Perspectives regarding family disclosure of genetic research results in three racial and ethnic minority populations
| Autor: | Monica Albertie, Xuan Zhu, Carmen Radecki Breitkopf, Elizabeth Pantoja, Darin Prescott, Jennifer L. Ridgeway, Susanna N. Basappa |
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| Rok vydání: | 2020 |
| Předmět: |
0303 health sciences
medicine.medical_specialty Epidemiology Public health 030305 genetics & heredity Closeness Public Health Environmental and Occupational Health Ethnic group Focus group 03 medical and health sciences 0302 clinical medicine 030220 oncology & carcinogenesis Preparedness medicine population characteristics Original Article Thematic analysis Psychology Personally identifiable information Social psychology Genetics (clinical) |
| Zdroj: | J Community Genet |
| ISSN: | 1868-6001 1868-310X |
| DOI: | 10.1007/s12687-020-00472-6 |
| Popis: | 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. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s12687-020-00472-6) contains supplementary material, which is available to authorized users. |
| Databáze: | OpenAIRE |
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