Abstract
Genetic testing can reveal information significant to patients’ relatives. This familial aspect raises an important question: should clinicians owe a duty to disclose genetic risk to patients’ blood relations? In ABC v. St George’s Healthcare NHS Trust and Smith and Another v. University of Leicester NHS Trust, the High Court rejected claims by relatives regarding genetic information. Both cases are being appealed. The High Court’s analysis of duty was restrictive; foreseeable harm and proximity thus far receiving minimal scrutiny. A detailed analysis indicates harm and proximity are important in defining the scope of a duty. The foreseeable harm is argued as medically actionable genetic conditions. Proximity could be demonstrated by claimants establishing themselves as identifiable victims of non-disclosure that ought to be in defendants’ contemplation as so affected. It is also argued a duty is not prohibited by the policy reasons relied upon in ABC: incremental development, confidentiality, a right not to know and psychiatric harm.
Introduction
Genetic information is increasingly becoming a source of litigation before the courts of England and Wales. In 2015, the High Court was presented with the case of ABC v. St George’s Healthcare NHS Trust; 1 in 2016, it has decided Smith and Another v. University of Leicester NHS Trust. 2 ABC involved a diagnosis of Huntington’s disease, a neurodegenerative genetic disorder. 3 The claimant’s father was convicted of the manslaughter of his wife (her mother) on grounds of diminished responsibility and sentenced to a hospital order under the Mental Health Act 1983. He was diagnosed with Huntington’s disease 2 years later but refused to allow this information to be communicated to his daughter, who was pregnant at the time. The claimant argued non-disclosure was negligent; had her father’s condition been disclosed she would have undergone testing and, after receiving a positive result, aborted her pregnancy. Smith concerned adrenoleukodystrophy (ALD) 4 and genetic information that may have resulted in better outcomes for the claimant’s brothers, one of whom had died. This case went further than ABC. ABC concerned genetic information the defendant possessed; in Smith, the claimants alleged negligence because of a failure to conduct a test on their second cousin, which would have expedited diagnosis of his suffering the adult version of ALD. 5 This diagnosis would have been disclosed, facilitating screening of the wider family, prompting earlier diagnosis and potentially better outcomes for the claimants.
A conundrum is posed by genetic information. Parents impart genes – the fundamental unit of hereditary – to their children. Consequentially, descendants from a common gene pool share a percentage of their genetic heritage, which can include deleterious genetic traits. Thus, ‘faulty’ genes can promulgate through generations of a family; though it is important to recognize genetic information is not a unitary class of information. 6 This shared heritage is significant when an individual undergoes genetic testing. A person’s results simultaneously reveal information about them and their family. For example, if a patient possesses BRCA1 gene mutation – increasing their risk of breast cancer by 50–80% – the chance of their parents, siblings and children also possessing the mutation is one in two. 7 Huntington’s disease likewise has a one in two chance of transmission and is almost 100% penetrant; 8 ALD is an X-linked disorder, also with a one in two chance of transmission. 9
The presence of a deleterious gene in a patient is therefore indicative of the prospective health of blood relations. A clinician possessing genetic information is thus aware of risks pertinent to both their patient and that patient’s family. The question is: how should this information be treated? A paradigm of confidentiality is problematic; confidentiality is traditionally premised on information being relevant only to the patient, which is categorically not true of genetic information. Confidentiality is not absolute, a breach can be justifiable if it is in the public interest, 10 but the traditional paradigm does not recognize relatives’ interests in genetic information. It is argued these deserve recognition and an appropriate way of doing so is a common law duty to disclose. 11
The High Court in ABC and Smith resisted attempts to use negligence to protect familial interests in genetic information, striking out both claims and confirming commentators’ predictions that only a ‘slim chance’ exists of English law imposing a duty to disclose. 12 This resistance is an opportunity missed. With ABC scheduled for substantive appeal in March 2017, 13 the Court of Appeal has an opportunity to accept the claimant’s application and allow full consideration of a duty to disclose at trial. The position of blood relations is an important issue with genetic testing increasingly part of mainstream healthcare and further incorporation of genomic medicine within the National Health Service (NHS) inevitable. 14 Increasingly inexpensive methods of sequencing human genomes are being continually sought, thus genetic information is becoming more accessible. 15 To provide a sense of the tumbling figures, the estimated cost of the Human Genome Project is between US$2 billion and US$3 billion; the cost of sequencing James Watson’s genome in 2007 was $1 million; 16 routine sequencing of cancer genomes has been estimated as costing US$30,000; and, in 2009, a company stated it would be capable of sequencing entire genomes for US$5000. 17 The US National Library of Medicine presently identifies the cost of genetic testing as ranging from under US$100 to in excess of US$2000. 18 In the United Kingdom, private companies offer a range of genetic test costing from £720 to £2150. 19 As testing becomes increasingly inexpensive and commonplace, the legal position of blood relations grows ever more critical.
