Skip to main content
SpringerLink
Log in

“Lord Knows What’s Being Done with My Blood!”: Black Women’s Perceptions of Biospecimen Donation for Clinical Research in the United States

  • Published:
Journal of Racial and Ethnic Health Disparities Aims and scope Submit manuscript

Abstract

Purpose

Black women are underrepresented in clinical research and clinical trials. Knowledge gaps lead to biased clinical practice and care. There is a small but growing body of literature on Black women’s perceptions about participation when biospecimen donation is sought by researchers. This is the first known study to investigate willingness to participate in clinical research involving biospecimen donation among Black women of reproductive age in the United States.

Methods

This cross-sectional study recruited 496 Black women (ages 18–49) from a research crowdsourcing platform. Participants completed a 46-item online survey which asked about their willingness to provide blood samples for clinical health research and reasons for their willingness or for any unwillingness. Descriptive statistics and thematic analysis method were used to analyze the data.

Results

Less than half (44%) of participants reported willingness to provide blood samples for clinical research. The most common concerns of those expressing unwillingness to provide samples were “fear of blood sample being misused” and “distrust with the health researchers handling the samples.” We identified six qualitative themes from the analysis of participants’ open-ended responses. The most important factors include a desire for integrity and transparency in research, institutional racism contributing to mistrust, and adequate compensation and clearly defined benefits to participation.

Conclusions

The recruitment and engagement of Black women in clinical biospecimen research should involve transparent, trustworthy, and anti-racist practices and informed respect for Black women’s autonomy. There is a need to address Black women’s concerns about exploitative profits and mistrust of academic and medical institutions.

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

Fig. 1
Fig. 2

Similar content being viewed by others

Data Availability

The data presented in this study are available on reasonable request from the corresponding author.

References

  1. Powell-Wiley TM, Baumer Y, Baah FO, Baez AS, Farmer N, Mahlobo CT, et al. Social determinants of cardiovascular disease. Circul Res. 2022;130:782–99.

    Article  CAS  Google Scholar 

  2. Forrester S, Jacobs D, Zmora R, Schreiner P, Roger V, Kiefe CI. Racial differences in weathering and its associations with psychosocial stress: the CARDIA study. SSM - Popul Health. 2019;7:100319.

    Article  Google Scholar 

  3. Geronimus AT, Hicken M, Keene D, Bound J. Weathering and age patterns of allostatic load scores among Blacks and Whites in the United States. Am J Public Health. 2006;96:826–33.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Akins JD, Martin ZT, Patik JC, Curtis BM, Campbell JC, Olvera G, et al. Young, non-hispanic black men and women exhibit divergent peripheral and cerebral vascular reactivity. Exp Physiol. 2022;107:450–61.

    Article  PubMed  Google Scholar 

  5. Allen AM, Wang Y, Chae DH, Price MM, Powell W, Steed TC, et al.  Racial discrimination, the superwoman schema, and allostatic load: exploring an integrative stress-coping model among African American women.  Ann N Y Acad  Sci. 2019;1457:104–27.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Martin ZT, Al-daas IO, Cardenas N, Vu J, Brown KK, Brothers R. Conduit artery and forearm microvascular reactivity in Black and White females: examining the role of Greater Superwoman Schema endorsement. FASEB J. https://faseb.onlinelibrary.wiley.com/doi/abs/10.1096/fasebj.2022.36.S1.R4850.

  7. National Cancer Institute, Division of Cancer Treatment and Diagnosis. Frequently asked questions (FAQs) [Internet]. [cited 2023 Oct 8]. https://biospecimens.cancer.gov/patientcorner/faq.asp#q2.

  8. Bowen DJ, Penchaszadeh VB. Special issue: enhancing minority recruitment into genetics research. Community Genet. 2008;11:189–190.

    Article  PubMed  Google Scholar 

  9. Branson RD, Davis K, Butler KL. African Americans’ participation in clinical research: importance, barriers, and solutions. Am J Surg. 2007;193:32–9. discussion 40.

