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Unexpected Findings in the Exploration of African American Underrepresentation in Biospecimen Collection and Biobanks

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Abstract

Racial/ethnic minorities are underrepresented in current biobanking programs. The current study utilized community-based participatory research to identify motivating factors and barriers that affect older African Americans’ willingness to donate biospecimens. The standardized phone survey was administered to 78 African Americans who are 55 years old or older and live in the metropolitan Detroit area to assess their overall willingness to donate biospecimens and what factors were associated with it. The majority of the participants were willing to donate biospecimens, along with their personal information, for medical research and indicated that they did donate biospecimens when they were asked. However, African Americans were rarely asked to participate in biobanking programs. Furthermore, African Americans were not as concerned with research exploitation or as mistrusting of medical researchers as previously thought by the medical researchers. Even if African Americans were concerned over potential research exploitation or mistrust of medical researchers, these concerns or mistrust did not translate into an actual unwillingness to participate in biobanking programs. Rather, transparency in medical research and biobanking programs was more important when predicting African Americans’ willingness to donate biospecimens for medical research. The findings suggest that underrepresentation of African Americans in current biobanking programs may not be due to their willingness/unwillingness to participate in such programs but rather due to a failure of medical researchers to approach them. Additionally, researchers and clinicians should focus on increasing the transparency of medical research and biobanking programs rather than changing African Americans’ potential negative attitudes toward them.

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Reference

  1. Khoury MJ, Millikan R, Little J, Gwinn M (2004) The emergence of epidemiology in the genomics age. Int J Epidemiol 33:936–944

    Article  PubMed  Google Scholar 

  2. Morente MM, Fernandez PL, de Alava E (2008) Biobanking: old activity or young discipline? Semin Diagn Pathol 25:317–322

    Article  PubMed  Google Scholar 

  3. Oosterhuis JW, Coebergh JW, van Veen EB (2003) Tumour banks: well-guarded treasures in the interest of patients. Nat Rev Cancer 3:73–77

    Article  CAS  PubMed  Google Scholar 

  4. Scharff DP, Mathews KJ, Jackson P et al (2010) More than Tuskegee: understanding mistrust about research participation. J Health Care Poor Underserved 21:879–897

    Article  PubMed Central  PubMed  Google Scholar 

  5. National Cancer Institute. 2012. The cancer genome atlas. http://cancergenome.nih.gov/. Accesseded 02/25/2013

  6. National Human Genome Research Institute. Building a biobank to explore mysteries of the genome. http://www.genome.gov/27550100. Accessed 05/10/2013.

  7. Bauer K, Taub S, Parsi K (2004) Ethical issues in tissue banking for research: a brief review of existing organizational policies. Theor Med Bioeth 25:113–142

    Article  PubMed  Google Scholar 

  8. Hewitt RE (2011) Biobanking: the foundation of personalized medicine. Curr Opin Oncol 23:112–119

    Article  PubMed  Google Scholar 

  9. Albain KS, Unger JM, Crowley JJ, Coltman CA Jr, Hershman DL (2009) Racial disparities in cancer survival among randomized clinical trials patients of the Southwest Oncology Group. J Natl Cancer Inst 101:984–992

    Article  PubMed Central  PubMed  Google Scholar 

  10. Crawley LM, Ahn DK, Winkleby MA (2008) Perceived medical discrimination and cancer screening behaviors of racial and ethnic minority adults. Cancer Epidemiol Biomarkers Prev 17:1937–1944

    Article  PubMed Central  PubMed  Google Scholar 

  11. Amirikia KC, Mills P, Bush J, Newman LA (2011) Higher population-based incidence rates of triple-negative breast cancer among young African-American women: implications for breast cancer screening recommendations. Cancer 117:2747–2753

    Article  PubMed Central  PubMed  Google Scholar 

  12. American Cancer Society. 2013. Cancer facts and figures 2013. http://www.cancer.org/research/cancerfactsstatistics/cancerfactsfigures2013/index. Accessed 05/15/2013.

