Evidence map›Paper›PMID 28159847›Full record

ArticleBMJ open2017

Approaching confidentiality at a familial level in genomic medicine: a focus group study with healthcare professionals.

Sandi Dheensa, Angela Fenwick, Anneke Lucassen

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PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
29citing papers in PubMed, 2 pooled it
–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

29 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Disclosure of genetic information to family members: a systematic review of normative documents.Genetics in medicine : official journal of the American College of Medical Genetics · 2021
    Pooled it
  2. Delivering genomic medicine in the United Kingdom National Health Service: a systematic review and narrative synthesis.Genetics in medicine : official journal of the American College of Medical Genetics · 2019
    Pooled it
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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

3 authors.

Sandi DheensaFaculty of Medicine, Clinical Ethics and Law, University of Southampton, Southampton General Hospital, Southampton, UK.
Angela FenwickFaculty of Medicine, Clinical Ethics and Law, University of Southampton, Southampton General Hospital, Southampton, UK.
Anneke LucassenFaculty of Medicine, Clinical Ethics and Law, University of Southampton, Southampton General Hospital, Southampton, UK.

Funding

Wellcome TrustWellcome Trust 110486/Z/15/Z
6 · The paper itself

Abstract

objectivesClinical genetics guidelines from 2011 conceptualise genetic information as confidential to families, not individuals. The normative consequence of this is that the family's interest is the primary consideration and genetic information is shared unless there are good reasons not to do so. We investigated healthcare professionals' (HCPs') views about, and reasoning around, individual and familial approaches to confidentiality and how such views influenced their practice.

method16 focus groups with 80 HCPs working in/with clinical genetics services were analysed, drawing on grounded theory.

resultsParticipants raised seven problems with, and arguments against, going beyond the individual approach to confidentiality. These problems fell into two overlapping categories: 'relationships' and 'structures'. Most participants had never considered ways to-or thought it was impossible to-treat familial genetic information and personal information differently. They worried that putting the familial approach into practice could disrupt family dynamics and erode patient trust in the health service. They also thought they had insufficient resources to share information and feared that sharing might change the standard of care and make them more vulnerable to liability.

conclusionsA familial approach to confidentiality has not been accepted or adopted as a standard, but wider research suggests that some of the problems HCPs perceived are surmountable and sharing in the interest of the family can be achieved. However, further research is needed to explore how personal and familial genetic information can be separated in practice. Our findings are relevant to HCPs across health services who are starting to use genome tests as part of their routine investigations.

Indexed as

Attitude of Health PersonnelDisclosureFamilyGenetic TestingConfidentialityCross-Sectional StudiesFamily RelationsFocus GroupsGenomicsHumansPractice Guidelines as TopicTrustGENETICSMEDICAL ETHICSQUALITATIVE RESEARCH

Identifiers

PMID28159847
PMCPMC5293977

What OpenQuestion holds

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LicenceCC BY
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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.