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Commentary
Disclosure of genetic information to relatives: balancing confidentiality and relatives’ interests
  1. Anneke Lucassen1,
  2. Roy Gilbar2,3
  1. 1Faculty of Medicine, The Princess Anne Hospital, Southampton, UK
  2. 2School of Law, Netanya Academic College, Netanya, Israel
  3. 3School of Law, University of Leiceste, Leicester, UK
  1. Correspondence to Dr Roy Gilbar, School of Law, Netanya Academic College, Netanya 4223587 Israel; rg165{at}le.ac.uk

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Introduction

A recent English court decision raises an issue clinicians increasingly face, namely whether, when and how a patient’s genetic information should be communicated to at-risk relatives. In ABC v St. Georges Healthcare NHS Trust, a patient, diagnosed with Huntington’s disease (HD), refused consent to disclose this diagnosis to his daughter.1 The daughter knew her father was ill but not that its cause was heritable. When she discovered she was pregnant, she told her father’s clinicians. They considered disclosure to her, but since the patient insisted that his diagnosis should not be communicated to her, his refusal was respected. Sometime later the daughter was accidentally informed by her father’s clinician that he suffered from HD, so she herself underwent testing and was found to have inherited the condition. She brought a claim against her father’s clinicians for failure to inform her about his diagnosis when she was pregnant, claiming that she would have terminated her pregnancy if she tested positive, an opportunity denied to her because of non-disclosure. The English High Court struck out the claim prior to a full trial, stating that there was no duty of care to the daughter. However, in May 2017, the Court of Appeal overturned this decision and acknowledged that in principle clinicians practising genetics may owe a duty to warn a patient’s relatives.

Tensions around confidentiality and responsibilities to others are well described in practices around, for example, sexually transmitted diseases, yet in medical practice involving heritable risks, the prevailing discourse remains one that gives prominence to patient confidentiality. As genetics enters mainstream medical practice, knowing when it might be appropriate to alert relatives about heritable risks becomes an issue for medical practice in general. We argue that preserving confidences about clinical information, while informing relatives of a familial risk, is possible and should …

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