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Meta-Analysis
. 2015 Jan;23(1):8-21.
doi: 10.1038/ejhg.2014.89. Epub 2014 May 21.

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

Alice Grace Ames  1 , Sylvia Ann Metcalfe  1 , Alison Dalton Archibald  2 , Rony Emily Duncan  3 , Jon Emery  4
Affiliations
Meta-Analysis

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

Alice Grace Ames et al. Eur J Hum Genet. 2015 Jan.

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.

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Figures

Figure 1
Figure 1
Flow diagram of systematic review search results. *All corresponding authors (30) and 3 experts were contacted. Of the 21 studies identified, 19 were from corresponding authors and 2 from experts. The four studies meeting inclusion criteria were identified by corresponding authors (two) and by experts (two).
See this image and copyright information in PMC

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