A duty of care to a patient’s genetic relatives?

Legal cases in the UK suggest that it is at least arguable that an HCP has a legal duty to disclose genetic risks to genetic relatives—in other words, HCPs may owe a duty of care to third parties regarding the proper management of familial genetic information. However, the precise nature and scope of this duty is as yet unclear, and some might read this to include an obligation to disclose information to relatives. While we argue below that this is not necessarily so, the prevailing uncertainty must be addressed because—whatever the interpretation—the failure to discharge such a duty ultimately may lead to a successful action in negligence.

In the recent English case of ABC v St George’s Healthcare NHS Trust and others,16 the patient (father) was clear that he did not want his daughters to be told about his Huntington’s disease diagnosis, expressing a particular concern that one of his daughters, who was pregnant, might seek an abortion. Despite questioning the wisdom of his decision, the HCPs involved did not disclose the information. The uninformed daughter went on to give birth and subsequently discovered her father’s diagnosis. She brought an action claiming, among other things, that if she had known of her father’s diagnosis, she would have elected to terminate her pregnancy due to her concerns about being able to parent should she develop Huntington’s disease. The daughter’s claim was framed as a professional legal duty to inform her of her own risks (based on those discovered in her father). The case was initially struck out by the High Court in 2015, but in 2017, the Court of Appeal suggested that a duty of care owed by HCPs to genetic relatives may indeed be possible under English law, at least in the context of a highly penetrant monogenetic disorder. As a matter of formal legal process, this hearing before the Court of Appeal was solely to determine whether an argument could be made in law in such unprecedented circumstances. That is, as a matter of legal policy, the question was, might such a duty of care be successfully argued? Even if this were so successfully argued, it would be a separate matter for the claimants to argue their own facts before the High Court.

The Court of Appeal dealt with nine separate policy arguments posed by the defendant Trust, ultimately finding that, depending on the circumstances of a case, it may be fair, just and reasonable to impose a legal duty on a clinician to inform a patient’s relatives about their increased genetic risk. Lord Irwin ruled that, in a situation where professional judgement falls in favour of disclosure, it was ‘not necessarily correct that the law should so clearly incentivise obligations in one direction but not the other’ ([2017] EWCA Civ 336). Lord Irwin also opined that:

• The duty of confidentiality is not absolute, with both legislative and case law exceptions.

• The putative right ‘not to know’ certain genetic information does not preclude a duty of care; concerns about psychological harm from knowing arise already, in relation to the transmission of such information with the consent of the diagnosed patient to his or her relative.

• There may be cases in which nothing would be gained from informing a relative of the risk of transmission (eg, if the claimant was past childbearing age, there was no cure and the claimant would be frightened), in which case no duty of care may be cast; thus, the discharge of any duty of care will always require a case-by-case determination.

• Although there were no closely aligned cases in UK law to date, a duty of care to a third party has been recognised in other jurisdictions in this area; and furthermore, the development of a duty of care at common law is properly the remit of the judiciary instead of Parliament, as otherwise, the law would ‘ossify’.

The case is now expected to go to trial, where the High Court will examine whether clinicians can owe a duty of care to patients’ relatives to inform them about actionable genetic risks.

Professional guidance

Professional guidance encourages HCPs to use their professional judgement and consider whether harm to family members might be averted by disclosure of certain genetic risk information. The General Medical Council (GMC) considers that information disclosure to others without the patient’s consent—in other words, a breach of confidence—is justified ‘if failure to do so may expose others to a risk of death or serious harm’.13 Guidance of the Joint Committee on Genomics in Medicine deals specifically with genetic information and reiterates that confidentiality is not absolute.14 In the context of genetic information, current GMC confidentiality guidelines state that if a patient refuses to consent to information being disclosed that would benefit others (ie, genetic relatives), disclosure might still be justified ‘in the public interest if failure to disclose the information leaves others at risk of death or serious harm’.13

The professional guidance recognises, therefore, that a lack of access to the information itself may carry risk of serious harm to identifiable people. Despite this position, the wording in the GMC confidentiality guidelines is rather vague with respect to key phrases such as ‘public interest’ and ‘serious harm’; furthermore, it might be read as suggesting that resolution of the disclosure dilemma is a merely discretionary matter, rather than a core part of a professional’s obligations. The public interest ground does not seem to provide an adequate legal basis for modifying the obligation of confidence in the context of the disclosure of genetic information to a patient’s relatives, despite the fact that the GMC guidance makes clear that protection of private interests is also a matter of public interest. And yet, in the High Court in ABC, Nicol J seemed to rule out the ability to rely on public interest as a legal basis for setting aside the obligation of confidence when he said: ‘What was put against the public interest in preserving confidence in the present context was not a public interest in disclosure, but the private interest of the Claimant’ ([2015] EWHC 1394 (QB) at para 13).

Thus, there is currently no legal basis for setting aside the duty of confidentiality in order to disclose genetic risk information to relatives. If there is no clear legal basis on which to set aside this obligation, and HCPs are acutely aware of their duty of confidence to their patients, these professionals are likely to feel anxious about acting on a discretion to disclose. Even if they believe their discretionary judgement to be professionally correct, they may still be concerned about whether it will be found to be legally correct. If there were a duty of care owed to third parties that involves possible disclosure of genetic information, it would have to entail a corollary legal basis to set aside the conflicting legal duty to maintain confidence where due process had determined that greater weight be given to disclosure of the information. It is in the context of determining the relative weight of the respective duties that clear principles are needed to consider how they might be balanced.17 Here, the law can help to clarify such matters, as we discuss further below.

