Journal of Community Genetics

, Volume 2, Issue 3, pp 153–163 | Cite as

Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study

  • Samantha A. Streicher
  • Saskia C. Sanderson
  • Ethylin Wang Jabs
  • Michael Diefenbach
  • Meg Smirnoff
  • Inga Peter
  • Carol R. Horowitz
  • Barbara Brenner
  • Lynne D. Richardson
Original Article

Abstract

In order for DNA biobanks to be a valuable reservoir of genetic information, large numbers of participants from all racial and ethnic backgrounds need to be recruited. This study explored reasons for participating in a new biobank among primarily Hispanic and African American individuals, as well as their general attitudes towards genetic research, and their views on obtaining genetic tests. Focus groups were conducted with Mount Sinai Biobank participants recruited from predominantly lower income, minority communities. The topic guide included questions on The Mount Sinai Biobank, genetic research, and genetic testing. All focus groups were audio recorded, transcribed, and analyzed using thematic analysis. The six focus groups comprised 43 participants: 39 females and four males, aged 27–76 years, with a median household income category of $20,000–$39,999. Twenty-one participants were Hispanic, 20 African American, one Asian, and one White. Participants’ reasons for participating in the biobank included altruism, personal and family benefit, and general curiosity. Although there was evidence of conflation between genetic research and genetic testing, most participants held positive views of genetic research and expressed interest in receiving personal genetic test results. Participants wanted to learn more about genetic research and suggested various venues such as health fairs for disseminating information. Participation in biobanks by racial and ethnic minorities is apparently driven by altruism, and desire for personal or collective health benefits. Participants had generally positive attitudes, limited understanding of genetics and genetic research, and made useful suggestions regarding information dissemination mechanisms.

Keywords

African American DNA biobank Focus groups Hispanics Motives 

Notes

Acknowledgments

This work was supported fully by the Seed Grant Program of The Charles R. Bronfman Institute for Personalized Medicine. We gratefully acknowledge Meryem Chaudhry, Cindy Clesca, Patria Gerardo, Pauline Johnson, Emmanuella Joseph, Janice Lam, Natalia Lyons, and Sayume Romero for their contributions to the data collection. We are very grateful to the community consultants who generously gave their time to help with this study, and to all the individuals who participated in the focus groups.

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Copyright information

© Springer-Verlag 2011

Authors and Affiliations

  • Samantha A. Streicher
    • 1
    • 8
  • Saskia C. Sanderson
    • 1
    • 5
    • 8
  • Ethylin Wang Jabs
    • 1
    • 8
  • Michael Diefenbach
    • 2
    • 8
  • Meg Smirnoff
    • 3
    • 8
  • Inga Peter
    • 1
    • 8
  • Carol R. Horowitz
    • 4
    • 5
    • 8
  • Barbara Brenner
    • 6
    • 8
  • Lynne D. Richardson
    • 4
    • 7
    • 8
  1. 1.Department of Genetics and Genomic SciencesMount Sinai School of MedicineNew YorkUSA
  2. 2.Department of UrologyMount Sinai School of MedicineNew YorkUSA
  3. 3.Department of NursingMount Sinai School of MedicineNew YorkUSA
  4. 4.Department of Health Evidence and PolicyMount Sinai School of MedicineNew YorkUSA
  5. 5.Department of MedicineMount Sinai School of MedicineNew YorkUSA
  6. 6.Department of Preventive MedicineMount Sinai School of MedicineNew YorkUSA
  7. 7.Department of Emergency MedicineMount Sinai School of MedicineNew YorkUSA
  8. 8.The Charles R. Bronfman Institute for Personalized MedicineMount Sinai School of MedicineNew YorkUSA

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