Abstract
This study evaluated factors associated with willingness to provide biospecimens for cancer genetic research among African American cancer survivors. A total of 200 African American adults diagnosed with breast, colon, and/or prostate cancers completed a self-administered survey. Family history information, beliefs about cancer research, cancer genetics and disparities knowledge, willingness to provide a biospecimen, and demographics were obtained. Chi-square, independent samples t tests, and logistic regression analyses were performed. Overall, 79% of this sample was willing to provide a biospecimen for cancer genetics research. Independent associations of willingness to provide a biospecimen existed among demographics (males (p = 0.041)), those who believed in the importance of genetic causes of cancer (p < 0.001), individuals who believe it is important to participate in genetics research (p < 0.001), and those who indicated they would participate in genetics research to help future generations (p = 0.026). Overall, 12.5–56% of participants demonstrated some level of genetics and cancer disparities. This study identified factors that may be incorporated into future research interventions to engage the African American cancer population in cancer genetics biobanking research.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Achter P, Parrott R, Silk K (2004) African Americans’ opinions about human-genetics research. Politics Life Sci 23(1):60–66
Adams-Campbell LL, Dash C, Palmer JR, Wiedemeier MV, Russell CW, Rosenberg L, Cozier YC (2016) Predictors of biospecimen donation in the black women’s health study. Cancer Causes Control 27(6):797–803. https://doi.org/10.1007/s10552-016-0747-0
Ashley EA (2015) The precision medicine initiative: a new national effort. JAMA 313(21):2119–2120
Braun KL, Tsark JU, Powers A, Croom K, Kim R, Gachupin FC, Morris P (2014) Cancer patient perceptions about biobanking and preferred timing of consent. Biopreserv Biobank 12(2):106–112. https://doi.org/10.1089/bio.2013.0083
Buseh AG, Underwood SM, Stevens PE, Townsend L, Kelber ST (2013) Black African immigrant community leaders’ views on participation in genomics research and DNA biobanking. Nurs Outlook 61(4):196–204
Bussey-Jones J, Henderson G, Garrett J, Moloney M, Blumenthal C, Corbie-Smith G (2009) Asking the right questions: views on genetic variation research among black and white research participants. J Gen Intern Med 24(3):299–304. https://doi.org/10.1007/s11606-008-0883-7
Cancer Disparities - National Cancer Institute at the National Institutes of Health (2018) Retrieved from http://www.cancer.gov/cancertopics/factsheet/disparities/cancer-health-disparities. Accessed 23 Oct 2018
Caswell-Jin JL, Gupta T, Hall E, Petrovchich IM, Mills MA, Kingham KE, Koff R, Chun NM, Levonian P, Lebensohn AP, Ford JM, Kurian AW (2018) Racial/ethnic differences in multiple-gene sequencing results for hereditary cancer risk. Genet Med 20(2):234–239. https://doi.org/10.1038/gim.2017.96
Collins FS, Varmus H (2015) A new initiative on precision medicine. N Engl J Med 372(9):793–795
Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S (1999) Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med 14(9):537–546
Cragun D, Scherr C, Camperlengo L, Vadaparampil ST, Pal T (2016) Evolution of hereditary breast cancer genetic services: are changes reflected in the knowledge and clinical practices of Florida providers? Genet Test Mol Biomarkers 20(10):569–578. https://doi.org/10.1089/gtmb.2016.0113
Dang JH, Rodriguez EM, Luque JS, Erwin DO, Meade CD, Chen MS, Jr (2014) Engaging diverse populations about biospecimen donation for cancer research. J Commun Genet 5(4):313–327. https://doi.org/10.1007/s12687-014-0186-0
Davis RL, Khoury MJ (2007) The emergence of biobanks: practical design considerations for large population-based studies of gene-environment interactions. Community Genet 10(3):181–185. https://doi.org/10.1159/000101760
Donovan KA, Tucker DC (2000) Knowledge about genetic risk for breast cancer and perceptions of genetic testing in a sociodemographically diverse sample. J Behav Med 23(1):15–36
Drake BF, Boyd D, Carter K, Gehlert S, Thompson VS (2017) Barriers and strategies to participation in tissue research among African-American men. J Cancer Educ 32(1):51–58. https://doi.org/10.1007/s13187-015-0905-1
Ewing A, Thompson N, Ricks-Santi L (2015) Strategies for enrollment of African Americans into cancer genetic studies. J Cancer Educ 30(1):108–115. https://doi.org/10.1007/s13187-014-0669-z