This article will challenge the High Court’s rejection of a duty to disclose and propose how a duty to disclose genetic risks could be developed through the tort of negligence. It will argue a duty to disclose is an incremental development of pre-existing principles of negligence. It will also offer a definition of what harm is foreseeable if deleterious genetic traits are not disclosed and argue that sufficient proximity can be established between clinician and family members, drawing upon caselaw from the United Kingdom and United States. Both harm and proximity were conceded as demonstrable in ABC, while the defendant was prepared to proceed on the basis injury was reasonably foreseeable in Smith. Thus the caselaw has yet to fully analyse the elements of the Caparo 20 test in the context of genetic non-disclosure; this lacuna is critical because what harm is reasonably foreseeable and who is sufficiently proximate will shape the scope of any duty. Finally, this article will argue the policy reasons cited in ABC as to why a duty was not fair, just and reasonable 21 do not prohibit an obligation to blood relations.
A radical or incremental development?
In ABC and Smith, it was argued a duty to patients’ relatives was a significant extension of a doctor’s obligations and ‘contrary to the incremental way in which the law of negligence ought to progress’. 22 In Smith, the claimant relied on Selwood v. Durham County Council, 23 which involved non-disclosure of a risk of physical violence, but McKenna J rejected the analogy because he considered the factual matrix very different. 24 In ABC, the claimant unhelpfully relied on A v. East Kent Hospitals University NHS Foundation Trust 25 and Angela P v. St James and Seacroft University Hospital NHS Trust, 26 which both involved doctor–patient duties, not duties to non-patient third parties. These cases did not provide ‘a springboard or stepping stone to the very different duty’ the claimant was contending. 27 Both judges considered the duty an example of a giant step that Lord Toulson in Michael v. Chief Constable of South Wales Police contrasted with the proper development of negligence. 28
It is, however, possible to cast doubt on this point of view. As Lord Toulson accepted in Michael, incremental analogy is only a part of the analysis. Giant steps are not categorically excluded because it may be that an ‘earlier limitation is no longer logically or socially justifiable’. 29 However, the emphasis his Lordship places on incrementalism means inferences regarding possible giant steps in the development of negligence must be drawn cautiously. The claimant in ABC also relied on unhelpfully weak caselaw, while the analysis of Selwood in Smith was frustratingly superficial, focusing on the factual matrix.
A point overlooked in ABC is that negligence already deals with non-disclosure. These disputes occur within a doctor–patient relationship and flow from an act analogous to that alleged as negligent in genetic non-disclosure: a failure to warn of a risk of harm. The recent Supreme Court ruling in Montgomery v. Lanarkshire Health Board
30
held doctors owe a duty to disclose material risks to patients; material risks are ones which in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it.
31
But if relying on doctor–patient claims is problematic, support for the incremental nature of a duty to disclose must be drawn from elsewhere. ABC was the first UK decision on tort and genetics but negligence has been applied to disclosure in other circumstances. In the United States, a duty to disclose to non-patients in defined circumstances has developed following the seminal judgement of Tarasoff v. The Regents of the University of California. 33 Significantly, post-Tarasoff caselaw has addressed issues of tort, disclosure and genetic information. But though a duty to disclose to non-patient third parties has been developed, American tort law has not devalued confidentiality. 34 US caselaw is therefore a useful comparator, and an instructive steer, when considering how English law could recognize a duty to disclose genetic information.
