Research participants' opinions on genetic research and reasons for participation: a Jackson Heart Study focus group analysis

Ethn Dis. 2014 Summer;24(3):290-7.

Abstract

The Jackson Heart Study (JHS) convened focus groups to engage the community in dialogue on participation in the National, Heart, Lung and Blood Institute's Candidate Gene Resource (CARe) project. CARe, a genome wide association and candidate gene study, required the release of participant phenotypic and genotypic data with storage at NIH for widespread distribution to qualified researchers. The authors wanted to assess the willingness of an African American community to participate in the genetics research, given the past history of bioethical misconduct in ethnic minority communities. The discussion produced the following specific issues of interest: reasons for participants' interest in genetics research; participants' knowledge about the JHS; and participants' knowledge about genetics research and its advantages and disadvantages. Training on genetic issues was also developed for the JHS community and staff.

Publication types

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

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Black or African American / psychology*
  • Focus Groups
  • Genetic Research*
  • Genome-Wide Association Study*
  • Health Knowledge, Attitudes, Practice / ethnology*
  • Health Literacy
  • Humans
  • Middle Aged
  • Patient Participation / psychology*
  • Patient Selection
  • Research Subjects / psychology*
  • Socioeconomic Factors
  • Young Adult