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Predictive testing in minors: the need for empirical evidence
  1. Martin B Delatycki1,2,3,
  2. Cara Mand1,4,
  3. Lynn Gillam5,6,
  4. Rony Duncan1,3,7
  1. 1Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Parkville, Victoria, Australia
  2. 2Department of Clinical Genetics, Austin Health, Heidelberg, Victoria, Australia
  3. 3Department of Paediatrics, The University of Melbourne, Parkville, Victoria, Australia
  4. 4Monash University, Clayton, Victoria, Australia
  5. 5Children's Bioethics Centre, Royal Children's Hospital, Parkville, Victoria, Australia
  6. 6School of Population Health, The University of Melbourne, Parkville, Victoria, Austraila
  7. 7The Centre for Adolescent Health, Royal Children's Hospital, Parkville, Victoria, Australia
  1. Correspondence to Professor Martin B Delatycki, Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Royal Children's Hospital, Flemington Road, Parkville, Victoria 3052, Australia; martin.delatycki{at}ghsv.org.au

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We thank Clarke, Robertson and Kerruish, Elger, Lucassen and Fenwick for their commentaries on our recent publication in J Med Ethics, ‘Predictive genetic testing in minors for late-onset conditions: a chronological and analytical review of the ethical arguments’.15

Elger, Robertson and Kerruish generally support the stance we have proposed in our paper, that being to seek empirical evidence to support or refute the ethical arguments for or against predictive testing of minors.2 ,3 Clarke, Lucassen and Fenwick, by contrast, mount a number of arguments against this approach and it is these commentaries that we wish to respond to in detail.

In his commentary, Clarke raises concerns about our assertion that there are questions in relation to predictive testing of minors that may be answered through empirical research.1 Clarke's concerns include the fact that a very long follow-up period is required to study predictive testing in young children, that some tested individuals and their families will be lost to follow-up and that the study would be biased as only some clinicians would enrol their patients into such a study. Clarke suggests instead that clinicians should report the outcomes …

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