Skip to main content
SpringerLink
Log in

Engaging diverse populations about biospecimen donation for cancer research

  • Original Article
  • Published:
Journal of Community Genetics Aims and scope Submit manuscript

Abstract

Clinical research increasingly relies upon the availability of appropriate genetic materials; however, the proportion of biospecimens from racial/ethnic minority patients and healthy controls are underrepresented, which preclude equitable research across all patient groups for cancer treatment. National Cancer Institute-funded Community Network Program Centers in California, Florida, and New York collaborated with local community partners to conduct three independent formative research studies with diverse (African American, Asian American, Hispanic, and White) participants to explore their knowledge, attitudes, and beliefs about biobanking, and their experiences with the donation of biospecimens. Our findings demonstrated similarities in overall low knowledge and understanding about the use of biospecimens for research. This was exacerbated for non-English speakers. Racial and ethnic groups differed with regard to a number of factors that are obstacles for participation, e.g., continuing medical mistrust (African Americans), lack of benefit (Hispanics), apprehension about the physical toll of donating (Vietnamese), usage of biospecimen for research (Hmong and Chinese), and suspicion of exploitation by corporate entities (Whites). However, participants uniformly reported general interest and willingness to participate in biobanking for altruistic purposes, particularly to benefit future generations. This interest was framed with a strong admonition that donations should be accompanied by transparency about study sponsorship and ownership, distribution and use of biospecimens, and study information that fit participants’ backgrounds and experiences. This cross-cultural regional analysis offers significant insights into the similarities and variations in opinions and perceptions about biobanking and the collection of biospecimens for use in cancer research.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Anderson DL (2004) A guide to patient recruitment and retention. Thomson Centerwatch, Boston

    Google Scholar 

  • Bastani R, Glenn BA, Taylor VM, Chen MS Jr, Nguyen TT, Stewart SL et al (2010) Integrating theory into community interventions to reduce liver cancer disparities: the health behavior framework. Prev Med 50:63–67

    Article  PubMed Central  PubMed  Google Scholar 

  • Bernard HR (ed) (1998) Handbook of methods in cultural anthropology. AltaMira, Walnut Creek, CA

    Google Scholar 

  • Borkan J (1999) Immersion/crystallization. In: Crabtree BF, Miller WL (eds) Doing qualitative research, 2nd edn. Sage, Thousand Oaks, CA, pp 179–194

    Google Scholar 

  • Braun KL, Nguyen TT, Tanjasiri SP, Campbell J, Heiney SP, Brandt HM et al (2012) Operationalization of community-based participatory research principles: assessment of the National Cancer Institute’s community network programs. Am J Public Health 102:1195–1203. doi:10.2105/AJPH.2011.300304

    Article  PubMed Central  PubMed  Google Scholar 

  • Bruner DW, Jones M, Buchanan D (2006) Reducing cancer disparities for minorities: a multidisciplinary research agenda to improve patient access to health systems, clinical trials and effective cancer therapy. J Clin Oncol 24:2209–2215

    Article  PubMed  Google Scholar 

  • Burchard EG, Ziv E, Coyle N, Gomez SL, Tang H, Karter AJ et al (2003) The importance of race and ethnic background in biomedical research and clinical practice. N Engl J Med 348:1170–1175

    Article  PubMed  Google Scholar 

  • Cha D (2003) Hmong American concepts of health, healing, and conventional medicine. Routledge, New York

    Google Scholar 

  • Chen MS Jr., Lara PN, Dang JHT, Paterniti DA, Kelly K (2014) Twenty years post-NIH Revitalization Act: laying the groundwork for improving minority clinical trial accrual: renewing the case for enhancing minority participation in cancer clinical trials. Cancer 2014. In press

  • Dang JT, Chen MS Jr. (2011) Engaging Asian American communities in biospecimen contribution for cancer research. Cancer Epidemiol Biomarkers Prev. September 18, 2011; 20:A28; DISP-11-A28.