Tarasoff concerned the murder of the claimant’s daughter by her ex-lover, a former psychiatric patient of the defendants. During his treatment, he had repeatedly intimated an intention to kill the victim upon release, but no attempt was made to disclose the threat he posed. The Supreme Court of California upheld a duty to warn the victim, stating that when a medical professional determined a patient presented a serious danger to another ‘he incurs an obligation to use reasonable care to protect the intended victim against such danger’. 35
A Tarasoff scenario has yet to be litigated in the United Kingdom, though analogous circumstances arose in Palmer v. Tees Health Authority. 36 The claimant’s daughter had been abducted and murdered by a former patient of the defendants, who previously confessed during therapy to having sexual feelings towards children. The patient was released as an outpatient but persistently failed to attend hospital appointments. He also resided in the same street as his victim. However, the Court of Appeal found insufficient proximity between the parties. The victim was perceived to be at no greater risk than any other child, placing her within a potentially indeterminate class of ‘at risk’ individuals. Stuart-Smith LJ suggested it was ‘at least necessary for the victim to be identifiable … to establish proximity’ since a duty could not otherwise be discharged because the defendant would not know who to warn. 37 He was, however, careful to hold back his position on identifiable victims. 38 Pill LJ thought there was force in the argument that knowledge of the victim’s identity should not determine whether a duty exists, but ‘the extent and measures necessary to discharge it’. 39 Yet if knowledge of a victim’s identity is not determinative, it must very strongly inform the fundamental question ‘who, then, in law is my neighbour?’ 40 When a defendant knows of a risk directed at a specific individual (or finite class), it follows that person(s) are closely and directly affected by non-disclosure and ought reasonably to be in the defendant’s contemplation as being so affected. 41
Palmer may be distinguished from the US decision in Tarasoff because it involved an indeterminate class, making a duty to disclose extremely difficult to discharge because the defendant would not know who to warn. Rejection of a duty on these facts, however, may not be inconsistent with American doctrine. In another US judgement, Thompson v. County of Alameda, 42 a juvenile offender was temporarily released into his mother’s custody and murdered a young boy. The offender previously told his doctors he would kill one of the children living in his neighbourhood if released, but never identified a specific victim, only geographical proximity. In a conclusion somewhat analogous to Palmer, the Supreme Court of California held a duty to warn could not be owed to an unidentifiable victim, even if it was known from what locality they would be drawn. The victim was not identifiable, and proximity was not established, by virtue of his residence in a specified location. Similarly, the victim in Palmer was not proximate merely because she resided in the same street as her killer.
Thompson and Palmer might appear at odds with an earlier American decision, Durflinger v. Artiles, 43 where a duty to warn was owed to a class of victims. But Durflinger only extended the duty to an identifiable group – in this instance, a family unit known to be at risk from the perpetrator – not a subset of the wider public (e.g. children). The distinction is pragmatic, reflecting the practicability of discharging a duty. A threat directed against an identified victim(s) means doctors can discharge their obligation by warning that person(s), whereas a threat to murder a child resident in London makes the duty potentially impossible to discharge. It is possible that if the claimant’s daughter in Palmer had herself been identified, a duty to warn may have arisen.
The suggestion an identifiable victim would have succeeded in Palmer is leant further credence by Bromley v. United Kingdom
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and K v. Secretary of State for the Home Department.
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In K, Smith J dismissed a pre-action application for disclosure under the Civil Procedure Rules, explaining the claimant could not demonstrate the defendant ‘should have been any more aware of her, as a potential victim … than any other member of the public’.
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Holland J agreed at first instance ‘the claimant could not be identified as a potential “victim” and consequently was outwith the proximity that is a key element of a duty of care situation’.
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In the Court of Appeal, Laws LJ appeared to imply that an identifiable victim might have succeeded. He explained that in cases involving third parties the law in principle looks for a ‘special relationship’ between claimant and defendant before it will find a duty of care … [Where] the damage which the claimant suffers is directly occasioned by the defendant’s acts or omissions, such a nexus will generally be taken to be present … [otherwise] the nexus will have to be found on the particular facts.
