Evidence map›Paper›PMID 26743561›Full record

ArticlePrenatal diagnosis2016

What results to disclose, when, and who decides? Healthcare professionals' views on prenatal chromosomal microarray analysis.

Shiri Shkedi-Rafid, Angela Fenwick, Sandi Dheensa, Diana Wellesley, Anneke M Lucassen

Abstract read
In one paragraph

Article in Prenatal diagnosis, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed
–field-weighted citation impact
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

10 citing papers in PubMed.

  1. Article
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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.

Shiri Shkedi-RafidClinical Ethics and Law, Faculty of Medicine, University of Southampton, Southampton, UK.
Angela FenwickClinical Ethics and Law, Faculty of Medicine, University of Southampton, Southampton, UK.
Sandi DheensaClinical Ethics and Law, Faculty of Medicine, University of Southampton, Southampton, UK.
Diana WellesleyWessex Clinical Genetics Service, University Hospitals Southampton, Southampton, UK.
Anneke M LucassenClinical Ethics and Law, Faculty of Medicine, University of Southampton, Southampton, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesThis study explored the views of healthcare professionals (HCPs) in the UK about what information should be disclosed, when; and whether women/parents should be given a choice as to what they wish to know.

methodsQ-methodology was used to assess the views of 40 HCPs (genetic HCPs, fetal medicine experts, lab-scientists).

resultsMost participants agreed that variants of unknown clinical significance should not be disclosed. Participants were divided between those who considered variants of uncertain clinical significance helpful for parents and clinicians, and those who considered them harmful. Although recognising the potential disadvantages of disclosing risks for adult-onset conditions, participants thought it would be difficult to withhold such information once identified. Participants largely supported some parental involvement in determining which results should be returned. Most participants believed that information obtained via CMA testing in pregnancy should either be disclosed during pregnancy, or not at all.

conclusionHCPs taking part in the study largely believed that variants that will inform the management of the pregnancy, or are relevant to other family members, should be reported. Recent UK guidelines, published after this research was completed, reflect these opinions.

Indexed as

Attitude of Health PersonnelChoice BehaviorDisclosureMicroarray AnalysisAdultAge of OnsetChromosome DisordersFemaleHumansMalePregnancyPrenatal DiagnosisProfessional-Patient RelationsSurveys and QuestionnairesTime FactorsUncertainty

Identifiers

PMID26743561
PMCPMC5067646

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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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.