  • Elk R, Landrine H (eds) (2012) Cancer disparities: causes and evidence-based solutions. Springer, New York

    Google Scholar 

  • Epstein S (2008) The rise of ‘recruitmentology’: clinical research, racial knowledge, and the politics of inclusion and difference. Soc Stud Sci 38(5):801–832

    Article  PubMed  Google Scholar 

  • Erwin DO, Moysich KB, Kiviniemi MT, Saad-Harfouche FG, Davis W, Clark-Hargrave N, Ciupak GL, Ambrosone CB, Walker C (2013) Community-based partnership to identify keys to biospecimen research participation. J Cancer Educ 28(1):43–51

    Article  PubMed Central  PubMed  Google Scholar 

  • EthnoMed: Hmong cultural profile [Internet]. University of Washington; (c1995–2012). Harborview Medical Center. Available from: http://ethnomed.org/culture/hmong/hmong-cultural-profile. Accessed 11 Feb 2014

  • EthnoMed: Vietnamese cultural profile [Internet]. University of Washington; (c1995–2012) [updated Dec 2010]. Harborview Medical Center. Available from: http://ethnomed.org/culture/vietnamese/vietnamese-cultural-profile. Accessed 11 Feb 2014

  • Fisher J (2009) Research for hire: the political economy of pharmaceutical clinical trials. Rutgers University Press, New Brunswick, NJ

    Google Scholar 

  • Fong M, Braun KL, Chang M (2004) Native Hawaiian preferences for informed consent and disclosure of results from research using stored biological specimens. Pac Health Dialog 11(2):154–159

    PubMed  Google Scholar 

  • Fong M, Braun KL, Chang M (2006) Native Hawaiian preferences for informed consent and disclosure of results from genetic research. J Cancer Educ 21(Suppl):S47–S52

    Article  PubMed  Google Scholar 

  • Hall MJ, Olopade OI (2006) Disparities in genetic testing: thinking outside the BRCA box. J Clin Oncol 24:2197–2203

    Article  PubMed  Google Scholar 

  • Halverson CM, Ross LF (2012) Engaging African-Americans about biobanks and the return of research results. J Community Genet 3(4):275–283

    Article  PubMed Central  PubMed  Google Scholar 

  • Hasnain-Wynia R, Baker DW, Nerenz D, Feinglass J, Beal AC, Landrum MB, Behal R, Weissman JS (2007) Disparities in health care are driven by where minority patients seek care: examination of the hospital quality alliance measures. Arch Intern Med 167(12):1233–1239

    Article  PubMed  Google Scholar 

  • Haynes MA, Smedley BD (ed) (1999) The burden of cancer among ethnic minorities and medically underserved populations. In: Institute of Medicine (US) Committee on Cancer Research among Minorities and the Medically Underserved. The unequal burden of cancer: an assessment of NIH research and programs for ethnic minorities and the medically underserved. Washington (DC): National Academies (US)

  • IOM (1999) Alfred M. Haynes and Brian D. Smedley, Editors. The unequal burden of cancer: an assessment of NIH research and programs for ethnic minorities and the medically underserved. Institute of Medicine, National Academy Press, Washington, DC: 1999

  • IOM (2004) Health literacy: a prescription to end confusion. The National Academies, Washington, DC

    Google Scholar 

  • IOM (2013) National Research Council. Delivering high-quality cancer care: charting a new course for a system in crisis. Washington, DC: The National Academies Press, 2013

  • Israel BA, Schulz AJ, Parker EA, Becker AB, Allen AJ, Guzman R (2003) Critical issues in developing and following community based participatory research principles. In: Minkler M, Wallerstein N (eds) Community-based participatory research for health. Jossey-Bass, San Francisco, CA, pp 47–66

    Google Scholar 

  • James RD, Yu JH, Henrikson NB, Bowen DJ, Fullerton SM (2008) Strategies and stakeholders: minority recruitment in cancer genetics research. Community Genet 11:241–249. doi:10.1159/000116878

    Article  PubMed  Google Scholar 

  • Jones J (1981) Bad blood: the Tuskegee syphilis experiment—a tragedy of race and medicine. The Free Press, New York, NY

    Google Scholar 

  • Joseph G, Dohan D (2012) Recruitment practices and the politics of inclusion in cancer clinical trials. Med Anthropol Q 26(3):338–360

    Article  PubMed  Google Scholar 

  • Lee CI, Bassett LW, Leng M et al (2012) Patients’ willingness to participate in a breast cancer biobank at screening mammogram. Breast Cancer Res Treat 136:899–906

    Article  PubMed Central  PubMed  Google Scholar 

  • Lemke AA, Halverson C, Ross LF (2012) Biobank participation and returning research results: perspectives from a deliberative engagement in South Side Chicago. Am J Med Genet A 158A(5):1029–1037

