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Human Genetics Society of Australasia Position Statement: Predictive and Presymptomatic Genetic Testing in Adults and Children.
Vears, Danya F; McLean, Alison; La Spina, Chloe; McInerney-Leo, Aideen.
Afiliación
  • Vears DF; Biomedical Ethics Research Group, Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
  • McLean A; Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia.
  • La Spina C; Department of Genetic Medicine, Westmead Hospital, Sydney, New South Wales, Australia.
  • McInerney-Leo A; Institute of Precision Medicine and Bioinformatics, Royal Prince Alfred Hospital, Sydney, New South Wales, Australia.
Twin Res Hum Genet ; 27(2): 120-127, 2024 Apr.
Article en En | MEDLINE | ID: mdl-38509872
ABSTRACT
This Position Statement provides guidelines for health professionals who work with individuals and families seeking predictive genetic testing and laboratory staff conducting the tests. It presents the major practical, psychosocial and ethical considerations associated with presymptomatic and predictive genetic testing in adults who have the capacity to make a decision, children and young people who lack capacity, and adults living with reduced or fluctuating cognitive capacity.Predictive Testing

Recommendations:

(1) Predictive testing in adults, young people and children should only be offered with pretest genetic counseling, and the option of post-test genetic counseling. (2) An individual considering whether to have a predictive test should be supported to make an autonomous and informed decision. Regarding Children and Young People (1) Predictive testing should only be offered to children and young people for conditions where there is likely to be a direct medical benefit to them through surveillance, use of prevention strategies, or other medical interventions in the immediate future. (2) Where symptoms are likely to develop in childhood, in the absence of direct medical benefit from this knowledge, genetic health professionals and parents/guardians should discuss whether undertaking predictive testing is the best course of action for the child and the family as a whole. (3) Where symptoms are likely to develop in adulthood, the default position should be to postpone predictive testing until the young person achieves the capacity to make an autonomous and informed decision. This is applicable regardless of whether there is some action that can be taken in adulthood.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Pruebas Genéticas / Asesoramiento Genético Límite: Adult / Child / Female / Humans / Male País/Región como asunto: Oceania Idioma: En Revista: Twin Res Hum Genet Asunto de la revista: GENETICA MEDICA Año: 2024 Tipo del documento: Article País de afiliación: Australia Pais de publicación: Reino Unido
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Pruebas Genéticas / Asesoramiento Genético Límite: Adult / Child / Female / Humans / Male País/Región como asunto: Oceania Idioma: En Revista: Twin Res Hum Genet Asunto de la revista: GENETICA MEDICA Año: 2024 Tipo del documento: Article País de afiliación: Australia Pais de publicación: Reino Unido