    Article  PubMed  Google Scholar 

  10. Compadre AJ, Simonson ME, Gray K, Runnells G, Kadlubar S, Zorn KK. Challenges in recruiting African-American women for a breast cancer genetics study. Hered Cancer Clin Pract. 2018;16:8.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Gorelick PB, Harris Y, Burnett B, Bonecutter FJ. 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. 1998;90:141–5.

    CAS  PubMed  PubMed Central  Google Scholar 

  12. Hughes C, Peterson SK, Ramirez A, Gallion KJ, McDonald PG, Skinner CS, et al. Minority recruitment in hereditary breast cancer research. Cancer Epidemiol Biomarkers Prev. 2004;13:1146–55.

    Article  PubMed  Google Scholar 

  13. Spruill IJ. Enhancing recruitment of African-American families into genetic research: lessons learned from Project SuGar. J Community Genet. 2010;1:125–32.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Wujcik D, Wolff SN. Recruitment of African Americans to National Oncology Clinical Trials through a clinical trial shared resource. J Health Care Poor Underserved. 2010;21:38–50.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Ambrosone CB, Zirpoli G, Ruszczyk M, Shankar J, Hong C-C, McIlwain D, et al. Parity and breastfeeding among African-American women: differential effects on breast cancer risk by estrogen receptor status in the women’s Circle of Health Study. Cancer Causes Control. 2014;25:259–65.

    Article  PubMed  Google Scholar 

  16. Bekash A, Saini J, Fan X, Hooke J, Mural R, Shriver C, et al. Differential benign breast disease co-occurrence with cancer in Caucasian and African American women. Cancer Res. 2009;69:3066.

    Article  Google Scholar 

  17. Conti DV, Darst BF, Moss LC, Saunders EJ, Sheng X, Chou A, et al. Trans-ancestry genome-wide association meta-analysis of prostate cancer identifies new susceptibility loci and informs genetic risk prediction. Nat Genet. 2021;53:65–75.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  18. Manrai AK, Funke BH, Rehm HL, Olesen MS, Maron BA, Szolovits P, et al. Genetic misdiagnoses and the potential for health disparities. N Engl J Med. 2016;375:655–65.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Rebbeck TR, Bridges JFP, Mack JW, Gray SW, Trent JM, George S, et al. A framework for promoting diversity, equity, and inclusion in genetics and genomics research. JAMA Health Forum. 2022;3:e220603.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Adams-Campbell LL, Dash C, Palmer JR, Wiedemeier MV, Russell CW, Rosenberg L, et al. Predictors of biospecimen donation in the Black women’s Health Study. Cancer Causes Control. 2016;27:797–803.

    Article  PubMed  PubMed Central  Google Scholar 

  21. Barber LE, Palmer JR, Bertrand KA, Wang C. Abstract C040: predictors of blood biospecimen provision among African American women. Cancer Epidemiol Biomarkers Prev. 2020;29:C040–040.

    Article  Google Scholar 

  22. Radecki Breitkopf C, Williams KP, Ridgeway JL, Parker MW, Strong-Simmons A, Hayes SN, et al. Linking education to action: a program to increase research participation among African American Women. J Women’s Health. 2018;27:1242–1249.

    Article  Google Scholar 

  23. Ridley-Merriweather KE, Head KJ. African American women’s perspectives on donating healthy breast tissue for research: implications for recruitment. Health Commun. 2017;32:1571–1580.

    Article  PubMed  Google Scholar 

  24. Smith YR, Johnson AM, Newman LA, Greene A, Johnson TRB, Rogers JL. Perceptions of clinical research participation among African American women. J Womens Health (Larchmt). 2007;16:423–8.

    Article  PubMed  Google Scholar 

  25. Sheppard VB, Hurtado-de-Mendoza A, Zheng Y-L, Wang Y, Graves KD, Lobo T, et al. Biospecimen donation among Black and White breast cancer survivors: opportunities to promote precision medicine. J Cancer Surviv. 2018;12:74–81.

