Abstract
Where there is conflict between a patient's interests in non-disclosure of their genetic information to relatives and the relative's interest in knowing the information because it indicates their genetic risk, clinicians have customarily been able to protect themselves against legal action by maintaining confidence even if, professionally, they did not consider this to be the right thing to do. In ABC v St Georges Healthcare NHS Trust ([2017] EWCA Civ 336) the healthcare team recorded their concern about the wisdom of the patient's decision to withhold genetic risk information from his relative, but chose to respect what they considered to be an unwise choice. Even though professional guidance considers that clinicians have the discretion to breach confidence where they believe this to be justified, (Royal College of Physicians, Royal College of Pathologists and the British Society of Human Genetics, 2006; GMC, 2017) clinicians find it difficult to exercise this discretion in line with their convictions against the backdrop of the legal prioritisation of the duty to maintain confidence. Thus, the professional discretion is not being freely exercised because of doubts about the legal protection available in the event of disclosure. The reliance on consent as the legal basis for setting aside the duty of confidence often vetoes sharing information with relatives. This paper argues that an objective approach based on privacy, rather than a subjective consent-based approach, would give greater freedom to clinicians to exercise the discretion which their professional guidance affords.
Highlights
The position of consent as a lawful basis for setting aside the duty of confidence provides the basis for determining how competing interests are valued in the context of the sharing of familial genetic information
In the genetic medicine context one very recent study found that some participants expressed the view that asking patients' permission was undesirable as it would give them an opportunity to refuse. This evidence indicates that there is an objective position which holds that where relatives have the opportunity to access medical treatment upon knowing genetic information, the patient does not have a reasonable expectation of privacy in that information which they can rely upon to prevent disclosure to an at-risk relative
Where the reasons for non-disclosure are practical, in that they are based on the patient's distance from, loss of contact with, or dislike for the relative, or the patient's inability to understand and explain the information, it might be argued that an expectation of privacy is not objectively reasonable, and the patient's interest in not disclosing for these practical reasons should not attract legal protection on the basis that he or she has a ‘reasonable expectation of privacy’
Summary
The position of consent as a lawful basis for setting aside the duty of confidence provides the basis for determining how competing interests are valued in the context of the sharing of familial genetic information. It is argued that the concept of privacy, which is being increasingly recognised as the interest protected by the obligation of confidence, through the influence of Article 8 of the European Convention on Human Rights, could provide a mechanism for valuing legal interests in disclosure and non-disclosure of familial genetic information This development would enable clinicians to exercise the. European Journal of Medical Genetics 62 (2019) 308–315 discretion that professional guidance affords This discussion begins with a consideration of the general move away from consent as providing a lawful basis for processing persona data and confidential patient information. The piece investigates how the concept of a ‘reasonable expectation of privacy’ might map onto conflicts between maintaining confidence and permitting disclosure that arise in the event of a patient's refusal to share relevant genetic information with at-risk relatives
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