Journal of Cancer Education

, Volume 32, Issue 1, pp 51–58 | Cite as

Barriers and Strategies to Participation in Tissue Research Among African-American Men

  • Bettina F. Drake
  • Danielle Boyd
  • Kimberly Carter
  • Sarah Gehlert
  • Vetta Sanders Thompson
Article

Abstract

Before the burgeoning field of biospecimen collection can advance prevention and treatment methods, researchers must access diverse molecular data samples. However, minorities, especially African-American men, remain reticent to join these studies. This study, using theory-based approaches, investigated African-American men’s barriers to participating in biorepository research. Fourteen focus groups were conducted among 70 African-American men (ages 40 to 80). The groups were stratified by prostate cancer history and educational attainment background. Participants identified perceived factors that promoted or hindered study participation when questioned about their knowledge and attitudes about biospecimen research. Ninety-four percent of participants indicated never participating in a study that collected biological samples. Barriers to their participation included lack of knowledge and understanding regarding biospecimen research practices and uses. In addition, they extensively cited a prevalent mistrust of the medical community and discomfort with study recruitment practices. African-American males were more willing to participate in biorepository studies with physician endorsement or if they understood that participation could benefit future generations. Men also wanted more recruitment and advertising done in familiar places.

Keywords

African-American Biorepository Recruitment Prostate cancer 

References

  1. 1.
    National Cancer Institute, National Institutes of Health, U.S. Department of Health and Human Services: National Cancer Institute Best Practices for Biospecimen Resources. . In.; 2007Google Scholar
  2. 2.
    Advani AS, Atkeson B, Brown CL, Peterson BL, Fish L, Johnson JL, Gockerman JP, Gautier M (2003) Barriers to the participation of African-American patients with cancer in clinical trials: a pilot study. Cancer 97(6):1499–1506CrossRefPubMedGoogle Scholar
  3. 3.
    Halbert CH, Weathers B, Delmoor E, Mahler B, Coyne J, Thompson HS, Have TT, Vaughn D, Malkowicz SB, Lee D (2009) Racial differences in medical mistrust among men diagnosed with prostate cancer. Cancer 115(11):2553–2561CrossRefPubMedPubMedCentralGoogle Scholar
  4. 4.
    Moinpour CM, Atkinson JO, Thomas SM, Underwood SM, Harvey C, Parzuchowski J, Lovato LC, Ryan AM, Hill MS, Deantoni E et al (2000) Minority recruitment in the prostate cancer prevention trial. Ann Epidemiol 10(8 Suppl):S85–91CrossRefPubMedGoogle Scholar
  5. 5.
    Stallings FL, Ford ME, Simpson NK, Fouad M, Jernigan JC, Trauth JM, Miller DS (2000) Black participation in the Prostate, Lung, Colorectal and Ovarian (PLCO) Cancer Screening Trial. Control Clin Trials 21(6 Suppl):379S–389SCrossRefPubMedGoogle Scholar
  6. 6.
    Shavers VL, Lynch CF, Burmeister LF (2002) Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol 12(4):248–256CrossRefPubMedGoogle Scholar
  7. 7.
    Goddard KA, Smith KS, Chen C, McMullen C, Johnson C (2009) Biobank recruitment: motivations for nonparticipation. Biopreserv Biobank 7(2):119–121CrossRefPubMedPubMedCentralGoogle Scholar
  8. 8.
    Kiviniemi MT, Saad-Harfouche FG, Ciupak GL, Davis W, Moysich K, Hargrave NC, Ambrosone CB, Walker C, Erwin DO (2013) Pilot intervention outcomes of an educational program for biospecimen research participation. J Cancer Educ 28(1):52–59CrossRefPubMedPubMedCentralGoogle Scholar