Ford BM, Evans JS, Stoffel EM, Balmaña J, Regan MM, Syngal S (2006) Factors associated with enrollment in cancer genetics research. Cancer Epidemiol Biomarkers Prev 15(7):1355–1359. https://doi.org/10.1158/1055-9965.EPI-05-0816
Gamble VN (1993) A legacy of distrust: African Americans and medical research. Am J Prev Med 9(6):35–38
Green PM, Kelly BA (2004) Colorectal cancer knowledge, perceptions, and behaviors in African Americans. Cancer Nurs 27(3):206–215
Hadley DW, Jenkins J, Dimond E, Nakahara K, Grogan L, Liewehr DJ, Steinberg SM, Kirsch I (2003) Genetic counseling and testing in families with hereditary nonpolyposis colorectal cancer. Arch Intern Med 163(5):573–582
Haga SB (2010) Impact of limited population diversity of genome-wide association studies. Genet Med 12(2):81–84. https://doi.org/10.1097/GIM.0b013e3181ca2bbf
Hagiwara N, Berry-Bobovski L, Francis C, Ramsey L, Chapman RA, Albrecht TL (2014) Unexpected findings in the exploration of African American underrepresentation in biospecimen collection and biobanks. J Cancer Educ 29(3):580–587. https://doi.org/10.1007/s13187-013-0586-6
Halbert CH, Kessler L, Stopfer JE, Domchek S, Wileyto EP (2006a) Low rates of acceptance of BRCA1 and BRCA2 test results among African American women at increased risk for hereditary breast-ovarian cancer. Genet Med 8(9):576–582 doi:10.109701.gim.0000237719.37908.54
Halbert CH, Gandy OH, Collier A, Shaker L (2006b) Intentions to participate in genetics research among African American smokers. Cancer Epidemiol Biomark Prev 15(1):150–153
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):2553–2561. https://doi.org/10.1002/cncr.24249
Hall MJ, Egleston B, Miller SM, Buzaglo JS, Millard J, Ridgway C, Damjanov N, Sprandio JD, Meropol NJ (2010) Barriers to participation in cancer prevention clinical trials. Acta Oncol (Stockh) 49(6):757–766. https://doi.org/10.3109/0284186X.2010.485209
Halverson CM, Ross LF (2012) Incidental findings of therapeutic misconception in biobank-based research. Genet Med 14:611–615. https://doi.org/10.1038/gim.2011.50
Hughes C, Lerman C, Lustbader E (1996) Ethnic differences in risk perception among women at increased risk for breast cancer. Breast Cancer Res Treat 40(1):25–35
Hughes C, Gomez-Caminero A, Benkendorf J, Kerner J, Isaacs C, Barter J, Lerman C (1997) Ethnic differences in knowledge and attitudes about BRCA1 testing in women at increased risk. Patient Educ Couns 32(1):51–62
Igbe M, Adebamowo C (2012) Qualitative study of knowledge and attitudes to biobanking among lay persons in Nigeria. BMC Med Ethics 13(1):27
Johnson T, Fendrich M (2002) A validation of the Crowne-Marlowe social desirability scale. Unpublished manuscript. Retrieved from http://www.srl.uic.edu/publist/Conference/crownemarlowe.pdf. Accessed 23 Oct 2018
Kinkorová J (2015) Biobanks in the era of personalized medicine: objectives, challenges, and innovation: overview. EPMA J 7:4. https://doi.org/10.1186/s13167-016-0053-7
Kohonen-Corish M, Macrae F, Genuardi M, Aretz S, Bapat B, Bernstein IT et al (2011) Deciphering the colon cancer genes—report of the InSiGHT-Human Variome Project Workshop, UNESCO, Paris 2010. Hum Mutat 32(4):491–494
Krumpal I (2013) Determinants of social desirability bias in sensitive surveys: a literature review. Qual Quant 47(4):2025–2047. https://doi.org/10.1007/s11135-011-9640-9
Landry LG, Ali N, Williams DR, Rehm HL, Bonham VL (2018) Lack of diversity in genomic databases is a barrier to translating precision medicine research into practice. Health Aff (Project Hope) 37(5):780–785. https://doi.org/10.1377/hlthaff.2017.1595
Liu S, Seidel-Dugan C (2006) In search of p53 target genes for the therapeutic manipulation of cancer. Curr Opin Drug Discov Dev 9(2):176–183
Luque JS, Quinn GP, Montel-Ishino F, Arevalo M, Bynum SA, Noel-Thomas S et al (2012) Formative research on perceptions of biobanking: what community members think. J Cancer Educ 27(1):91–99
Manswell Butty JA, Richardson F, Mouton CP, Royal CD, Green RD, Munroe KA (2012) Evaluation findings from genetics and family health history community-based workshops for African Americans. J Community Genet 3(1):1–12. https://doi.org/10.1007/s12687-011-0068-7
McDonald JA, Barg FK, Weathers B, Guerra CE, Troxel AB, Domchek S, Bowen D, Shea JA, Halbert CH (2012a) Understanding participation by African Americans in cancer genetics research. J Natl Med Assoc 104(7–8):324–330. https://doi.org/10.1016/S0027-9684(15)30172-3
