors v Bristol NHS Trust (2009). EWCA Civ 37 (04 February 2009).