  13. Howlader N, Noone AM, Krapcho M, Garshell J, Neyman N, Altekruse SF, Kosary CL, Yu M, Ruhl J, Tatalovich Z, Cho H, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA (2013) SEER cancer statistics review, 1975–2010. National Cancer Institute, Bethesda, pp 1975–2010

    Google Scholar 

  14. McCarty CA, Chapman-Stone D, Derfus T, Giampietro PF, Fost N (2008) Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project. Am J Med Genet A 146A:3026–3033

    Article  PubMed Central  PubMed  Google Scholar 

  15. Ormond KE, Cirino AL, Helenowski IB, Chisholm RL, Wolf WA (2009) Assessing the understanding of biobank participants. Am J Med Genet A 149A:188–198

    Article  CAS  PubMed  Google Scholar 

  16. Roden DM, Pulley JM, Basford MA et al (2008) Development of a large-scale de-identified DNA biobank to enable personalized medicine. Clin Pharmacol Ther 84:362–369

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  17. Axler RE, Irvine R, Lipworth W, Morrell B, Kerridge IH (2008) Why might people donate tissue for cancer research? Insights from organ/tissue/blood donation and clinical research. Pathobiology 75:323–329

    Article  PubMed  Google Scholar 

  18. Erwin DO, Moysich K, Kiviniemi MT et al (2013) Community-based partnership to identify keys to biospecimen research participation. J Cancer Educ 28:43–51

    Article  PubMed Central  PubMed  Google Scholar 

  19. Luque JS, Quinn GP, Montel-Ishino FA et al (2012) Formative research on perceptions of biobanking: what community members think. J Cancer Educ 27:91–99

    Article  PubMed Central  PubMed  Google Scholar 

  20. Byrd GS, Edwards CL, Kelkar VA et al (2011) Recruiting intergenerational African American males for biomedical research studies: a major research challenge. J Natl Med Assoc 103:480–487

    PubMed  Google Scholar 

  21. Corbie-Smith G, Thomas SB, St George DM (2002) Distrust, race, and research. Arch Intern Med 162:2458–2463

    Article  PubMed  Google Scholar 

  22. Gamble VN (1993) A legacy of distrust: African Americans and medical research. Am J Prev Med 9:35–38

    CAS  PubMed  Google Scholar 

  23. Gorelick PB, Harris Y, Burnett B, Bonecutter FJ (1998) The recruitment triangle: reasons why African Americans enroll, refuse to enroll, or voluntarily withdraw from a clinical trial. An interim report from the African-American Antiplatelet Stroke Prevention Study (AAASPS). J Natl Med Assoc 90:141–145

    PubMed Central  CAS  PubMed  Google Scholar 

  24. Shavers-Hornaday VL, Lynch CF, Burmeister LF, Torner JC (1997) Why are African Americans under-represented in medical research studies? Impediments to participation. Ethn Health 2:31–45

    Article  CAS  PubMed  Google Scholar 

  25. Sheikh A (2006) Why are ethnic minorities under-represented in US research studies? PLoS Med 3:e49

    Article  PubMed Central  PubMed  Google Scholar 

  26. Simmonds G (2008) African American participation in public health research. ABNF J 19:69–72

    PubMed  Google Scholar 

  27. Kiviniemi MT, Saad-Harfouche FG, Ciupak GL et al (2013) Pilot intervention outcomes of an educational program for biospecimen research participation. J Cancer Educ 28:52–59

    Article  PubMed Central  PubMed  Google Scholar 

  28. Chadiha LA, Washington OG, Lichtenberg PA et al (2011) Building a registry of research volunteers among older urban African Americans: recruitment processes and outcomes from a community-based partnership. Gerontologist 51(Suppl 1):S106–S115

    Article  PubMed Central  PubMed  Google Scholar 

  29. Hall MA, Camacho F, Dugan E, Balkrishnan R (2002) Trust in the medical profession: conceptual and measurement issues. Health Serv Res 37:1419–1439

