Measuring informed choice in population-based reproductive genetic screening: a systematic review.
Genetic screening and health-care guidelines recommend that programmes should facilitate informed choice. It is therefore important that accurate measures of informed choice are available to evaluate such programmes. This review synthesises and appraises measures used to evaluate informed choice in population-based genetic screening programmes for reproductive risk. Databases were searched for studies offering genetic screening for the purpose of establishing reproductive risk to an adult population sample, in which aspects of informed choice were measured. Studies were included if, at a minimum, measures of uptake of screening and knowledge were used. Searches identified 1462 citations and 76 studies were reviewed in full text; 34 studies met the inclusion criteria. Over 20 different measures of informed choice were used. Many measures lacked adequate validity and reliability data. This systematic review will inform future evaluation of informed choice in population genetic screening programmes.
1] Genetics Education and Health Research, Murdoch Childrens Research Institute, Parkville, Victoria, Australia [2] Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia.
Alice Grace
AG
Ames
1] Genetics Education and Health Research, Murdoch Childrens Research Institute, Parkville, Victoria, Australia [2] Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia.
Sylvia Ann
SA
Metcalfe
1] Genetics Education and Health Research, Murdoch Childrens Research Institute, Parkville, Victoria, Australia [2] Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia [3] Victorian Clinical Genetics Services, Melbourne, Victoria, Australia.
Alison
A
Dalton Archibald
1] Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia [2] Centre for Adolescent Health, Murdoch Childrens Research Institute, Parkville, Victoria, Australia [3] Health Services Delivery for Adolescents, Murdoch Childrens Research Institute, Parkville, Victoria, Australia.
Rony Emily
RE
Duncan
General Practice and Primary Care Academic Centre, University of Melbourne, Parkville, Victoria, Australia.
Jon
J
Emery
D002755:Choice Behavior; D003657:Decision Making; D004314:Down Syndrome / Q000175:diagnosis / Q000453:epidemiology / Q000235:genetics; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006579:Heterozygote; D006801:Humans; D008403:Mass Screening; D012098:Reproduction