Respecting Donors to Biobank Research

Hastings Center Report

Volumn 43, Issue 1, 2013, Pages 41-47

  Tomlinson, Tom ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; DONOR; ETHICS; HEALTH CARE FACILITY; HUMAN; INFORMED CONSENT; MEDICAL RESEARCH;

BIOMEDICAL RESEARCH; CONSENT FORMS; HUMANS; INFORMED CONSENT; TISSUE BANKS; TISSUE DONORS;

EID: 84872370042     PISSN: 00930334     EISSN: 1552146X     Source Type: Journal    
DOI: 10.1002/hast.115     Document Type: Article

References (17)

1. National Bioethics Advisory Commission, Research Involving Human Biological Materials: Ethical Issues and Policy Guidance, (Rockville, Md.: National Bioethics Advisory Committee, 1999), at http://bioethics.georgetown.edu/nbac/hbm.pdf; Offce for Human Research Protections, "Guidance on Research Involving Coded Private Information or Biological Specimens," October 16, 2008, http://www.hhs.gov/ohrp/policy/cdebiol.html; M.A. Rothstein, "Expanding the Ethical Analysis of Biobanks," Journal of Law, Medicine, and Ethics 33, no. 1 (2005): 89-101.
2. B. Morrell et al., "Cancer as Rubbish: Donation of Tumor Tissue for Research," Qualitative Health Research 21, no. 1 (2011): 75-84.
3. A. Buchanan, "An Ethical Framework for Biological Samples Policy," in National Bioethics Advisory Commission, Research Involving Human Biological Materials: Ethical Issues and Policy Guidance, Vol. 2 (Rock-ville, Md.: National Bioethics Advisory Commission, 2000): B-1-B-31, at http://bioethics.georgetown.edu/nbac/hbmII.pdf.
4. N. Pfeffer, "What British Women Say Matters to Them about Donating an Aborted Fetus to Stem Cell Research: A Focus Group Study," Social Science and Medicine 66, no. 12 (2008): 2544-54.
5. G.Q. Daley et al., "Ethics: The ISSCR Guidelines for Human Embryonic Stem Cell Research," Science 315 (2007): 603-4.
6. M.D. Schwartz et al., "Consent to the Use of Stored DNA for Genetics Research: A Survey of Attitudes in the Jewish Population," American Journal of Medical Genetics 98, no. 4 (2001): 336-42.
7. G.M. McQuillan et al., "Consent for Genetic Research in a General Population: The NHANES Experience," Genetics in Medicine 5, no. 1 (2003): 35-42.
8. E.A. Nwulia et al., "Ethnic Disparities in the Perception of Ethical Risks from Psychiatric Genetic Studies," American Journal of Medical Genetics Part B: Neuropsychiatric Genetics 156, no. 5 (2011): 569-80.
9. Wellcome Trust and Medical Research Council, Public Perceptions of the Collection of Human Biological Samples, (London: Wellcome Trust, 2000), at http://www.ukbiobank.ac.uk/wp-content/up-loads/2011/07/Public-Perceptions-Collec-tion-Human-Biological-Samples.pdf?phpMyAdmin=trmKQlYdjjnQIgJ%2CfAzikMhEnx6.
10. K. Nair et al., "Patients' Consent Preferences Regarding the Use of Their Health Information for Research Purposes: A Qualitative Study," Journal of Health Services Research and Policy 9, no. 1 (2004): 22-27.
11. D. Wendler and E. Emanuel, "The Debate over Research on Stored Biological Samples: What Do Sources Think?" Archives of Internal Medicine 162, no. 13 (2002): 1457-62.
12. D. Wendler, "One-Time General Consent for Research on Biological Samples," British Medical Journal 332 (2006): 544-47.
13. D.J. Willison et al., "Alternatives to Project-Specific Consent for Access to Personal Information for Health Research: What Is the Opinion of the Canadian Public?" Journal of the American Medical Informatics Association 14, no. 6 (2007): 706-712.
14. S.C. Hull et al., "Patients' Views on Identifability of Samples and Informed Consent for Genetic Research," American Journal of Bioethics 8, no. 10 (2008): 62-70.
15. C. Kutz, "Acting Together," Philosophy and Phenomenological Research 61, no. 1 (2000): 1-31.
16. B. Godard et al., "Strategies for Consulting with the Community: The Cases of Four Large-Scale Genetic Databases," Science and Engineering Ethics 10, no. 3 (2004): 457-77.
17. T. Caulfeld et al., "DNA Databanks and Consent: A Suggested Policy Option Involving an Authorization Model," BioMed Central Medical Ethics 4 (2003): 1, at http://www.biomedcentral.com/1472-6939/4/1; H.T. Greely, "Breaking the Stalemate: A Prospective Regulatory Framework for Unforeseen Research Uses of Human Tissue Samples and Health Information," Wake Forest Law Review 34, no. 3 (1999): 737-66.