McDonald JA, Weathers B, Barg FK, Troxel AB, Shea JA, Bowen D, Guerra CE, Halbert CH (2012b) Donation intentions for cancer genetics research among African Americans. Genet Test Mol Biomarkers 16(4):252–258. https://doi.org/10.1089/gtmb.2011.0119
McDonald JA, Vadaparampil S, Bowen D, Magwood G, Obeid JS, Jefferson M, Drake R, Gebregziabher M, Hughes Halbert C (2014) Intentions to donate to a biobank in a national sample of African Americans. Public Health Genomics 17(3):173–182
McQuillan GM, Porter KS, Agelli M, Kington R (2003) Consent for genetic research in a general population: the NHANES experience. Genet Med 5:35–42
Moorman PG, Skinner CS, Evans JP, Newman B, Sorenson JR, Calingaert B, … Schildkraut JM (2004) Racial differences in enrolment in a cancer genetics registry. Cancer Epidemiol Biomark Prev 13(8):1349–1354
Murphy EJ, Wickramaratne P, Weissman MM (2009) Racial and ethnic differences in willingness to participate in psychiatric genetic research. Psychiatr Genet 19(4):186–194
Murthy VH, Krumholz HM, Gross CP (2004) Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA 291(22):2720–2726. https://doi.org/10.1001/jama.291.22.2720
Naidoo N, Pawitan Y, Soong R, Cooper DN, Ku CS (2011) Human genetics and genomics a decade after the release of the draft sequence of the human genome. Hum Genomics 5(6):577–622
National Cancer Institute (2012) PDQ® genetics of prostate cancer. Retrieved from http://cancer.gov/cancertopics/pdq/genetics/prostate/HealthProfessional. Accessed 23 Oct 2018
Nobile H, Vermeulen E, Thys K, Bergmann MM, Borry P (2013) Why do participants enroll in population biobank studies? A systematic literature review. Expert Rev Mol Diagn 13(1):35–47. https://doi.org/10.1586/erm.12.116
Okoro ON, Odedina FT, Reams RR, Smith WT (2012) Clinical cultural competency and knowledge of health disparities among pharmacy students. Am J Pharm Educ 76(3):40. https://doi.org/10.5688/ajpe76340
Owens OL, Jackson DD, Thomas TL, Friedman DB, Hebert JR (2013) African-American men’s and women’s perceptions of clinical trials research: focusing on prostate cancer among a high risk population in the South. J Health Care Poor Underserved 2(4):1784–1800. https://doi.org/10.1353/hpu.2013.0187
Palmer JR, Ambrosone CB, Olshan AF (2014) A collaborative study of the etiology of breast cancer subtypes in African American women: the AMBER consortium. Cancer Causes Control 25(3):309–319. https://doi.org/10.1007/s10552-013-0332-8
Patil S, Majumdar B, Awan KH, Sarode GS, Sarode SC, Gadbail AR, Gondivkar S (2018) Cancer oriented biobanks: a comprehensive review. Oncol Rev 12(1):357. https://doi.org/10.4081/oncol.2018.357
Singer E, Antonucci T, Hoewyk JV (2004) Racial and ethnic variations in knowledge and attitudes about genetic testing. Genet Test 8(1):31–43. https://doi.org/10.1089/109065704323016012
Skloot R, Turpin B (2010) The immortal life of Henrietta Lacks. Crown Publishers, New York
Streicher SA, Sanderson SC, Jabs EW, Diefenbach M, Smirnoff M, Peter I, … Richardson LD (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. https://doi.org/10.1007/s12687-011-0052-2
Thurman N, Ragin C, Heron DE, Alford RJ, Andraos-Selim C, Bondzi C, … Taioli E (2009) Comparison of knowledge and attitudes toward cancer among African Americans. Infect Agents Cancer 4(Suppl 1):S15. https://doi.org/10.1186/1750-9378-4-S1-S15
U.S. Department of Health & Human Services, National Institutes of Health (2018) Precision medicine initiative, all of us research program. Retrieved from https://allofus.nih.gov/. Accessed 23 Oct 2018
Zoon KC (2004) Future directions in cancer research: impact of the completion of the human genome. Toxic Pathol 32(Suppl 1):1–2
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors declare that they have no conflict of interest.
Ethical approval
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent
Informed consent was not required for this study as identifying information was not obtained. An informational preamble was provided and read by all individual participants included in the study. The Howard University Institutional Review Board approved of this study.
Additional information
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Ewing, A.T., Kalu, N., Cain, G. et al. Factors associated with willingness to provide biospecimens for genetics research among African American cancer survivors. J Community Genet 10, 471–480 (2019). https://doi.org/10.1007/s12687-019-00411-0
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12687-019-00411-0