    Article  PubMed  Google Scholar 

  26. Yen GP, Davey A, Ma GX. Factors that affect willingness to donate blood for the purpose of biospecimen research in the Korean American community. Biopreserv Biobank. 2015;13:107–13.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Scherr CL, Ramesh S, Marshall-Fricker C, Perera MA. A review of African Americans’ beliefs and attitudes about genomic studies: opportunities for message design. Front Genet. 2019 [cited 2021 May 30];10. https://www.frontiersin.org/articles/https://doi.org/10.3389/fgene.2019.00548/full.

  28. Liao Y, Brown KK. Usage of digital health tools and perception of mHealth intervention for physical activity and sleep in Black women. Int J Environ Res Public Health. 2022;19:1557.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Centers for Disease Control and Prevention. About chronic health diseases [Internet]. [Cited 9 September 2023]. National Center for Chronic Disease Prevention and Health Promotion. 2022. https://www.cdc.gov/chronicdisease/about/index.htm.

  30. Braun V, Clarke V. Thematic analysis. In: Cooper H, Camic PM, Long DL, Panter AT, Rindskopf D, Sher KJ, editors. APA handbook of research methods in psychology, vol 2: research designs: quantitative, qualitative, neuropsychological, and biological. Washington, DC, US: American Psychological Association; 2012. p. 57–71.

    Chapter  Google Scholar 

  31. Royal C, Baffoe-Bonnie A, Kittles R, Powell I, Bennett J, Hoke G, et al. Recruitment experience in the first phase of the African American Hereditary Prostate Cancer (AAHPC) study. Ann Epidemiol. 2000;10:S68–77.

    Article  CAS  PubMed  Google Scholar 

  32. Shavers VL, Lynch CF, Burmeister LF. Racial differences in factors that influence the willingness to participate in medical research studies. Ann Epidemiol. 2002;12:248–56.

    Article  PubMed  Google Scholar 

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

    Article  CAS  PubMed  Google Scholar 

  34. Tong EK, Fung L-C, Stewart SL, Paterniti DA, Dang JHT, Chen MS Jr. Impact of a biospecimen collection seminar on willingness to donate biospecimens among Chinese Americans: results from a randomized, controlled community-based trial. Cancer Epidemiol Biomarkers Prev. 2014;23:392–401.

    Article  Google Scholar 

  35. Raines-Milenkov A, Felini M, Baker E, Acharya R, Diese EL, Onsa S et al. Willingness of a multiethnic immigrant population to donate biospecimens for research purposes. J Immigrant Minority Health [Internet]. 2021 [cited 2022 Jan 23]; https://doi.org/10.1007/s10903-021-01241-4.

  36. Scott EA, Schlumpf KS, Mathew SM, Mast AE, Busch MP, Gottschall JL, et al. Biospecimen repositories: are blood donors willing to participate? Transfusion. 2010;50:1943–1950.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Dash C, Wallington SF, Muthra S, Dodson E, Mandelblatt J, Adams-Campbell LL. Disparities in knowledge and willingness to donate research biospecimens: a mixed-methods study in an underserved urban community. J Community Genet. 2014;5:329–336.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Hagiwara N, Berry-Bobovski L, Francis C, Ramsey L, Chapman RA, Albrecht TL. Unexpected findings in the exploration of African American underrepresentation in biospecimen collection and biobanks. J Canc Educ. 2014;29:580–7.

    Article  Google Scholar 

  39. Hinton EC. Black American millennials coping with the myth of a post-racist society. Dissertation [Internet]. Minnesota, United States: Walden University; 2020 [cited 2024 Apr 3]. https://www.proquest.com/docview/2386924967/abstract/F3D47F93F35B442CPQ/1.

  40. Jones-Eversley S, Adedoyin AC, Robinson MA, Moore SE. Protesting Black inequality: a commentary on the Civil Rights Movement and Black Lives Matter. J Community Pract. 2017;25:309–24.

