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Most people share genetic test results with relatives even if the findings are normal: Family communication in a diverse population.
Hunter, Jessica Ezzell; Riddle, Leslie; Joseph, Galen; Amendola, Laura M; Gilmore, Marian J; Zepp, Jamilyn M; Shuster, Elizabeth; Bulkley, Joanna E; Muessig, Kristin R; Anderson, Katherine P; Goddard, Katrina A B; Wilfond, Benjamin S; Leo, Michael C.
Afiliação
  • Hunter JE; Genomics, Ethics, and Translational Research Program, RTI International, Research Triangle Park, NC; Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, Portland, OR. Electronic address: jehunter@rti.org.
  • Riddle L; Department of Humanities and Social Sciences, University of California, San Francisco, San Francisco, CA.
  • Joseph G; Department of Humanities and Social Sciences, University of California, San Francisco, San Francisco, CA.
  • Amendola LM; Medical Genomics Research, Illumina Inc., San Diego, CA.
  • Gilmore MJ; Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, Portland, OR.
  • Zepp JM; Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, Portland, OR.
  • Shuster E; Kaiser Permanente Center for Health Research, Portland, OR.
  • Bulkley JE; Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, Portland, OR.
  • Muessig KR; Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, Portland, OR.
  • Anderson KP; Department of Family Medicine, Ambulatory Care Services, Denver Health, Denver, CO.
  • Goddard KAB; Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, Portland, OR.
  • Wilfond BS; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Department of Pediatrics, University of Washington School of Medicine, Seattle, WA.
  • Leo MC; Kaiser Permanente Center for Health Research, Portland, OR.
Genet Med ; 25(11): 100923, 2023 11.
Article em En | MEDLINE | ID: mdl-37421176
PURPOSE: With increasing utilization of genetic testing, sharing genetic information can become part of general family health communication while providing biological relatives with important information about their own genetic risk. Importantly, little is known about motivations for and barriers to family communication of genetic information in historically underserved populations. METHODS: Using mixed methods, we explored patient experiences with family communication in a study population of English- and Spanish-speaking adults aged 18 to 49 years, enriched for participants from historically underserved backgrounds. Risk screening for hereditary cancer guided genetic testing for cancer risk genes and other medically actionable findings. RESULTS: Most participants overall (91%), including most with normal findings (89%), shared or planned to share their results with relatives. Common motivations for sharing results were to give relatives information about their genetic risk and because the participant thought the results were interesting. Reasons for not sharing were limited contact with relatives, perceptions of limited clinical utility for relatives, and concern that discussion of genetic information was stigmatized or taboo. CONCLUSION: Results demonstrate high rates of sharing genetic information, indicate motivations for sharing go beyond facilitating genetic testing for relatives, and suggest general willingness to share genetic information as part of family health communication.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Testes Genéticos / Neoplasias Tipo de estudo: Diagnostic_studies / Qualitative_research Limite: Adult / Humans Idioma: En Ano de publicação: 2023 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Testes Genéticos / Neoplasias Tipo de estudo: Diagnostic_studies / Qualitative_research Limite: Adult / Humans Idioma: En Ano de publicação: 2023 Tipo de documento: Article