48
A duty to disclose to an identifiable victim a risk to their physical integrity potentially arose in Selwood. The case possesses some similarities to Tarasoff and was relied upon by the claimants in Smith. 53 The claimant was a social worker for the local authority, which collaborated closely with two NHS trusts to provide integrated social care and mental health services. The claimant was assigned a case concerning a young girl whose father suffered from mental health problems and had a history of violent behaviour. The father was a patient of the NHS trusts and, during treatment, told his doctors that he wished to harm the social worker involved in his daughter’s case. He later stated he would ‘kill her on the spot’ if he saw her. Despite the severity of the threat and the patient’s history of violence, neither the claimant nor her employer was apprised. When the patient was temporarily discharged from hospital, he attacked the claimant with a knife, inflicting serious injuries. The claimant sued her employer and the NHS trusts in negligence, but it was held at first instance neither trust owed her a duty of care in respect of the actions of a third party. The Court of Appeal allowed the claimant’s appeal and sent the matter to trial. Dame Smith concluded the judge at first instance had erred, explaining the ‘appellant was not one of the world at large; she was one of a small group of social workers, working in close proximity and cooperation with the second and third defendants’ own employees’. 54 The claimant’s membership of a finite group meant she occupied a ‘special position’. 55 The claimant argued she was owed a duty because she occupied a position of quasi-employment with the NHS because of collaborations with Durham Council. However, as the specific target of threats, the claimant might also be attributed the label of identifiable victim and comparisons drawn with the murder victim in Tarasoff. Dame Smith concluded it was open to a trial judge to decide whether a duty was fair, just and reasonable, noting ‘the point is arguable’. 56 Certainly a view can be formed that the NHS trusts owed a duty because the trusts (and only the trusts) were in a position to take the most effective precaution: to issue a warning to the identified victim and her employer. This is a contrast to Palmer where a warning could not be given because the victim was one of an indeterminate class. 57
Analogous caselaw can therefore be put forward suggesting a duty to disclose is an incremental as opposed to radical development. But in ABC and Smith, the High Court indicated policy considerations had previously led to a refusal ‘to impose a duty to on clinicians to identifiable third parties’. 58 The judges relied upon X v. Bedfordshire County Council 59 and D v. East Berkshire NHS Trust, 60 both involving claims for psychiatric injury by parents wrongfully suspected of child abuse. The parents’ claims failed, ‘the courts accepting the contention that clinicians should not face conflicting duties’. 61 The House of Lords in D identified that when abuse is suspected, ‘a doctor must be able to act single-mindedly in the interests of the child … [not] have at the back of his mind an awareness … he may be exposed to claims by a distressed parent’. 62 The intention was to ‘protect weaker members of society (children) from harm done to them by others’, 63 thus parents wrongly suspect of abuse were owed no duty as it conflicted with the relevant statutory social welfare scheme.
In ABC, it was noted that considerable stress was laid on the danger of creating conflicting duties, implying an analogy between the conflicts in X and D and patient confidentiality and disclosure to non-patients. But confidentiality is not absolute and doctors can be subject to conflicting duties regarding information. 64 Thus, an analogy with X and D is problematic. Furthermore, parents were only owed no duty when they were the suspected abuser, a duty has been imposed when the interests of parents and children are similar, that is, when the abuser is a third party. 65 The argument follows that where relatives share the same interest in ‘reducing the risk of developing hereditary diseases, ensuring early diagnosis, and making informed decisions’ the duties to patient and relatives are not necessarily in conflict. 66
Gilbar and Foster propose another line of judgements are ‘a better parallel to the case of ABC’ than D and X. 67 The cases concerned the legal duty on local authorities and clinicians to disclose information about foster children’s behavioural problems and histories of violence to potential foster and adoptive parents. 68 The justification for disclosure is to allow informed decision-making and allow the taking of ‘measures to avoid the risks of harm the child may create’. 69 In W & Others v. Essex County Council, 70 a 15-year-old boy placed in the claimants’ household by the defendant sexually abused his foster parents’ biological children. The parents had previously stated they would not foster any child suspected of, or known to commit, sexual abuse and the defendant provided assurances no such child would be placed with them. However, the defendant failed to disclose the boy had been cautioned for indecent assault and was being investigated on suspicion of rape. This failure meant the foster parents could not take measures to avoid risks of physical and psychiatric harm.