    Article  Google Scholar 

  41. Luckerson V. Why millenials can’t afford to be colorblind. Time [Internet]. 2015 Jul 6 [cited 2024 Apr 3]; https://time.com/3944697/millennials-race-confederate-flag/.

  42. Merdad L, Aldakhil L, Gadi R, Assidi M, Saddick SY, Abuzenadah A, et al. Assessment of knowledge about biobanking among healthcare students and their willingness to donate biospecimens. BMC Med Ethics. 2017;18:32.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Henderson C, Scott T, Schinder B, Hager E, Friedman FS, Miller E, et al. Shifting the paradigm from participant mistrust to researcher and institutional trustworthiness: a qualitative study of researchers’ perspectives on building trustworthiness with Black communities. Community Health Equity Res Policy. 2022. https://doi.org/10.1177/0272684X221117710.

  44. Thomas SP. Trust also means centering Black women’s reproductive health narratives. Hastings Cent Rep. 2022;52:S18–21.

    Article  PubMed  Google Scholar 

  45. Wilson Y. Is trust enough? Anti-Black racism and the perception of Black vaccine “hesitancy.” Hastings Cent Rep. 2022;52(Suppl 1):S12–7.

    PubMed  Google Scholar 

  46. Dang JHT, Rodriguez EM, Luque JS, Erwin DO, Meade CD, Chen MS. Engaging diverse populations about biospecimen donation for cancer research. J Community Genet. 2014;5:313–327.

    Article  PubMed  PubMed Central  Google Scholar 

  47. Griffith DM, Jaeger EC, Bergner EM, Stallings S, Wilkins CH. Determinants of trustworthiness to conduct medical research: findings from focus groups conducted with racially and ethnically diverse adults. J Gen Intern Med. 2020;35:2969–75.

    Article  PubMed  PubMed Central  Google Scholar 

  48. Association of American Medical Colleges. The principles of trustworthiness [Internet]. Center For Health Justice. 2022 [cited 2022 Jun 22]. https://www.aamchealthjustice.org/resources/trustworthiness-toolkit.

  49. Thomas SP, Amini K, Floyd KJ, Willard R, Wossenseged F, Keller M, et al. Cultivating diversity as an ethos with an anti-racism approach in the scientific enterprise. HGG Adv. 2021;2:100052.

    PubMed  PubMed Central  Google Scholar 

  50. Ford CL, Airhihenbuwa CO. The public health critical race methodology: praxis for antiracism research. Soc Sci Med. 2010;71:1390–8.

    Article  PubMed  Google Scholar 

  51. Goings TC, Belgrave FZ, Mosavel M, Evans CBR. An antiracist research framework: principles, challenges, and recommendations for dismantling racism through research. J Soc Social Work Res. 2023;14:101–28.

    Article  Google Scholar 

  52. Ross LJ. Reproductive justice as intersectional feminist activism. Souls. 2017;19:286–314.

    Article  Google Scholar 

  53. ten Have H. Patrão Neves M do C. Respect for autonomy. In: ten Have H, Patrão Neves M do C, editors. Dictionary of global bioethics [Internet]. Cham: Springer International Publishing; 2021 [cited 2023 Aug 2]. pp. 913–913. https://doi.org/10.1007/978-3-030-54161-3_450.

  54. Davis D-A. Obstetric racism: the racial politics of pregnancy, Labor, and Birthing. Med Anthropol. 2019;38:560–73.

    Article  PubMed  Google Scholar 

  55. Roberts D. Killing the Black body: race, reproduction, and the meaning of liberty. Knopf Doubleday Publishing Group; 2014.

    Google Scholar 

  56. Wilson WD, Jackson FH, Harrell JR. Framework for ethical community engagement (ECE) with underserved populations in the rural south: a help for bioethics and healthcare promotion. J Health Care Poor Underserved. 2019;30:91–104.

