Journal of Community Genetics

, Volume 4, Issue 4, pp 469–482

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

  • Saskia C. Sanderson
  • Michael A. Diefenbach
  • Randi Zinberg
  • Carol R. Horowitz
  • Margaret Smirnoff
  • Micol Zweig
  • Samantha Streicher
  • Ethylin Wang Jabs
  • Lynne D. Richardson
Original Article

DOI: 10.1007/s12687-013-0154-0

Cite this article as:
Sanderson, S.C., Diefenbach, M.A., Zinberg, R. et al. J Community Genet (2013) 4: 469. doi:10.1007/s12687-013-0154-0
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Abstract

Patients from traditionally underrepresented communities need to be involved in discussions around genomics research including attitudes towards participation and receiving personal results. Structured interviews, including open-ended and closed-ended questions, were conducted with 205 patients in an inner-city hospital outpatient clinic: 48 % of participants self-identified as Black or African American, 29 % Hispanic, 10 % White; 49 % had an annual household income of <$20,000. When the potential for personal results to be returned was not mentioned, 82 % of participants were willing to participate in genomics research. Reasons for willingness fell into four themes: altruism; benefit to family members; personal health benefit; personal curiosity and improving understanding. Reasons for being unwilling fell into five themes: negative perception of research; not personally relevant; negative feelings about procedures (e.g., blood draws); practical barriers; and fear of results. Participants were more likely to report that they would participate in genomics research if personal results were offered than if they were not offered (89 vs. 62 % respectively, p < 0.001). Participants were more interested in receiving personal genomic risk results for cancer, heart disease and type 2 diabetes than obesity (89, 89, 91, 80 % respectively, all p < 0.001). The only characteristic consistently associated with interest in receiving personal results was disease-specific worry. There was considerable willingness to participate in and desire for personal results from genomics research in this sample of predominantly low-income, Hispanic and African American patients. When returning results is not practical, or even when it is, alternatively or additionally providing generic information about genomics and health may also be a valuable commodity to underrepresented minority and other populations considering participating in genomics research.

Keywords

Genomics researchInterestInterviewsPatientsPersonal results

Supplementary material

12687_2013_154_MOESM1_ESM.docx (66 kb)
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Copyright information

© Springer-Verlag Berlin Heidelberg 2013

Authors and Affiliations

  • Saskia C. Sanderson
    • 1
    • 6
  • Michael A. Diefenbach
    • 2
    • 6
  • Randi Zinberg
    • 1
    • 6
  • Carol R. Horowitz
    • 3
    • 6
  • Margaret Smirnoff
    • 4
    • 6
  • Micol Zweig
    • 1
    • 6
  • Samantha Streicher
    • 1
    • 6
    • 7
  • Ethylin Wang Jabs
    • 1
    • 6
  • Lynne D. Richardson
    • 3
    • 5
    • 6
  1. 1.Department of Genetics and Genomic SciencesIcahn School of Medicine at Mount SinaiNew YorkUSA
  2. 2.Department of UrologyIcahn School of Medicine at Mount SinaiNew YorkUSA
  3. 3.Department of Health Evidence and PolicyIcahn School of Medicine at Mount SinaiNew YorkUSA
  4. 4.Department of NursingIcahn School of Medicine at Mount SinaiNew YorkUSA
  5. 5.Department of Emergency MedicineIcahn School of Medicine at Mount SinaiNew YorkUSA
  6. 6.The Charles Bronfman Institute of Personalized MedicineIcahn School of Medicine at Mount SinaiNew YorkUSA
  7. 7.Yale School of Public HealthYale UniversityNew HavenUSA