Evidence map›Paper›PMID 29700390›Full record

ArticleEuropean journal of human genetics : EJHG2018

Using a genetic test result in the care of family members: how does the duty of confidentiality apply?

Michael Parker, Anneke Lucassen

Open access · hybridAbstract read
In one paragraph

Article in European journal of human genetics : EJHG, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
15citing papers in PubMed, 3 pooled it
4.6field-weighted citation impact, top 5% 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

15 citing papers in PubMed, 3 syntheses or guidelines pooled it, 36 citations in OpenAlex.

  1. Pooled it
  2. 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
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  12. Rethinking the ethical principles of genomic medicine services.European journal of human genetics : EJHG · 2020
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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

2 authors at 2 institutions in 1 country.

Michael ParkerEthox Centre, University of Oxford, Oxford, UK.
Anneke LucassenClinical Ethics and Law, Faculty of medicine, University of Southampton, Southampton, UK. annekel@soton.ac.uk.ORCID http://orcid.org/0000-0003-3324-4338
Princess Anne Hospital · GBUniversity of Oxford · GB

Funding

Wellcome Trust 203132/Z/16/ZWellcome Trust 208053LUCASSENWellcome Trust 208053/Z/17/Z
6 · The paper itself

Abstract

The use of genetic and genomic testing is becoming more widespread in healthcare and more inherited explanations for family history of diseases or conditions are being uncovered. Currently, relevant genetic information is not always used in the care of family members who might benefit from it, because of health professionals' fears of inappropriately breaching another family member's confidence. Such examples are likely to increase as testing possibilities expand. Here we present the case for use of familial information in the care and treatment of family members. We argue that whilst a clinical diagnosis in person A is confidential, the discovery of a familial factor that led to this diagnosis should be available for use in depersonalised form by health professionals to inform the testing and clinical care of other family members. The possibility of such use should be made clear in clinical practice at the time of initial testing, but should not require consent from the person in whom the familial factor was first identified. We call for further debate on these questions in the wake of high profile non-disclosure of genetic information cases, and forthcoming Data Protection legislation changes.

Indexed as

FamilyConfidentialityGenetic CounselingGenetic PrivacyGenetic TestingGenomicsHealth PersonnelHumans

Identifiers

PMID29700390
PMCPMC6018806
OpenAlexW2799899138

What OpenQuestion holds

Textmetadata
LicenceTDM
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.