    Article  PubMed  Google Scholar 

  57. Erwin DO, Moysich K, Kiviniemi MT, Saad-Harfouche FG, Davis W, Clark-Hargrave N, et al. Community-based partnership to identify keys to biospecimen research participation. J Canc Educ. 2013;28:43–51.

    Article  Google Scholar 

  58. Veseli B, Sandner S, Studte S, Clement M. The impact of COVID-19 on blood donations. PLoS ONE. 2022;17:e0265171.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  59. Behar-Horenstein L, Warren R, Setiawan VW, Perkins C, Schmittgen TD. Enhancing African American participation in biospecimens: a case in point for pancreatic cancer. CHD [Internet]. 2020 [cited 2021 May 30]; Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8294622/.

  60. Beskow LM. Lessons from HeLa cells: the ethics and policy of biospecimens. Annu Rev Genom Hum Genet. 2016;17:395–417.

    Article  CAS  Google Scholar 

  61. Beskow LM, Friedman JY, Hardy NC, Lin L, Weinfurt KP. Developing a simplified consent form for biobanking. PLoS ONE. 2010;5:e13302.

    Article  PubMed  PubMed Central  Google Scholar 

  62. Clark US, Hurd YL. Addressing racism and disparities in the biomedical sciences. Nat Hum Behav. 2020;4:774–7.

    Article  PubMed  Google Scholar 

  63. Flory J, Emanuel E. Interventions to improve research participants’ understanding in informed consent for research: a systematic review. JAMA. 2004;292:1593–601.

    Article  CAS  PubMed  Google Scholar 

  64. Kim EJ, Kim SH. Simplification improves understanding of informed consent information in clinical trials regardless of health literacy level. Clin Trails. 2015;12:232–6.

    Article  Google Scholar 

  65. Page SA, Manhas KP, Muruve DA. A survey of patient perspectives on the research use of health information and biospecimens. BMC Med Ethics. 2016;17:48.

    Article  PubMed  PubMed Central  Google Scholar 

  66. Spector-Bagdady K. Hospitals should act now to notify patients about research use of their data and biospecimens. Nat Med. 2020;26:306–308.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  67. Rodriguez EM, Saad-Harfouche FG, Miller A, Mahoney MC, Ambrosone CB, Morrison CD, et al. Engaging diverse populations in biospecimen donation: results from the Hoy Y Mañana study. J Community Genet. 2016;7:271–277.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Funding

This research study was supported by startup funds awarded to Dr. Yue Liao from the University of Texas at Arlington.

Author information

Authors and Affiliations

  1. Department of Kinesiology, University of Texas at Arlington, 500 W. Nedderman Drive, Arlington, TX, 76019, USA

    Kyrah K. Brown, R. Mathew Brothers & Yue Liao

  2. School of Public Health, Harvard University, Boston, MA, USA

    Shameka Poetry Thomas

Authors
  1. Kyrah K. Brown
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Shameka Poetry Thomas
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. R. Mathew Brothers
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Yue Liao
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

Conceptualization, K.K.B and Y.L.; methodology, Y.L. and K.K.B.; formal analysis, K.K.B and Y.L.; writing—original draft preparation, K.K.B.; writing—review and editing, Y.L., S.P.T., R.M.B; funding acquisition, Y.L. All authors have read and agreed to the published version of the manuscript.

Corresponding author

Correspondence to Kyrah K. Brown.

Ethics declarations

Competing Interests

The authors declare no competing interests.

Ethics Approval

This study was conducted according to the guidelines of the Declaration of Helsinki and approved by the Institutional Review Board of the University of Texas at Arlington (protocol number 2021−0207) on 1 February 2021.

Consent to Participate

Informed consent was obtained from all subjects involved in the study.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Brown, K.K., Thomas, S.P., Brothers, R.M. et al. “Lord Knows What’s Being Done with My Blood!”: Black Women’s Perceptions of Biospecimen Donation for Clinical Research in the United States. J. Racial and Ethnic Health Disparities (2024). https://doi.org/10.1007/s40615-024-02015-y

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1007/s40615-024-02015-y

Keywords

Search

Navigation