The local authority accepted the abused children had an arguable claim but applied to strike out the parents claim for psychiatric injury. There are two points regarding the case: first, the position of the biological children might be analogous to the US case of Durflinger, in that they were identifiable victims of the local authority’s non-disclosure. Their abuser resided with them at the defendant’s behest. Had the boy’s history been disclosed, the victims’ parents could have obviated the risk by refusing to foster the child. Furthermore, unlike Palmer, the defendant could have exercised the most effective precaution because they knew to whom to disclose. Second, the local authority and clinicians are subject to conflicting duties: the child’s confidentiality and a duty to disclose to the foster family. Here confidentiality is restricted insofar as is necessary to prevent harm to others. This logic applies to genetic information: the confidentiality of a patient yielding insofar as is appropriate to avoid or minimize harm to blood relations.
Generally ‘people may be subject to a number of duties, at least provided that they are not irreconcilable’. 71 Therefore a clinician can potentially owe a duty to a third party, providing the duty’s ‘scope is not similar to the scope of the duty the clinician owes to the patient and … does not depend on the duty the clinician owes to the patient’. 72 As Gilbar and Foster argue, ‘[t]his would seem to apply in the context of genetic medicine, where the scope of the clinician’s duty to relatives is very specific and limited’. 73
A duty to disclose genetic risks is therefore argued as an incremental development of negligence rather than a giant step. The cited caselaw suggests that parallels exist certainly to the case of ABC, if not Smith, where a central pillar of the claim was a failure to conduct a diagnostic test. The Court of Appeal was careful to withhold whether an identifiable victim would have succeeded in Palmer, but Selwood suggest persons in a special position may be owed a duty to disclose. These cases may act as a springboard for a duty comparable to that articulated in the American judgement of Safer v. Estate of Pack.
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Here the claimant discovered her father had died from retroperitoneal cancer, a condition she was undergoing treatment for. The condition was hereditary and it was contended such was known at the time the defendant was treating the claimant’s father. It was alleged the doctor was required ‘to warn those at risk so that they might have the benefits of early examination, monitoring, detection and treatment, that would provide opportunity to avoid the most baneful consequences of the condition’.
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The court concluded: We see no impediment, legal or otherwise, to recognizing a physician’s duty to warn those known to be at risk of avoidable harm from a genetically transmissible condition.
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Importantly, the paucity of litigation in the United Kingdom addressing genetic information and the family means Safer is an invaluable (if only persuasive) precedent regarding a duty to disclose genetic risks.
a duty to disclose
If a duty to disclose is an incremental development of negligence, the next question is can a duty be established using the three-part test in Caparo. Foreseeable harm was conceded in both ABC and Smith, while proximity was also conceded in ABC, but this article will examine how these aspects of duty could be argued either on appeal or at full trial. Exclusion of these criteria from the analysis in ABC and Smith was unhelpful because foreseeable harm and proximity will be instrumental in shaping the scope of any duty. What harm is foreseeable will define the scope of liability in respect of the range of possible interferences caused by non-disclosure; proximity will draw boundaries in respect of who is owed a duty of care. These concepts are influenced by policy considerations, thus it is also important to consider the arguments advanced in ABC as to why a duty was not fair, just and reasonable. It is argued here that on full analysis of the duty concept, the claimant’s application in ABC is arguable – although the intractable nature of Huntington’s is problematic – but the rejection in Smith was correct.
Foreseeable harm
Negligence is actionable upon proof of harm; it ‘completes the cause of action’. 80 The first question in establishing a new duty is what is the foreseeable harm a defendant should owe a duty against? Harm can take the form of a setback to a variety of interest, common examples in negligence including physical, psychiatric and financial. At the duty stage, foreseeability of harm is important as a threshold concept, for ‘without it there is no need to go further because no duty of care will be owed’. 81 Injury must therefore surpass a minimum threshold; Stapleton labels this minimum ‘gist damage’. 82 Recovery is not restricted to the gist damage but it forms the nub of the action. Thus physical injury may be gist damage – that is, a broken leg – but consequential financial losses and mental and emotional trauma are also compensable.
