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Genomic tools for health: Secondary findings as findings to be shared.
Miner, Skye A; Similuk, Morgan; Jamal, Leila; Sapp, Julie; Berkman, Benjamin E.
Afiliação
  • Miner SA; Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, MD; Department of Medical Humanities and Bioethics, College of Medicine, University of Arkansas for Medical Sciences, Little Rock, AR.
  • Similuk M; Centralized Sequencing Program, Division of Intramural Research, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD.
  • Jamal L; Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, MD; NHGRI/NCI/JHU Genetic Counseling Training Program, National Human Genome Research Insitute, Bethesda, MD.
  • Sapp J; Center for Precision Health Research, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD; Division of Intramural Research, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD.
  • Berkman BE; Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, MD; Division of Intramural Research, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD. Electronic address: berkmanbe@mail.nih.gov.
Genet Med ; 24(11): 2220-2227, 2022 11.
Article em En | MEDLINE | ID: mdl-35980380
PURPOSE: Whether and how to disclose secondary finding (SF) information to children is ethically debated. Some argue that genetic testing of minors should be limited to preserve the child's future autonomy. Others suggest that disclosure of SFs can occur if it is in the best interests of the child. However, the ways that parents conceptualize and weigh their child's future autonomy against the interests of their child and other family members are unknown. METHODS: To explore how parents understand SF disclosure in the context of their child and other family members' lives, we conducted semistructured interviews with 30 families (40 parents in total). All parents had children who were enrolled in a genetic sequencing protocol that returned results by default. RESULTS: We found that parents did not routinely conceptualize SFs as distinctive health information. Rather parents saw this information as part of their child's overall health. To make decisions about disclosure, parents weighed their child's ability to understand the SF information and their other family member's need to know. CONCLUSION: Because most families desired SF information, we argue that disclosure of SF be reconceptualized to reflect the lived experiences of those who may receive this information.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Pais / Família Tipo de estudo: Diagnostic_studies / Prognostic_studies / Qualitative_research Aspecto: Ethics Limite: Child / Humans Idioma: En Revista: Genet Med Assunto da revista: GENETICA MEDICA Ano de publicação: 2022 Tipo de documento: Article País de publicação: Estados Unidos
Texto completo
Adicionar na Minha BVS
Imprimir
XML
PubMed Links
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Pais / Família Tipo de estudo: Diagnostic_studies / Prognostic_studies / Qualitative_research Aspecto: Ethics Limite: Child / Humans Idioma: En Revista: Genet Med Assunto da revista: GENETICA MEDICA Ano de publicação: 2022 Tipo de documento: Article País de publicação: Estados Unidos