Background/Aims: Despite the investments being made to develop biobanks, African Americans are under-represented in genomic studies. We identified factors having significant independent associations with intentions to donate personal health information and blood and/or tissue samples to a biobank in a national random sample of African Americans (n = 1,033). Methods: We conducted a national survey from October 2010 through February 2011. Results: Twenty-three percent of respondents reported that it was not at all likely that they would donate to a biobank, 18% reported it was a little likely, 36% reported it was somewhat likely, and 23% reported it was very likely. Respondents who were likely to donate to a biobank had greater positive expectations about participating in cancer genetics research and reported more participation facilitators relative to barriers. Respondents who were distrustful of researchers had a significantly lower likelihood of being willing to donate to a biobank compared to those who were less distrustful. Conclusions: African Americans have diverse attitudes about participating in genetics research, and many are likely to donate to a biobank based on expectations of positive outcomes. It may be important to address attitudes about genetics research as part of recruitment to enhance the quality of informed consent for participation in biobanks among African Americans.

Keywords:
African Americans, Attitudes, Biobanking
1.
Anton-Culver H, Ziogas A, Bowen D, Finkelstein D, Griffin C, Hanson J, Isaacs C, Kasten-Sportes C, Mineau G, Nadkarni P, Rimer B, Schildkraut J, Strong L, Weber B, Winn D, Hiatt R, Nayfield S: The Cancer Genetics Network: recruitment results and pilot studies. Community Genet 2003;6:171-177.
2.
Austin MA, Harding S, McElroy C: Genebanks: a comparison of eight proposed international genetic databases. Community Genet 2003;6:37-45.
3.
Kaiser J: Genomic medicine. African-American population biobank proposed. Science 2003;300:1485.
4.
Mailman MD, Feolo M, Jin Y, Kimura M, Tryka K, Bagoutdinov R, Hao L, Kiang A, Paschall J, Phan L, Popova N, Pretel S, Ziyabari L, Lee M, Shao Y, Wang ZY, Sirotkin K, Ward M, Kholodov M, Zbicz K, Beck J, Kimelman M, Shevelev S, Preuss D, Yaschenko E, Graeff A, Ostell J, Sherry ST: The NCBI dbGaP database of genotypes and phenotypes. Nat Genet 2007;39:1181-1186.
5.
Massett HA, Atkinson NL, Weber D, Myles R, Ryan C, Grady M, Compton C: Assessing the need for a standardized cancer HUman Biobank (caHUB): findings from a national survey with cancer researchers. J Natl Cancer Inst Monogr 2011;8-15.
6.
Shaw PM, Patterson SD: The value of banked samples for oncology drug discovery and development. J Natl Cancer Inst Monogr 2011;46-49.
7.
Vaught J, Rogers J, Myers K, Lim MD, Lockhart N, Moore H, Sawyer S, Furman JL, Compton C: An NCI perspective on creating sustainable biospecimen resources. J Natl Cancer Inst Monogr 2011;1-7.
8.
National Bioethics Advisory Commission: Research Involving Human Biological Materials: Ethical Issues and Policy Guidance, vol 1. Rockville, National Bioethics Advisory Commission, 1999.
9.
U.S. Department of Health and Human Services: Summary of the HIPAA Privacy Rule. 2003. www.hhs.gov/ocr/privacy/hipaa/understanding/summary/index.html.
10.
Lemke AA, Wolf WA, Hebert-Beirne J, Smith ME: Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics 2010;13:368-377.
11.
McQuillan GM, Pan Q, Porter KS: Consent for genetic research in a general population: an update on the National Health and Nutrition Examination Survey experience. Genet Med 2006;8:354-360.
12.
Bussey-Jones J, Garrett J, Henderson G, Moloney M, Blumenthal C, Corbie-Smith G: The role of race and trust in tissue/blood donation for genetic research. Genet Med 2010;12:116-121.
13.
Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL: Public opinion about the importance of privacy in biobank research. Am J Hum Genet 2009;85:643-654.
14.
Haga SB: Impact of limited population diversity of genome-wide association studies. Genet Med 2010;12:81-84.
15.
Halverson CM, Ross LF: Incidental findings of therapeutic misconception in biobank-based research. Genet Med 2012;14:611-615.
16.
Montano DE, Kasprzyk D: Theory of reasonsed action, theory of planned behavior, and the integrated behavioral model; in Glanz K, Rimer B, Viswanath K (eds): Health Behavior and Health Education. Theory, Research, and Practice. San Francisco, John Wiley & Sons, 2008, pp 67-96.
17.
McDonald JA, Barg FK, Weathers B, Guerra CE, Troxel AB, Domchek S, Bowen D, Shea JA, Halbert CH: Understanding participation by African Americans in cancer genetics research. J Natl Med Assoc 2012;104:324-330.
18.
Hughes C, Gomez-Caminero A, Benkendorf J, Kerner J, Isaacs C, Barter J, Lerman C: Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk. Patient Educ Couns 1997;32:51-62.
19.
Kessler L, Collier A, Brewster K, Smith C, Weathers B, Wileyto EP, Halbert CH: Attitudes about genetic testing and genetic testing intentions in African American women at increased risk for hereditary breast cancer. Genet Med 2005;7:230-238.
20.
Kessler L, Collier A, Halbert CH: Knowledge about genetics among African Americans. J Genet Couns 2007;16:191-200.
21.
Halbert CH, Armstrong K, Gandy OH Jr, Shaker L: Racial differences in trust in health care providers. Arch Intern Med 2006;166:896-901.
22.
McDonald JA, Weathers B, Barg FK, Troxel AB, Shea JA, Bowen D, Guerra CE, Halbert CH: Donation intentions for cancer genetics research among African Americans. Genet Test Mole Biomarkers 2012;16:252-258.
23.
Lemke AA, Halverson C, Ross LF: Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago. Am J Med Genet 2012;158A:1029-1037.
24.
Pew Research Institute: Assessing the representativeness of public opinion surveys. 2012. http://www.people-press.org/2012/05/15/assessing-the-representativeness-of-public-opinion-surveys/.
25.
Halbert CH, Kessler L, Stopfer JE, Domchek S, Wileyto EP: Low rates of acceptance of BRCA1 and BRCA2 test results among African American women at increased risk for hereditary breast-ovarian cancer. Genet Med 2006;8:576-582.
26.
McQuillan GM, Porter KS, Agelli M, Kington R: Consent for genetic research in a general population: the NHANES experience. Genet Med 2003;5:35-42.
27.
Moorman PG, Skinner CS, Evans JP, Newman B, Sorenson JR, Calingaert B, Susswein L, Crankshaw TS, Hoyo C, Schildkraut JM: Racial differences in enrolment in a cancer genetics registry. Cancer Epidemiol Biomarker Prev 2004;13:1349-1354.
28.
Hughes C, Peterson SK, Ramirez A, Gallion KJ, McDonald PG, Skinner CS, Bowen D: Minority recruitment in hereditary breast cancer research. Cancer Epidemiol Biomarker Prev 2004;13:1146-1155.
29.
National Institutes of Health: NIH Guideline on the Inclusion of Women and Minorities as Subjects in Clinical Research. http://grants.nih.gov/grants/funding/women_min/guidelines_update.htm.
30.
National Heart, Lung, and Blood Institute: Questions and Answers on Inclusion of Minorities and Women in Study Populations. http://www.nhlbi.nih.gov/funding/policies/nhlbigui.htm.
© 2014 S. Karger AG, Basel
2014
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