Understanding participation by African Americans in cancer genetics research

J Natl Med Assoc. Jul-Aug 2012;104(7-8):324-30. doi: 10.1016/s0027-9684(15)30172-3.

Abstract

Purpose: Understanding genetic factors that contribute to racial differences in cancer outcomes may reduce racial disparities in cancer morbidity and mortality. Achieving this goal will be limited by low rates of African American participation in cancer genetics research.

Method: We conducted a qualitative study with African American adults (n = 91) to understand attitudes about participating in cancer genetics research and to identify factors that are considered when making a decision about participating in this type of research.

Results: Participants would consider the potential benefits to themselves, family members, and their community when making a decision to participate in cancer genetics research. However, concerns about exploitation, distrust of researchers, and investigators' motives were also important to participation decisions. Individuals would also consider who has access to their personal information and what would happen to these data. Side effects, logistical issues, and the potential to gain knowledge about health issues were also described as important factors in decision making.

Conclusion: African Americans may consider a number of ethical, legal, and social issues when making a decision to participate in cancer genetics research. These issues should be addressed as part of recruitment efforts.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • African Americans*
  • Attitude*
  • Decision Making*
  • Female
  • Focus Groups
  • Humans
  • Male
  • Middle Aged
  • Neoplasms / ethnology*
  • Neoplasms / genetics*
  • Patient Participation*
  • Qualitative Research