    Article  PubMed Central  PubMed  Google Scholar 

  • Luque JS, Quinn GP, Montel-Ishino FA, Arevalo M, Bynum SA, Noel-Thomas S, Wells KJ, Gwede CK, Meade CD, Tampa Bay Community Cancer Network Partners (2012) Formative research on perceptions of biobanking: what community members think. J Cancer Educ 27(1):91–99

    Article  PubMed Central  PubMed  Google Scholar 

  • Maxwell AE, Bastani R, Chen MS Jr, Nguyen TT, Stewart SL, Taylor VM (2010) Constructing a theoretically-based set of measures for liver cancer control research studies. Prev Med 50:68–73

    Article  PubMed Central  PubMed  Google Scholar 

  • Minkler M (2010) Linking science and policy through community-based participatory research to study and address health disparities. Am J Public Health 100(suppl 1):S81–S87

    Article  PubMed Central  PubMed  Google Scholar 

  • Minkler M, Wallerstein N (eds) (2003) Community-based participatory research for health. Jossey-Bass, San Francisco, CA

    Google Scholar 

  • Murthy V, Krumholz HM, Gross C (2004) Participation in cancer clinical trials race-, sex, and age-based disparities. JAMA 291(22):2720–2726

    Article  CAS  PubMed  Google Scholar 

  • National Cancer Institute. Available from http://biospecimens.cancer.gov/bestpractices/got/

  • National Institutes of Health Revitalization Act of 1993

  • O'Doherty KC, Burgess MM (2009) Engaging the public on biobanks: outcomes of the BC biobank deliberation. Publ Health Genomics 12(4):203–215

    Google Scholar 

  • O’Doherty KC et al (2011) From consent to institutions: designing adaptive governance for genomic biobanks. Soc Sci Med 73(3):367–374

    Article  PubMed  Google Scholar 

  • O’Doherty KC, Hawkins AK, Burgess MM (2012) Involving citizens in the ethics of biobank research: informing institutional policy through structured public deliberation. Soc Sci Med 75(9):1604–1611

    Article  PubMed  Google Scholar 

  • O'Doherty KC, Hawkins A (2010) Structuring public engagement for effective input in policy development on human tissue biobanking. Publ Health Genomics 13(4):197–206

    Article  Google Scholar 

  • Petryna A (2005) Ethical variability: drug development and globalizing clinical trials. Am Ethnol 32(2):183–197

    Article  Google Scholar 

  • Rebbeck TR, Halbert CH, Sankar P (2006) Genetics, epidemiology, and cancer disparities: is it black and white? J Clin Oncol 24:2164–2169

    Article  PubMed  Google Scholar 

  • Rodriguez EM, Torres ET, Erwin DO (2013) Awareness and interest in biospecimen donation for cancer research: views from gatekeepers and prospective participants in the latino community. J Community Genetics 4:461–468

    Article  Google Scholar 

  • Santos LA (2009) Genetic research in native communities. Prog Commun Health Partn 2:4

    Google Scholar 

  • Shan H, Wang JX, Ren FR, Zhang YZ, Zhao HY, Gao GJ et al (2002) Blood banking in China. Lancet 360(9347):1770–1775

    Article  PubMed  Google Scholar 

  • Shavers VL, Lynch CF, Burmeister LF (2002) Racial difference in factors that influence the willingness to participate in medical research studies. Ann Epidemiol 12(4):248–256

    Article  PubMed  Google Scholar 

  • Smith BD, Smith GL, Hurria A, Hortobagyi GN, Buchholz TA (2009) Future of cancer incidence in the United States: burdens upon an aging, changing nation. J Clin Oncol 27(17):2758–2765

    Article  PubMed  Google Scholar 

  • Spector RE (2000) Cultural diversity in health and illness, 5th edn. Prentice Hall, Upper Saddle River, NJ

    Google Scholar 

  • Streicher SA et al (2011) Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study. J Community Genet 2(3):153–163

    Article  PubMed Central  PubMed  Google Scholar 

  • Suh KS, Sarojini S, Youssif M et al (2013) Tissue banking, bioinformatics, and electronic medical records: the front-end requirements for personalized medicine. J Oncol 2013:368751. doi:10.1155/2013/368751

    Article  PubMed Central  PubMed  Google Scholar 

  • Thomas GS (2009) Buffalo named third-poorest city in U.S. Business First (Buffalo Niagara), September 2009

  • Timmermans S, McKay T (2009) Clinical trials as treatment option: bioethics and health care disparities in substance dependency. Soc Sci Med 69(12):1784–1790

