Perspectives regarding family disclosure of genetic research results in three racial and ethnic minority populations
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ORIGINAL ARTICLE
Perspectives regarding family disclosure of genetic research results in three racial and ethnic minority populations Xuan Zhu 1 & Susanna N. Basappa 1 & Jennifer L. Ridgeway 2 & Monica L. Albertie 3 & Elizabeth Pantoja 3 & Darin Prescott 4 & Carmen Radecki Breitkopf 1 Received: 2 October 2019 / Accepted: 11 June 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020
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) decisionmaking 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. Keywords Return of genetic research result . Genetic research . Racial and ethnic minorities . Family disclosure
As genetic and genomic health research continues to progress, determining how to manage individual research results (IRR) that consist of secondary (or incidental) findings uncovered in the course of research that may be of medical value or utility to the research participant is of growing importance (Bombard et al. 2019; Bredenoord et al. 2011; Knoppers et al. 2012;
Electronic supplementary material The online version of this article (https://doi.org/10.1007/s12687-020-00472-6) contains supplementary material, which is available to authorized users. * Xuan Zhu [email protected] 1
Department of Health Sciences Research, Mayo Clinic, 200 First Street SW, Rochester, MN 55905, USA
2
Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, MN, USA
3
Center for Health Equity and Community Engagement Research, Mayo Clinic, Jacksonville, FL, USA
4
Lower Sioux Health Care Center, Morton, MN, USA
Middleton et al. 2015; Wolf et al. 2015). Unlike in the clinical care setting where patients choose to
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