Human Genetics Society of Australasia Position Statement: Predictive and Presymptomatic Genetic Testing in Adults and Children.

Item request has been placed! ×
Item request cannot be made. ×
loading   Processing Request
Read More Add to Saved list
  • Additional Information
    • Corporate Authors:
      Education, Ethics and Social Issues Committee of the Human Genetics Society of Australasia
    • Source:
      Publisher: Cambridge University Press Country of Publication: England NLM ID: 101244624 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1832-4274 (Print) Linking ISSN: 18324274 NLM ISO Abbreviation: Twin Res Hum Genet Subsets: MEDLINE
    • Publication Information:
      Publication: 2012- : Cambridge, England : Cambridge University Press
      Original Publication: Bowen Hills, QLD, Australia : Published for the ISTS by Australian Academic Press, [2005]-
    • Subject Terms:
      Genetic Testing*/ethics ; Genetic Counseling*; Humans ; Adult ; Child ; Australasia ; Human Genetics/ethics ; Female ; Male
    • 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.
    • Contributed Indexing:
      Keywords: Children; Ethics; Genetic testing; Impaired capacity to consent; Predictive testing
    • Publication Date:
      Date Created: 20240321 Date Completed: 20240529 Latest Revision: 20240529
    • Publication Date:
      20240529
    • Accession Number:
      10.1017/thg.2024.9
    • Accession Number:
      38509872