Literature DB >> 34997232

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

Amicia Phillips1, Thomas Bronselaer2, Pascal Borry2, Ine Van Hoyweghen3, Danya F Vears2,4,5, Laurent Pasquier2,6, Stefaan Callens2.   

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.
© 2021. The Author(s), under exclusive licence to European Society of Human Genetics.

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Year:  2022        PMID: 34997232      PMCID: PMC9259709          DOI: 10.1038/s41431-021-01016-3

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   5.351


  8 in total

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2.  Genetic testing legislation in Western Europe-a fluctuating regulatory target.

Authors:  Sirpa Soini
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Authors:  Laura E Forrest; Martin B Delatycki; Loane Skene; MaryAnne Aitken
Journal:  Eur J Hum Genet       Date:  2007-03-28       Impact factor: 4.246

Review 4.  Disclosing genetic information to at-risk relatives: new Australian privacy principles, but uniformity still elusive.

Authors:  Margaret F A Otlowski
Journal:  Med J Aust       Date:  2015-04-06       Impact factor: 7.738

Review 5.  How to inform relatives at risk of hereditary diseases? A mixed-methods systematic review on patient attitudes.

Authors:  L M van den Heuvel; E M A Smets; J P van Tintelen; I Christiaans
Journal:  J Genet Couns       Date:  2019-06-19       Impact factor: 2.537

6.  Evaluating Lynch syndrome in very early onset colorectal cancer probands without apparent polyposis.

Authors:  Kory W Jasperson; Thuy M Vu; Angela L Schwab; Deborah W Neklason; Miguel A Rodriguez-Bigas; Randall W Burt; Jeffrey N Weitzel
Journal:  Fam Cancer       Date:  2010-06       Impact factor: 2.375

Review 7.  The importance of BRCA1 and BRCA2 genes mutations in breast cancer development.

Authors:  Amir Mehrgou; Mansoureh Akouchekian
Journal:  Med J Islam Repub Iran       Date:  2016-05-15

8.  Disclosure of genetic information to family members: a systematic review of normative documents.

Authors:  Amicia Phillips; Pascal Borry; Ine Van Hoyweghen; Danya F Vears
Journal:  Genet Med       Date:  2021-07-07       Impact factor: 8.822

  8 in total
  2 in total

1.  Clinical genomics testing: mainstreaming and globalising.

Authors:  Alisdair McNeill
Journal:  Eur J Hum Genet       Date:  2022-07       Impact factor: 5.351

2.  Comment on Informing relatives of their genetic risk: an examination of the Belgian context.

Authors:  Aisling de Paor
Journal:  Eur J Hum Genet       Date:  2022-03-01       Impact factor: 5.351

  2 in total

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