Do people care what's done with their biobanked samples?

IRB Ethics and Human Research

Volumn 36, Issue 4, 2014, Pages 8-15

  Tomlinson, Tom ^a   Kaplowitz, Stan A ^b   Faulkner, Meghan ^c  

^a MICHIGAN STATE UNIVERSITY   (United States)

^b MICHIGAN STATE UNIVERSITY   (United States)

^c MICHIGAN DEPARTMENT OF COMMUNITY HEALTH   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ADULT; AGED; ARTICLE; FEMALE; HEALTH CARE FACILITY; HUMAN; LABORATORY DIAGNOSIS; MALE; MIDDLE AGED; PSYCHOLOGICAL ASPECT; PUBLIC OPINION; QUALITATIVE RESEARCH; QUESTIONNAIRE; REFUSAL TO PARTICIPATE; TRANSPLANTATION; UNITED STATES; VERY ELDERLY; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; BIOLOGICAL SPECIMEN BANKS; FEMALE; HUMANS; MALE; MICHIGAN; MIDDLE AGED; PUBLIC OPINION; QUALITATIVE RESEARCH; QUESTIONNAIRES; REFUSAL TO PARTICIPATE; SPECIMEN HANDLING; TISSUE AND ORGAN PROCUREMENT; YOUNG ADULT;

EID: 84905272618     PISSN: 01937758     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (16)

1. Hewitt RE. Biobanking: The foundation of personalized medicine. Current Opinions in Oncology 2011; 13(1):112-119
2. Schnabel RB, Baccarelli A, Lin H, et al. Next steps in cardiovascular disease genomic research-sequencing, epigenetics, and transcriptomics. Clinical Chemistry 2012; 58(1):113-126.
3. Clayton EW, Steinberg KK, Khoury M.J., et al. Informed consent for genetic research on stored tissue samples. JAMA 1995; 274(22):1786-1792
4. Greely HT. Breaking the stalemate: A prospective regulatory framework for unforseen research uses of human tissue samples and health information. Wake Forest Law Review 1999; 34(3):737-766
5. National Bioethics Advisory Commission. Research Involving Human Biological Materials: Ethical Issues and Policy Guidance. Springfield, VA: U.S. Department of Commerce, 1999
6. Office for Human Research Protections. Guidance on research involving coded private information or biological specimens, 2008, http://www.hhs.gov/ ohrp/policy/cdebiol.html.
7. Tomlinson T. Respecting donors to biobank research. Hastings Center Report 2013; 43(1):41-47.
8. Pfeffer N. What British women say matters to them about donating an aborted fetus to stem cell research: A focus group study. Social Science and Medicine 2008; 66(12):2544-2554.
9. Schwartz MD, Rothenberg K, Joseph L., 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 2001; 98(4):336-342.
10. Nair K, Willison D, Holbrook A., 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 2004; 9(1):22-27.
11. McClendon MJ. Multiple Regression and Causal Analysis. Itasca, IL:, FE Peacock, 2002.
12. Kline RB. Principles and Practices of Structural Equation Modeling, 2nd ed. New York: The Guilford Press, 2005, pp. 48-49.
13. See ref. 3, Tomlinson 2013.
14. Armstrong V, Barnett J, Cooper H., et al. Public attitudes to research governance: A qualitative study in a deliberative context. Wellcome Trust, May 2013, http://www.wellcome.ac.uk/About-us/Publications/Reports/Public-engagement/ wTX038446.htm
15. Lipworth W, Morrell B, a, et al. An empirical reappraisal of public trust in biobanking research: Rethinking restrictive consent requirements. Journal of Law and Medicine 2009; 17(1):119-132.
16. O'Doherty K.C., Hawkins A. Structuring public engagement for effective input in policy development on human tissue biobanking. Public Health Genomics 2010; 13(4):197-206.