Differences in preferences for models of consent for biobanks between Black and White women
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Biobanks are essential resources, and participation by individuals from diverse groups is needed. Various models of consent have been proposed for secondary research use of biospecimens, differing in level of donor control and information received. Data are needed regarding participant preferences for models of consent, particularly among minorities. We conducted qualitative semi-structured interviews with 60 women to examine their attitudes about different models of consent. Recruitment was stratified by race (Black/White) and prior biobank participation (yes/no). Two coders independently coded interview transcripts. Qualitative thematic analysis was conducted using NVivo 10. The majority of Black and White participants preferred “broad” consent (i.e., blanket permission for secondary research use of biospecimens), and the second most preferred model for both groups was “study-specific” consent (i.e., consent for each future research study). The qualitative analysis showed that participants selected their most preferred model for 3 major reasons: having enough information, having control over their sample, and being asked for permission. Least preferred was notice model (i.e., participants notified that biospecimens may be used in future research). Attitudes toward models of consent differed somewhat by race and prior biobank participation. Participants preferred models of consent for secondary research use of biospecimens that provided them with both specific and general information, control over their biospecimens, and asked them to give permission for use. Our findings suggest that it will be important for researchers to provide information about future uses of biospecimens to the extent possible and have an explicit permission step for secondary research use.
KeywordsBiobanks Informed consent Race/ethnicity Participant preferences
This project was supported by grant number U54CA153460-03S1, a supplement to the Program for the Elimination of Cancer Disparities grant from the National Cancer Institute. We thank all of our community partners, The Breakfast Club, Inc., Siteman Cancer Center and Women’s Health Repository. We thank the 60 women who participated in the study and shared their opinions. We also thank Melissa Lovell, MPH. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute.
Conflict of interest
Katherine M. Brown, Bettina F. Drake, Sarah Gehlert, Leslie E. Wolf, James DuBois, Joann Seo, Krista Woodward, Hannah Perkins, Melody S. Goodman, and Kimberly A. Kaphingst declare they have no conflicts of interest.
Compliance with ethics guidelines
Human subject research
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.
- Davey Smith G, Ebrahim S, Lewis S, Hansell A, Palmer L, Burton P (2005) Genetic epidemiology and public health: hope, hype, and future prospects. Lancet 366:1484–1498Google Scholar
- Hoeyer K, Olofsson BO, Mjorndal T, Lynoe N (2004) Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research Scandinavian. J Public Health 32:224–229Google Scholar
- Khoury MJ, Millikan R, Little J, Gwinn M (2004) The emergence of epidemiology in the genomics age International. J Epidemiol 33:936–944Google Scholar
- Master Z, Claudio JO, Rachul C, Wang JC, Minden MD, Caulfield T (2013) Cancer patient perceptions on the ethical and legal issues related to biobanking. BMC Med Genet 6:8Google Scholar
- Mello MM, Wolf LE (2010) The Havasupai Indian tribe case-lessons for research involving stored biologic samples. N Engl J Med 363:204–207Google Scholar
- Miles M, Huberman A (1994) Qualitative Data Analysis. Sage Publications, Thousand Oaks, CAGoogle Scholar
- Murphy J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K (2009) Public perspectives on informed consent for biobanking American. J Public Health 99:2128–2134Google Scholar
- Pulley J, Clayton E, Bernard GR, Roden DM, Masys DR (2010) Principles of human subjects protections applied in an Opt‐Out. De‐identified Biobank ClinTranslational Sci 3:42–48Google Scholar
- Stjernschantz Forsberg J, Hansson MG, Eriksson S (2011) Biobank research: who benefits from individual consent? BMJ 343Google Scholar
- U.S. Census Bureau (2012) 2010 Census Demographic Profile Summary File - Technical Document. http://quickfacts.census.gov/qfd/states/29/29510.html. Accessed 1 July 2015
- U.S. Department of Health and Human Services (2009) Code of Federal Regulations - Title 45 Public Welfare CFR 46Google Scholar
- U.S. Department of Health and Human Services (2011) Human Subjects Research Protection: Enhancing Protections for Research Subjects and Reducing Burden, Delay and Ambiguity for Investigators vol 76. https://www.federalregister.gov/articles/2011/07/26/2011-18792/human-subjects-research-protections-enhancing-protections-for-research-subjects-and-reducing-burden. Accessed 1 July 2015
- Vermeulen E et al (2009) Obtaining ‘fresh’ consent for genetic research with biological samples archived 10 years ago. Eur J Cancer 45(7):1168–1174 Google Scholar