    Article  PubMed Central  PubMed  Google Scholar 

  30. Shaffer JP (1995) Multiple hypothesis testing. Annu Rev Psychol 46:561–584

    Article  Google Scholar 

  31. Goldman R, Kingdon C, Wasser J et al (2008) Rhode Islanders’ attitudes towards the development of a statewide genetic biobank. Personal Med 5:339–359

    Article  Google Scholar 

  32. Kennedy BR, Mathis CC, Woods AK (2007) African Americans and their distrust of the health care system: healthcare for diverse populations. J Cult Divers 14:56–60

    PubMed  Google Scholar 

  33. Brawley OW, Tejeda H (1995) Minority inclusion in clinical trials issues and potential strategies. J Natl Cancer Inst Monogr:55–57.

  34. Compton C (2007) Cancer biobanking: the American perspective. Eur J Cancer Suppl 5:5–6

    Article  Google Scholar 

  35. Ajzen I (2012) The theory of planned behavior. In: Lange PAMV, Kruglanski AW, Higgins ET (eds) Handbook of theories of social psychology, vol 1. Sage Publications Ltd, Thousand Oaks, pp 438–459

    Chapter  Google Scholar 

  36. Armitage CJ, Conner M (2000) Social cognition models and health behaviour: a structured review. Psychol Health 15:173–189

    Article  Google Scholar 

  37. Lichtenberg PA (2011) The generalizability of a participant registry for minority health research. Gerontologist 51(Suppl 1):S116–S124

    Article  PubMed Central  PubMed  Google Scholar 

  38. Bohner G, Dickel N (2011) Attitudes and attitude change. Annu Rev Psychol 62:391–417

    Article  PubMed  Google Scholar 

  39. Petty RE, Wegener DT (1998) Attitude change: multiple roles for persuasion variables. In: Gilbert DT, Fiske ST, Lindzey G (eds) The handbook of social psychology, vol 1 and 2, 4th edn. McGraw-Hill, New York, pp 323–390

    Google Scholar 

  40. Brewer MB (ed) (1988) A dual process model of impression formation. Erlbaum, Mahwah

    Google Scholar 

  41. Fiske ST, Lin MH, Neuberg SL (eds) (1999) The continuum model: ten years later. Guilford, New York

    Google Scholar 

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Acknowledgment

We would like to thank the members of our community-based Research Advisory Committee, Detroit Area Agency on Aging, Interfaith Health and Hope Coalition, and Pro-Literacy Detroit, for their strong commitment and significant contribution to this project. This project was supported by NCI center grants (U54 CA153606-03, U01CA114583, P30CA022453) to the Karmanos Cancer Institute/Wayne State University and NIH grant (5P30 AG015281) to the Michigan Center for Urban African American Aging Research

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Authors and Affiliations

  1. Department of Psychology, Virginia Commonwealth University, 808 West Franklin Street, P.O. Box, 842018, Richmond, VA, 23284, USA

    Nao Hagiwara

  2. Population Studies and Disparities Research Program, Karmanos Cancer Institute, Department of Oncology, Wayne State University School of Medicine, 4100 John R., MM03CB, Detroit, MI, 48201, USA

    Lisa Berry-Bobovski, Carie Francis, Lauren Ramsey & Terrance L. Albrecht

  3. Josephine Ford Cancer Center, Henry Ford Health System, 2799 W. Grand Blvd, Detroit, MI, 48202, USA

    Robert A. Chapman

  4. Department of Psychology, Virginia Commonwealth University, 808 West Franklin Street, P.O. Box 842018, Richmond, VA, 23284-2018, USA

    Nao Hagiwara

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  1. Nao Hagiwara
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  2. Lisa Berry-Bobovski
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  3. Carie Francis
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  4. Lauren Ramsey
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Correspondence to Nao Hagiwara.

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Hagiwara, N., Berry-Bobovski, L., Francis, C. et al. Unexpected Findings in the Exploration of African American Underrepresentation in Biospecimen Collection and Biobanks. J Canc Educ 29, 580–587 (2014). https://doi.org/10.1007/s13187-013-0586-6

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  • DOI: https://doi.org/10.1007/s13187-013-0586-6

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