Chico 83 and Brownsword 84 have attempted to define gist damage in relation to a range of potential tort claims. Chico proposes the courts recognize autonomy as a new head of damage and this would form the gist of claims, while Brownsword advances an interest in human dignity as a basis for genetic torts. Both autonomy and dignity enjoy limited recognition in negligence, thus a cautionary approach to definitions of harm based on self-determination is necessary. A further criticism is the focus of these formulations of harm on self-determination rather than physical and psychiatric burdens of genetic disorders. If compensation were awarded when a claimant’s ability to choose is frustrated, the damages may not recognize the debilitating effects of a condition. 85 The disease eventuating is arguably more damaging than restricting the ability to exercise choice.
It is ‘well recognised that the interest which the law of negligence protects is a person’s interest in their own physical and psychiatric integrity’. 86 A duty to guard against harms to these recognized interests has a greater chance of success than one requiring a new head of damage. The question is what physical or psychiatric harm is the gist of a non-disclosure claim. The claimant in ABC argued wrongful birth, psychiatric injury and economic loss in the event her daughter had Huntington’s disease. In Smith, harm was the inability to receive earlier diagnosis and treatment. This article will not consider economic loss. In relation to wrongful birth, the authorities show the birth of a healthy child is not harm, 87 although an award can be made in recognition of the frustration of reproductive autonomy. 88 The question is whether a child with a late onset disorder could possibly fall within the scope of caselaw on the birth of unhealthy children. 89 The problem with such is children are not routinely tested for late onset disorders. Thus a claimant must show harm to herself; therefore, the assertion in ABC of psychiatric harm is crucial, although whether it is sufficient to form the gist of an action is unclear as no evidence of a recognized psychiatric disorder was submitted. In Smith, the harm was physical: the death of one brother, the baneful consequences of the ALD experienced by the other.
It has been argued a genetic condition is not harm because ‘the HCP in no way causes the condition from which the relatives might suffer’. 90 In plain terms, non-disclosure does not cause the condition; it is caused (or influenced) by the claimant’s genome. This logic initially appears compelling but it fails to address that foreseeable harm is not necessarily dependant on being caused by a defendant’s conduct. A useful analogy can be lifted from the case of SAAMCO, where Lord Hoffmann discussed the example of a mountaineer recuperating from an injury to his leg. 91 Imagine a physician negligently fails to disclose a weakness in the mountaineer’s leg and he is injured while climbing because his leg collapses. If treatment is presumed not to be negligent, it cannot be said the doctor caused the weakness in the leg, but the injury sustained as a result of that undisclosed weakness forms the crux of an action in negligence. The eventuating risk that could have been minimized by disclosure constitutes the gist damage. Substituting the weakness for a treatable genetic condition – say, breast cancer – arguably leads to the same conclusion: the doctor does not create the deleterious trait, but non-disclosure allows it to eventuate. Chester v. Afshar 92 illustrates this point.
In Chester, the claimant was exposed to a (statistically slight) risk of spinal injury in a non-negligent operation. The risk was not disclosed prior to the procedure, it eventuated, and the claimant successfully recovered for her physical injuries. The House of Lords tried to characterize the foreseeable harm against which a duty was owed as a loss of autonomy, which non-disclosure infringed. There is some merit to this rationale because the purpose of a duty to disclose is ‘to enable adult patients of sound mind to make for themselves decisions intimately affecting their own lives and bodies’. 93 But the majority might be accused of attempting to make their decision ‘more palatable’ 94 by defining harm in terms of autonomy. The reality is few claims presently succeed in the absence of physical injury. 95 When autonomy is actionable because physical or psychiatric injury occurs it is that injury, not autonomy, that is the gist of the claim.
