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The University of Southampton
Clinical Ethics, Law and SocietyResearch

Research project: Genetic testing of children for adult onset conditions - Dormant

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A genetic test can predict the likely onset of a disease many years in the future.

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In families where there is a disease with an inherited cause, parents may wish to know whether their children have inherited it. However, when the onset of the disease is not expected for many years, professional guidelines state that such testing should be delayed unless there is a medical benefit (e.g. screening, treatment) to testing. This is both to respect the child's future ability to decide for themselves as well as avoid potential psychological problems associated with knowing that a serious disease is likely in the future but that nothing can be done at present.

This two year project explored:-

  • how parents, and the professionals involved view genetic testing in childhood for adult onset conditions
  • how they can best communicate with each other
  • whether testing might be acceptable in certain circumstances.

Using both a survey of current practice across the UK and in-depth interviews of parents, young people and practitioners, our research will provide an evidence basis to guidance and help improve communication about these issues.

Dr Ingrid Holme was the lead researcher.

This project is now closed for recruitment.

We held a dissemination event at II Human Genetics Spanish Congress, Madrid, 4th April 2019.

The presentation slides can be accessed below.

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