Advertisement

Factors associated with willingness to provide biospecimens for genetics research among African American cancer survivors

  • Altovise T. EwingEmail author
  • Nnenna Kalu
  • Gloria Cain
  • Lori H. Erby
  • Luisel J. Ricks-Santi
  • Eva Tetteyfio-Kidd Telemaque
  • Denise M. Scott
Original Article
  • 3 Downloads

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.

Keywords

Biospecimens Willingness to participate Cancer genetics research African American cancer survivors Cancer health disparities 

Notes

Compliance with ethical standards

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.

References

  1. Achter P, Parrott R, Silk K (2004) African Americans’ opinions about human-genetics research. Politics Life Sci 23(1):60–66PubMedGoogle Scholar
  2. 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 PubMedPubMedCentralGoogle Scholar
  3. Ashley EA (2015) The precision medicine initiative: a new national effort. JAMA 313(21):2119–2120PubMedGoogle Scholar
  4. 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 PubMedPubMedCentralGoogle Scholar
  5. 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):196–204PubMedGoogle Scholar
  6. 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 PubMedGoogle Scholar
  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
  8. 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 PubMedGoogle Scholar
  9. Collins FS, Varmus H (2015) A new initiative on precision medicine. N Engl J Med 372(9):793–795PubMedPubMedCentralGoogle Scholar
  10. 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):537–546PubMedPubMedCentralGoogle Scholar
  11. 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 PubMedGoogle Scholar
  12. 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
  13. 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 PubMedGoogle Scholar
  14. 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):15–36PubMedGoogle Scholar
  15. 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 PubMedPubMedCentralGoogle Scholar
  16. 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 PubMedPubMedCentralGoogle Scholar
  17. 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 PubMedGoogle Scholar
  18. Gamble VN (1993) A legacy of distrust: African Americans and medical research. Am J Prev Med 9(6):35–38PubMedGoogle Scholar
  19. Green PM, Kelly BA (2004) Colorectal cancer knowledge, perceptions, and behaviors in African Americans. Cancer Nurs 27(3):206–215PubMedGoogle Scholar
  20. 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):573–582PubMedGoogle Scholar
  21. 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 PubMedGoogle Scholar
  22. 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 PubMedPubMedCentralGoogle Scholar
  23. 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.0000237719.37908.54PubMedGoogle Scholar
  24. 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):150–153Google Scholar
  25. 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 PubMedPubMedCentralGoogle Scholar
  26. 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 Google Scholar
  27. 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 PubMedPubMedCentralGoogle Scholar
  28. 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):25–35PubMedGoogle Scholar
  29. 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):51–62PubMedGoogle Scholar
  30. Igbe M, Adebamowo C (2012) Qualitative study of knowledge and attitudes to biobanking among lay persons in Nigeria. BMC Med Ethics 13(1):27PubMedPubMedCentralGoogle Scholar
  31. 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
  32. 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 PubMedGoogle Scholar
  33. 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):491–494PubMedGoogle Scholar
  34. 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 Google Scholar
  35. 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 Google Scholar
  36. 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):176–183Google Scholar
  37. 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):91–99PubMedPubMedCentralGoogle Scholar
  38. 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 PubMedGoogle Scholar
  39. 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 PubMedPubMedCentralGoogle Scholar
  40. 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 PubMedPubMedCentralGoogle Scholar
  41. 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):173–182PubMedPubMedCentralGoogle Scholar
  42. McQuillan GM, Porter KS, Agelli M, Kington R (2003) Consent for genetic research in a general population: the NHANES experience. Genet Med 5:35–42Google Scholar
  43. 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):1349–1354Google Scholar
  44. Murphy EJ, Wickramaratne P, Weissman MM (2009) Racial and ethnic differences in willingness to participate in psychiatric genetic research. Psychiatr Genet 19(4):186–194PubMedPubMedCentralGoogle Scholar
  45. 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 PubMedGoogle Scholar
  46. 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):577–622PubMedPubMedCentralGoogle Scholar
  47. National Cancer Institute (2012) PDQ® genetics of prostate cancer. Retrieved from http://cancer.gov/cancertopics/pdq/genetics/prostate/HealthProfessional. Accessed 23 Oct 2018
  48. 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 PubMedGoogle Scholar
  49. 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 PubMedPubMedCentralGoogle Scholar
  50. 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 Google Scholar
  51. 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 PubMedGoogle Scholar
  52. 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 PubMedPubMedCentralGoogle Scholar
  53. 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 PubMedGoogle Scholar
  54. Skloot R, Turpin B (2010) The immortal life of Henrietta Lacks. Crown Publishers, New YorkGoogle Scholar
  55. 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
  56. 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
  57. 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
  58. Zoon KC (2004) Future directions in cancer research: impact of the completion of the human genome. Toxic Pathol 32(Suppl 1):1–2Google Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  1. 1.23andMe Inc.Mountain ViewUSA
  2. 2.College of Medicine Alcohol Research CenterHoward UniversityWashingtonUSA
  3. 3.Genetic Counseling Training ProgramJohns Hopkins University/National Human Genome Research Institute (JHU/NHGRI)BethesdaUSA
  4. 4.Department of Cancer Research CenterHampton University Cancer CenterHamptonUSA
  5. 5.Transformative Solutions, Inc.WashingtonUSA

Personalised recommendations