A genetic disease can thus constitute harm, despite non-disclosure not causing the injury directly. The negligence in Chester was the failure to disclose the risk, the gist of the claim the non-consensual physical injury. Comparable with the spinal injury in Chester, genetic diseases are adverse physical outcomes. Where medically treatment is available for a disease, harm can be ‘grounded in the deterrence of outcomes injurious to physical integrity, which … [is] uncontroversially protected by the tort of negligence’. 96 Disclosure would have facilitated access to early diagnosis and treatment, allowing the claimant to avoid or mitigate the disease’s physical consequences. This was essentially the point advanced in Smith. Where the condition is intractable, as in ABC, the claimant could articulate psychiatric injury, but disclosure in the absence of therapy is problematic. 97 Furthermore, psychiatric injury from receiving bad news does not typically create liability. 98 A fear of the future argument may be appropriate where the claimant does not know whether they have passed a deleterious treat to their children, 99 but such is restrictively provided for.
It is argued here that treatable genetic diseases are the foreseeable harm against which a duty to disclose guards. It is recognized genetic information is not unitary and predictability varies between disorders, but it is not argued that courts should draw rigid distinctions between monogenic, polygenic and multifactorial conditions. 100 Harm is argued as occurring when an undisclosed, clinically actionable risk eventuates.
Further support for this interpretation can be drawn from Birch v. University College London Hospital NHS Trust, 101 where the defendants failed to disclose the risk of a stroke inherent in undergoing a catheter angiogram and the low risk alternative of a Magnetic Resonance Imaging. The patient suffered a stroke and successfully sued. Like Chester, the claim hinged on an adverse outcome; no claim would likely have arisen without physical injury. Again the gist damage was the eventuating risk, which was inherent in the angiogram, not a result of negligent conduct. The defendants did not cause the stroke, just as they would not cause a genetic disease. Non-disclosure means a claimant cannot avoid or minimize risk, the eventuation of said risk the foreseeable harm against which a duty to disclose guards.
This line of reasoning finds support in cases concerning physical injuries inflicted by third parties, where the risk of such was not disclosed. In these circumstances, the defendants do not cause the harm, but a duty arises because the injuries eventuate from an undisclosed risk. The eventuating risk is again the gist damage. The defendants in the US decision of Tarasoff negligently failed to disclose this risk posed by their patient to his ex-girlfriend. As with Birch and Chester, it was the eventuating risk that was the foreseeable harm. The patient killed the claimant’s daughter, but non-disclosure meant she could not minimize the danger. Individuals unaware of a genetic risk occupy an analogous position: harm may be ‘minimized by a timely and effective warning’. 102
The failure to warn of the risk posed by a third party was again at issue in Selwood. The defendants were not the source of the claimants’ injuries, but those injuries were the gist of the negligence action. Non-disclosure meant the claimant could not avoid or minimize the risk. Non-disclosures of physical and medical risks are distinguishable in some ways, 103 but the gist damage is consistently the eventuating risk. The adverse outcomes about which claimants could have been forewarned create an action in negligence.
In claim for non-disclosure, foreseeable harm may therefore be the eventuating physical burdens of a medically actionable genetic disease. US jurisprudence appeared to endorse this proposition in Safer. The claimant was suffering a hereditary cancer which her father had also suffered. It was alleged her father’s doctor was required ‘to warn those at risk so that they might have the benefits of early examination, monitoring, detection and treatment, that would provide opportunity to avoid the most baneful consequences of the condition’.
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The court concluded circumstances involving genetic conditions were analogous to litigation involving contagious diseases
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and duties to warn, stating: In terms of foreseeability especially, there is no essential difference between the type of genetic threat at issue here and the menace of infection, contagion or a threat of physical harm.
