Evidence map›Paper›PMID 24848746›Full record

SynthesisEuropean journal of human genetics : EJHG2015

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

Open access · bronzeAbstract readSystematic Review
PubMed Full text at PMC Publisher
In one paragraph

Synthesis in European journal of human genetics : EJHG, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
23citing papers in PubMed, 3 pooled it
4.2field-weighted citation impact, top 6% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

23 citing papers in PubMed, 3 syntheses or guidelines pooled it, 49 citations in OpenAlex.

  1. Operationalizing and Measuring Informed Choice in Health Care: An Umbrella Review.Medical decision making : an international journal of the Society for Medical Decision Making · 2026
    Pooled it
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  7. Time for a New Norm: Experiences of 'Being Informed' and 'Having Choice' for Prenatal Screening for Chromosomal Conditions: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2025
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  15. Informed decision making and psychosocial outcomes in pregnant and nonpregnant women offered population fragile X carrier screening.Genetics in medicine : official journal of the American College of Medical Genetics · 2017
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  16. Review
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  18. Article
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  20. Responsible implementation of expanded carrier screening.European journal of human genetics : EJHG · 2016
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors at 1 institution in 1 country.

Alice Grace Ames1] 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 Metcalfe1] Genetics Education and Health Research, Murdoch Childrens Research Institute, Parkville, Victoria, Australia [2] Department of Paediatrics, The University of Melbourne, Melbourne, Victoria, Australia.
Alison Dalton Archibald1] 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.
Rony Emily Duncan1] 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.
Jon EmeryGeneral Practice and Primary Care Academic Centre, University of Melbourne, Parkville, Victoria, Australia.
University of Melbourne · AU

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Choice BehaviorGenetic TestingMass ScreeningReproductionDecision MakingDown SyndromeHealth Knowledge, Attitudes, PracticeHeterozygoteHumans

Identifiers

PMID24848746
PMCPMC4266751
OpenAlexW1995892094

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.