Evidence map›Paper›PMID 34997232›Full record

ReviewEuropean journal of human genetics : EJHG2022

Informing relatives of their genetic risk: an examination of the Belgian legal context.

Amicia Phillips, Thomas Bronselaer, Pascal Borry, Ine Van Hoyweghen, Danya F Vears, Laurent Pasquier, Stefaan Callens

Abstract readReview
In one paragraph

Review in European journal of human genetics : EJHG, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing 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

8 citing papers in PubMed.

  1. Article
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  5. Article
  6. Clinical genomics testing: mainstreaming and globalising.European journal of human genetics : EJHG · 2022
    Article
  7. Article
  8. 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

7 authors.

Amicia PhillipsCenter for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium. amicia.phillips@kuleuven.be.ORCID http://orcid.org/0000-0002-4467-685X
Thomas BronselaerCenter for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.
Pascal BorryCenter for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.ORCID http://orcid.org/0000-0002-4931-9560
Ine Van HoyweghenLife Sciences & Society Lab, Centre for Sociological Research, KU Leuven, Leuven, Belgium.ORCID http://orcid.org/0000-0002-9402-2918
Danya F VearsCenter for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.ORCID http://orcid.org/0000-0002-6290-545X
Laurent PasquierCenter for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.ORCID http://orcid.org/0000-0003-3985-1286
Stefaan CallensCenter for Biomedical Ethics and Law, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium.ORCID http://orcid.org/0000-0003-1376-4643

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Findings from genomic sequencing can have important implications for patients and relatives. For this reason, most professional guidelines support that patients have an ethical duty to inform relatives and, when disclosure does not occur, most guidelines allow health-care professionals (HCPs) to breach confidentiality. Translating the ethical duties to respect the patient's confidentiality and prevent harm in at-risk relatives into legislation is a complex issue due to the both personal and familial nature of genetic information. In many countries there is no specific guideline or law addressing family communication of genetic information and thus it is unclear what duties patients and HCPs have towards at-risk relatives. Using Belgium as an example for countries in which this is the case, we examined the existing Belgian legislation in relation to three central topics: (1) patients' duties to family members, (2) respect for patient confidentiality and privacy, and (3) HCPs' duties to family members. We then investigated international legal frameworks and compared it with the Belgian context to see to what degree international precedent could aid in the interpretation of Belgian law. Based on our review of the legislation, we make recommendations for the interpretation of current law and examine whether there is sufficient legal precedent to answer the questions central to family communication of genetic information. Although we focus on the specific Belgian legislation, the discussions are relevant for many other countries that have similar legislative approaches.

Indexed as

DisclosureGenetic TestingBelgiumConfidentialityFamilyHumans

Identifiers

PMID34997232
PMCPMC9259709

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.