Perspectives regarding family disclosure of genetic research results in three racial and ethnic minority populations

Xuan Zhu, Susanna N. Basappa, Jennifer L. Ridgeway, Monica L. Albertie, Elizabeth Pantoja, Darin Prescott, Carmen Radecki Breitkopf

Research output: Contribution to journalArticlepeer-review

Abstract

The lack of data on perspectives of racial and ethnic minority populations regarding family disclosure of individual research results (IRR) hinders the development of return of IRR policies and practices that are meaningful and culturally appropriate in diverse populations. This research aims to uncover preferences regarding family disclosure of IRR and identify factors that may shape the preferences in three minority populations. Nine focus groups with 68 adult African American, Hispanic/Latinx, and American Indian/Alaska Native individuals were conducted. Data were analyzed using thematic analysis. Participants were willing to share IRR with relatives who elected to know and preferred a participant-driven (vs. researcher-driven) decision-making process. Privacy of personal information was deemed important, as were anticipated familial benefits from genetic information, except when improper use of the information was suspected. Factors influencing family disclosure decisions included the family’s biological and emotional closeness, and participants’ perceived mental preparedness of the relative. Family disclosure of IRR among racial and ethnic minority individuals is a complex decision-making process wherein issues of individual privacy are entangled with family dynamic and familial benefit considerations. These data suggest that policies surrounding family disclosure of IRR should carefully consider participant preferences and adopt a participant-driven approach.

Original languageEnglish (US)
Pages (from-to)433-443
Number of pages11
JournalJournal of Community Genetics
Volume11
Issue number4
DOIs
StatePublished - Oct 1 2020

Keywords

  • Family disclosure
  • Genetic research
  • Racial and ethnic minorities
  • Return of genetic research result

ASJC Scopus subject areas

  • Epidemiology
  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

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