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Measuring informed choice in population-based reproductive genetic screening: a systematic review.


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 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.

SUBMITTER: Ames AG 

PROVIDER: S-EPMC4266751 | biostudies-literature | 2015 Jan

REPOSITORIES: biostudies-literature

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Measuring informed choice in population-based reproductive genetic screening: a systematic review.

Ames Alice Grace AG   Metcalfe Sylvia Ann SA   Dalton Archibald Alison A   Duncan Rony Emily RE   Emery Jon J  

European journal of human genetics : EJHG 20140521 1


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 popula  ...[more]

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