Journal article
Measuring informed choice in population-based reproductive genetic screening: a systematic review
Alice Grace Ames, Sylvia Ann Metcalfe, Alison Dalton Archibald, Rony Emily Duncan, Jon Emery
European Journal of Human Genetics | NATURE PUBLISHING GROUP | Published : 2015
DOI: 10.1038/ejhg.2014.89
Abstract
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 ..
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Funding Acknowledgements
We thank Pho Chua, librarian at the Royal Children's Hospital, for her assistance. We acknowledge the funding enabling this research from the Murdoch Childrens Research Institute, Australian Postgraduate Award, and the Victorian Government's Operational Infrastructure Support Programme.