In our view, the coexistence of duties of confidentiality to patients and care to patients’ relatives reflects the discretion that is afforded by professional guidance. Indeed, HCPs increasingly find an individual patient focus to be inappropriate where genetic inheritance is concerned.18 Even if relatives are not yet patients, in certain circumstances they are likely to become so. Moreover, a patient can sometimes benefit from a genetic diagnosis by providing details of presence or absence of signs or symptoms in relatives (ie, a family history); it is in some ways unfair for patients to veto disclosure of something to other family members that has been found as a result of information about family members.

The concern in some quarters, though, is that the coexistence of duties will set up an irresolvable tension for HCPs. We argue below that this is not inevitable, and indeed the two duties could coexist in a way that makes exercising difficult professional discretion easier for HCPs, and potentially improves the care afforded to those who are affected by genetic illness.

What would the duty to consider the interests of genetic relatives entail?

One may argue that the existence of a legal duty of care to genetic relatives might well lead some HCPs to bypass the professional balancing exercise and interpret this as an absolute requirement to disclose information in all circumstances, even prior to having a discussion with the patient to encourage him or her to notify at-risk relatives. This would be an unfortunate misinterpretation of the duty and constitute poor professional practice. To mitigate this risk, it is necessary to provide specificity about when the duty to consider the interests of relatives triggers an obligation to disclose information, as part of a wider range of actions that can be taken by an HCP. In this regard, we highlight the significance of the factors set out above. Moreover, precisely because this pairing of duties sharpens the focus on the health and well-being of family members, we strongly advise against equating a duty of care with a broadly constructed duty to make full, active disclosure. Instead, full, active disclosure of genetic risk information might be only one possible means of discharging this duty.

A duty to consider the interests of genetic relatives may be discharged in various ways, including, depending on the context, non-disclosure to relatives. Thus, this duty would also accommodate a possible interest in not knowing. Some relatives might prefer not to have unknown and unsolicited information thrust on them. If the HCP has a duty of care that is predicated on recognising the interests of relatives, and on using careful professional judgement in discerning when these interests are engaged, then non-disclosure must also be part of the calculus.19 Were disclosure to be considered the professionally and legally appropriate position, there are various forms that such disclosure could take. Disclosing to relatives, for example, only that certain information regarding familial genetic risk is available would mean the relatives are (potentially) empowered to act on it. Thus, this duty could sometimes be satisfied by a general indication that information is available (which thus may not breach confidence), or initiating discussions with other relatives who have the relevant genetic information and are willing to share it. In the case of ABC, for example, that would then involve telling the daughter that her father’s symptomatology (that she knew about) could indicate an inherited tendency that she might want to look into.

Ultimately, a duty to consider the interests of genetic relatives would require HCPs to exercise reasonable care to ascertain the nature and extent of information provision that would best serve relatives’ interests, and any possible impacts of the manner in which it is communicated, as part of determining whether disclosure is justified.20 The duty entails HCPs considering the interests of known relatives of the patient with the pertinent genetic (risk) information, and assessing whether disclosure is warranted in the particular circumstances—and if so, to whom—and whether the expected benefits of doing so outweigh the risk of harm to either the patient or the relative(s). Indeed, the general principle of data minimisation, which is one of the core principles underpinning data protection law (eg, the EU General Data Protection Regulation 2016/679 and the UK’s Data Protection Act 2018), would apply to any disclosure of confidential patient information, such that only information that is necessary for the purposes of informing the relative of their risk should be disclosed.

Conclusion

Confidentiality is a deeply entrenched legal duty in the relationship between HCPs and their patients. Where an HCP wants to act in a way that may on the face of it breach this duty, they will want to be sure that there is a legal basis that negates that breach. In the context of healthcare, the legal basis which is usually relied on to negate a breach of confidence is consent. Where consent is not forthcoming, there is little scope for another legal basis to apply unless there is a clear risk of serious harm—which has traditionally focused on violence21—that allows the professional to rely on the public interest exception. As we have seen, HCPs worry that the public interest exception is not an appropriate legal basis for setting aside the duty of confidence where the HCP believes at-risk relatives should be told about relevant information, yet consent from the index patient is not forthcoming. The creation of a duty to consider the interests of genetic relatives, which in this instance would entail an obligation to disclose, would provide a legal basis for setting aside conflicting legal duties which are of lower priority. This would allow HCPs to act in line with their considered professional opinions without fear of legal action.

Confidentiality is not meant to be invariably wielded as a shield in the HCP’s armament—HCPs should not default to an assumption that the patient’s wishes are always the most important issue. Nor, however, should HCPs always assume that disclosure of genetic risk information to relatives is always the correct or best ethical and legal thing to do. Looking back at the ABC case, it is arguable that the daughter’s position and pregnancy were of greater importance than the father’s desire not to share the information and as such, confidentiality could—and indeed should—have been justifiably breached.

Rather than cause anxiety for HCPs, establishing coexisting duties of care and confidentiality—framed as a composite duty to consider the interests of genetic relatives—may allow them to act more confidently in line with the discretion that professional guidance has long afforded them, without the fear of legal action for conforming to their professional judgement. In sum, HCPs should not view a duty of care to genetic relatives as a ‘legal stick’ with which they are beaten, but instead as legal protection to act in line with their existing professional best practice.