  9. 9.
    Dash C, Wallington SF, Muthra S, Dodson E, Mandelblatt J, Adams-Campbell LL (2014) Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community. J Commun Genet 5(4):329–336CrossRefGoogle Scholar
  10. 10.
    Adams-Campbell LL, Ahaghotu C, Gaskins M, Dawkins FW, Smoot D, Polk OD, Gooding R, DeWitty RL (2004) Enrollment of African Americans onto clinical treatment trials: study design barriers. J Clin Oncol 22(4):730–734CrossRefPubMedGoogle Scholar
  11. 11.
    Ford JG, Howerton MW, Lai GY, Gary TL, Bolen S, Gibbons MC, Tilburt J, Baffi C, Tanpitukpongse TP, Wilson RF et al (2008) Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer 112(2):228–242CrossRefPubMedGoogle Scholar
  12. 12.
    Thompson VL, Drake B, James AS, Norfolk M, Goodman M, Ashford L, Jackson S, Witherspoon M, Brewster M, Colditz G: A community coalition to address cancer disparities: transitions, successes and challenges. J Cancer Educ 2014Google Scholar
  13. 13.
    Swanson GM, Ward AJ (1995) Recruiting minorities into clinical trials: toward a participant-friendly system. J Natl Cancer Inst 87(23):1747–1759CrossRefPubMedGoogle Scholar
  14. 14.
    Melas PA, Sjoholm LK, Forsner T, Edhborg M, Juth N, Forsell Y, Lavebratt C (2010) Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study. J Med Ethics 36(2):93–98CrossRefPubMedGoogle Scholar
  15. 15.
    Levickis P, Naughton G, Gerner B, Gibbons K (2013) Why families choose not to participate in research: feedback from non-responders. J Paediatr Child Health 49(1):57–62CrossRefPubMedGoogle Scholar
  16. 16.
    Streicher SA, Sanderson SC, Jabs EW, Diefenbach M, Smirnoff M, Peter I, Horowitz CR, Brenner B, Richardson LD (2011) Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study. J Commun Genet 2(3):153–163CrossRefGoogle Scholar
  17. 17.
    Halverson CM, Ross LF (2012) Attitudes of African-American parents about biobank participation and return of results for themselves and their children. J Med Ethics 38(9):561–566CrossRefPubMedPubMedCentralGoogle Scholar
  18. 18.
    Bussey-Jones J, Garrett J, Henderson G, Moloney M, Blumenthal C, Corbie-Smith G (2010) The role of race and trust in tissue/blood donation for genetic research. Genet Med 12(2):116–121CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Masters JR (2002) HeLa cells 50 years on: the good, the bad and the ugly. Nat Rev Cancer 2(4):315–319CrossRefPubMedGoogle Scholar
  20. 20.
    Beskow LM, Dean E (2008) Informed consent for biorepositories: assessing prospective participants’ understanding and opinions. Cancer Epidemiol Biomark Prev A Publ Am Assoc Cancer Res Cosponsored Am Soc Prev Oncol 17(6):1440–1451CrossRefGoogle Scholar
  21. 21.
    O’Doherty KC, Burgess MM (2009) Engaging the public on biobanks: outcomes of the BC biobank deliberation. Public Health Genomics 12(4):203–215CrossRefPubMedGoogle Scholar

Copyright information

© American Association for Cancer Education 2015

Authors and Affiliations

  • Bettina F. Drake
    • 1
    • 2
  • Danielle Boyd
    • 3
  • Kimberly Carter
    • 4
  • Sarah Gehlert
    • 1
    • 2
  • Vetta Sanders Thompson
    • 5
  1. 1.Division of Public Health Sciences, Department of SurgeryWashington University in St. Louis School of MedicineSt. LouisUSA
  2. 2.Alvin J. Siteman Cancer CenterSt. LouisUSA
  3. 3.Division of Public Health Sciences, Department of SurgeryWashington University in St. Louis School of MedicineSt. LouisUSA
  4. 4.Department of Social WorkSouthern Illinois University-EdwardsvilleEdwardsvilleUSA
  5. 5.Brown School of Social WorkWashington University in St. LouisSt. LouisUSA

Personalised recommendations