Availability of treatment drives decisions of genetic health professionals about disclosure of incidental findings
Erin Turbitt, Michelle M Wiest, Jane L Halliday, David J Amor, Sylvia A Metcalfe
European Journal of Human Genetics | NATURE PUBLISHING GROUP | Published : 2014
Contrasting opinions exist regarding the disclosure of incidental findings detected through clinical genomic testing. This study used a discrete choice experiment to investigate genetic health professionals' preferences for the disclosure of incidental findings in an Australian paediatric setting. Four attributes of conditions relating to incidental findings were investigated: availability of prevention and treatment, chance of symptoms ever developing, age of onset and severity. Questionnaires from 59 Australian genetic health professionals were analysed. Results show that when evaluating incidental findings for disclosure, these professionals value the availability of prevention and treatm..View full abstract
We thank the respondents in this study for their time and sharing their experiences and opinions. We thank Dr Melissa Hill for her input into the study design. This work was supported by the Victorian Government's Operational Infrastructure Support Program.