Availability of treatment drives decisions of genetic health professionals about disclosure of incidental findings.
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 treatment for the condition above all other characteristics included in the study. The framework of this discrete choice experiment can be used to investigate the preferences of other stakeholders such as paediatricians and parents about disclosure of incidental findings. The results of this study may be considered when assessing which categories of incidental findings are most suitable for disclosure in clinical practice.
1] Genetics Education and Health Research, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia [2] Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia.
Erin
E
Turbitt
1] Department of Statistical Science, University of Idaho, Moscow, ID, USA [2] Clinical Epidemiology and Biostatistics Unit, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.
Michelle M
MM
Wiest
1] Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia [2] Public Health Genetics, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.
Jane L
JL
Halliday
1] Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia [2] Clinical Genetics Research, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia.
David J
DJ
Amor
1] Genetics Education and Health Research, Murdoch Childrens Research Institute, Melbourne, Victoria, Australia [2] Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia.
Sylvia A
SA
Metcalfe
D000293:Adolescent; D000328:Adult; D002755:Choice Behavior; D003657:Decision Making / Q000941:ethics*; D030881:Disclosure; D005260:Female; D005820:Genetic Testing; D005826:Genetics, Medical / Q000941:ethics*; D006282:Health Personnel; D006801:Humans; D033162:Incidental Findings; D008297:Male; D008875:Middle Aged; D057240:Patient Preference; D011795:Surveys and Questionnaires; D055815:Young Adult