Article Text

Download PDFPDF

Familial genetic risks: how can we better navigate patient confidentiality and appropriate risk disclosure to relatives?
  1. Edward S Dove1,
  2. Vicky Chico2,
  3. Michael Fay3,
  4. Graeme Laurie1,
  5. Anneke M Lucassen4,5,
  6. Emily Postan1
  1. 1 School of Law, University of Edinburgh, Edinburgh, UK
  2. 2 School of Law, University of Sheffield, Sheffield, UK
  3. 3 School of Law, Keele University, Keele, UK
  4. 4 Faculty of Medicine, University of Southampton, Southampton, UK
  5. 5 Wessex Clinical Genetics Service, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  1. Correspondence to Edward S Dove, School of Law, University of Edinburgh, Edinburgh EH8 9YL, UK; edward.dove{at}ed.ac.uk

Abstract

This article investigates a high-profile and ongoing dilemma for healthcare professionals (HCPs), namely whether the existence of a (legal) duty of care to genetic relatives of a patient is a help or a hindrance in deciding what to do in cases where a patient’s genetic information may have relevance to the health of the patient’s family members. The English case ABC v St George’s Healthcare NHS Trust and others considered if a duty of confidentiality owed to the patient and a putative duty of care to the patient’s close relatives could coexist in this context. This article examines whether embracing the concept of coexisting duties could enable HCPs to respect duties in line with their clinical judgement, thereby providing legal support and clarity to professionals to allow them to provide the best possible genetics service to both the patient and their family. We argue that these dual duties, framed as a novel, composite duty to consider the interests of genetic relatives, could allow HCPs to exercise and act on their professional judgements about the relative value of information to family members, without fears of liability for negligence or breach of confidence.

  • law
  • ethics
  • family
  • genethics
  • genetic counselling/prenatal diagnosis

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

View Full Text

Statistics from Altmetric.com

Footnotes

  • Contributors All authors contributed to the manuscript equally.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests AML declares that she has served as an expert witness in the case of ABC v St George’s Healthcare NHS Trust and others. AML is supported by a Wellcome Collaborative Award entitled ‘Ethical Preparedness in Genomic Medicine’ (Award No: 208053/Z/17/Z).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Author note This article is based on research conducted with support from a Wellcome Senior Investigator Award entitled ‘Confronting the Liminal Spaces of Health Research Regulation’ (Award No: WT103360MA): http://www.liminalspaces.ed.ac.uk/.

  • Patient consent for publication Not required.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.