    Article  PubMed  Google Scholar 

  • Tison GH, Liu C, Ren F, Nelson K, Shan H (2007) Influences of general and traditional Chinese beliefs on the decision to donate blood among employer-organized and volunteer donors in Beijing, China. Transfusion 47(10):1871–1879

    Article  PubMed  Google Scholar 

  • U.S. Census Bureau (2010) The next four decades—the older population in the United States: 2010 to 2050 population estimates and projections. Available from: http://www.census.gov/prod/2010pubs/p25-1138.pdf

  • U.S. Census Bureau. State and County Quick Facts. Available from: http://quickfacts.census.gov

  • Wallerstein N, Duran B (2010) Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Public Health 100(suppl 1):S40

    Article  PubMed Central  PubMed  Google Scholar 

  • Zaller N, Nelson KE, Ness P, Wen G, Bai X, Shan H (2005) Knowledge, attitude and practice survey regarding blood donation in a Northwestern Chinese City. Transfus Med 15(4):277–286

    Article  CAS  PubMed  Google Scholar 

Download references

Acknowledgments

Funding for this study was provided in part through cooperative agreement grants funded by the National Cancer Institute’s Center to Reduce Cancer Health Disparities to: The Asian American Network for Cancer Awareness Research and Training (AANC-ART): The National Center for Reducing Asian American Cancer Health Disparities under grant 3U01CA114640-05S4, 1U54 CA153499, U54 CA153499-01S1, 1U54 153499-02S1; Tampa Bay Community Cancer Network (TBCCN) 5 U54 CA153509-03; 3 U01 CA114627-05S2; Western New York Cancer Coalition (WNYC2) Center to Reduce Disparities, U54CA153598; and R03HD059556 (Arts, Research, T-cells & Socio-demographics (ARTS) in the Niagara Region). The Roswell Park Cancer Institute DataBank and Biorepository is a CCSG Shared Resource supported by P30CA016056-27. The content is solely the responsibility of the authors and does not reflect the official views of the NCI.

AANCART would like to thank the following organizations for their assistance in the study: Chinatown San Francisco Public Health Center, Hmong Women’s Heritage Association, Paul Hom Asian Clinic, and The Vietnamese Cancer Awareness Research and Education Society. WNYCC acknowledges the critical role of our Community Leadership Group in Niagara Falls, NY: E. Cohen, P. Posey, O. Steed, and A. Primus; and the Esperanza y Vida volunteers, Latino community partners of Buffalo, NY, and Jomary Colon. TBCCN gratefully recognizes the many community members who participated in this project. We also acknowledge the valuable insights of our TBCCN Biobanking Community Advisory Group (B-CAG) who helped to guide this work (Ms. Carmen Reyes, Ms. Gloria San Miguel, Ms. Margarita Romo, Mr. Jim West, Ms. Dale Watson, and Ms. Rebecca Phillips). The authors would also like to acknowledge the Community Network Programs Center (CNPC) Publication and Presentation Committee for their constructive feedback and review.

Human subjects

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study. This research was approved by the Institutional Review Board at each of the sites: Moffitt Cancer Center, Roswell Park Cancer Institute, and the University of California, Davis.

Author information

Authors and Affiliations

  1. UC Davis Comprehensive Cancer Center, 4800 2nd Avenue, FSSB, Suite 2200, Sacramento, CA, 95817, USA

    Julie H. T. Dang & Moon S. Chen Jr.

  2. Cancer Prevention and Population Sciences, Center for Personalized Medicine, Rosewell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY, 14263, USA

    Elisa M. Rodriguez

  3. Jiann-Ping Hsu College of Public Health, Georgia Southern University, PO Box 8015, Statesboro, GA, 30460, USA

    John S. Luque

  4. Cancer Prevention and Population Sciences, Rosewell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY, 14263, USA

    Deborah O. Erwin

  5. Division of Population Science, Health Outcomes & Behavior, Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL, 33612, USA

    Cathy D. Meade

Authors
  1. Julie H. T. Dang
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Elisa M. Rodriguez
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. John S. Luque
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Deborah O. Erwin
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Cathy D. Meade
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Moon S. Chen Jr.
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Julie H. T. Dang.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Dang, J.H.T., Rodriguez, E.M., Luque, J.S. et al. Engaging diverse populations about biospecimen donation for cancer research. J Community Genet 5, 313–327 (2014). https://doi.org/10.1007/s12687-014-0186-0

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12687-014-0186-0

Keywords

Search

Navigation