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Rethinking the "open future" argument against predictive genetic testing of children.
Garrett, Jeremy R; Lantos, John D; Biesecker, Leslie G; Childerhose, Janet E; Chung, Wendy K; Holm, Ingrid A; Koenig, Barbara A; McEwen, Jean E; Wilfond, Benjamin S; Brothers, Kyle.
Afiliación
  • Garrett JR; Children's Mercy Bioethics Center, Children's Mercy Kansas City, Kansas City, MO, USA. jgarrett@cmh.edu.
  • Lantos JD; Department of Pediatrics, University of Missouri-Kansas City, Kansas City, MO, USA. jgarrett@cmh.edu.
  • Biesecker LG; Children's Mercy Bioethics Center, Children's Mercy Kansas City, Kansas City, MO, USA.
  • Childerhose JE; Department of Pediatrics, University of Missouri-Kansas City, Kansas City, MO, USA.
  • Chung WK; National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA.
  • Holm IA; Division of Pediatric Clinical and Translational Research, University of Louisville School of Medicine, Louisville, KY, USA.
  • Koenig BA; Departments of Medicine and Pediatrics, Columbia University, New York, NY, USA.
  • McEwen JE; Division of Genetics and Genomics and the Manton Center for Orphan Diseases Research, and Department of Pediatrics, Harvard Medical School, Boston Children's Hospital, Boston, MA, USA.
  • Wilfond BS; UCSF Bioethics, University of California San Francisco, San Francisco, CA, USA.
  • Brothers K; National Human Genome Research Institute, National Institutes of Health, Bethesda, MD, USA.
Genet Med ; 21(10): 2190-2198, 2019 10.
Article en En | MEDLINE | ID: mdl-30894702
Professional consensus has traditionally discouraged predictive genetic testing when no childhood interventions can reduce future morbidity or mortality. However, advances in genome sequencing and accumulating evidence that children and families cope adequately with predictive genetic information have weakened this consensus. The primary argument remaining against testing appeals to children's "right to an open future." It claims that the autonomy of the future adult is violated when others make an irreversible choice to obtain or disclose predictive genetic information during childhood. We evaluate this argument and conclude that children's interest in an open future should not be understood as a right. Rather an open future is one significant interest to weigh against other important interests when evaluating decisions. Thus, predictive genetic testing is ethically permissible in principle, as long as the interests promoted outweigh potential harms. We conclude by offering an expanded model of children's interests that might be considered in such circumstances, and present two case analyses to illustrate how this framework better guides decisions about predictive genetic testing in pediatrics.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Pruebas Genéticas / Toma de Decisiones Tipo de estudio: Prognostic_studies / Risk_factors_studies Aspecto: Ethics Límite: Child / Child, preschool / Humans Idioma: En Revista: Genet Med Asunto de la revista: GENETICA MEDICA Año: 2019 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Estados Unidos

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Pruebas Genéticas / Toma de Decisiones Tipo de estudio: Prognostic_studies / Risk_factors_studies Aspecto: Ethics Límite: Child / Child, preschool / Humans Idioma: En Revista: Genet Med Asunto de la revista: GENETICA MEDICA Año: 2019 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Estados Unidos