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Bradshaw v. Daniels 109 further supports this interpretation of harm. A clinician owed a duty to a patient’s wife to warn her of the risks of exposure to the source of her husband’s disease – Rocky Mountain spotted fever. 110 The disease was non-contagious but the doctor negligently failed to disclose his wife was at the same epidemiological risk; she later died. The doctor in Bradshaw did not cause the condition, but he was ‘in a position to know of a risk that may not be obvious to others’. 111 Reversing the appellate court’s decision, the Supreme Court of Tennessee concluded it was appropriate ‘to impose upon a physician an affirmative duty to warn identifiable third parties in the patient’s family against foreseeable risks emanating from the patient’s illness’. 112
The caselaw above demonstrates that eventuating risks can constitute foreseeable harm though the defendant may not directly cause the injury. Eventuating risks have stemmed from third parties such as patients and foster children, 113 non-negligent operations, 114 non-negligent exposure 115 and deleterious genetic traits. 116 Undisclosed risks are foreseeable harm because defendants are ‘in a position to know of a risk that may not be obvious to others’. 117 Medically actionable genetic diseases are foreseeable harm against which a duty should guard. Non-disclosure prevents claimants avoiding or minimizing the physical (and potentially psychiatric) burdens of the condition. Safer found no essential difference between genetic conditions and infection, contagion or threat of physical harm; 118 it is common to these that harm may be ‘minimized by a timely and effective warning’. 119 Disclosing a risk of genetic disease protects physical and psychiatric integrity, interests well recognized in tort.
A criticism of foreseeable harm defined as medically actionable genetic conditions is it will restrict the scope of a duty. If the courts were to accept claims for injury to autonomy, this may be advantageous in that it might not require an adverse outcome, only frustration of the ability to choose, enabling recovery in a broader range of situations. 120 If the law were to develop this way, it may indirectly promote more widespread disclosure of genetic risks. Having to ‘wait’ for a genetic condition to develop before a valid claim arises restricts the volume of potential cases. Not every genetic risk eventuates, thus blood relations could only litigate in narrow circumstances. But it is necessary to keep negligence within ‘the bounds of common sense and practicality’. 121 Autonomy enjoys limited protection in negligence, requires a new head of damage, and expansion may meet resistance because of the volume of claims it could create. Disclosures made in the absence of therapeutic response also risk causing psychiatric harm.
If the eventuating genetic disease is foreseeable harm, gist damage is grounded in physical integrity ‘an interest uncontroversially protected by the tort of negligence’. 122 Thus, a duty to disclose would be an extension of the protection for an established interest. This being the case, the claimant in ABC is unlikely to be capable of demonstrating foreseeable harm because Huntington’s disease is intractable.
Proximity
Proximity is established where claimants are ‘so closely and directly affected by my acts that I ought reasonably to have them in contemplation as being so affected’. 123 A duty is not owed to the world at large and traditionally physical closeness or pre-existing relationships have defined the scope of potential liability. Neither is present in a claim involving non-disclosure of genetic information and ‘it is plainly not sufficient’ that a doctor–patient relationship ‘exists between the defendant and [a] third party’. 124 In ABC, though proximity was not considered, it is implied the claimant was attempting to demonstrate a doctor–patient relationship based on engagement in ‘family therapy’. 125 Establishing a doctor–patient relationship has been beneficial to claimants in previous cases and, if this was the intent, reliance on A v. East Kent and Angela P make more sense. But it is problematic to suggest ‘the chances of succeeding in a claim depend on whether one can be defined as a patient’. 126 Such narrowly defines a duty; it also presumes a bright division between patients and blood relations that may not exist in this context. 127 It is therefore argued that to establish proximity a claimant should not have to prove something akin to a doctor–patient relationship but that they are an identifiable victim of non-disclosure, closely and directly affected the failure to warn and ought reasonably to be ‘in contemplation as being so affected’. 128 A requirement of an identifiable victim is logically necessary to establish proximity because claims by unidentifiable victims have already failed before the courts because a duty to warn an indefinite class is impossible to discharge. 129
The concept of an identifiable victim was first explored by the New York Court of Appeals in Palsgraf v. Long Island Railway Co. 130 The claimant was injured while waiting on the defendant’s railway platform; the station guards negligently dropped a box of fireworks on the tracks, which exploded, the resulting shockwave dislodging a set of scales at the opposite end of the platform, striking the claimant as they fell. One reason the court dismissed the action was because the claimant was not an identifiable victim of the negligent act. Cardozo J explained a claimant needs to establish ‘the act as to him had possibilities of danger so many and so apparent as to entitle him to be protected against the doing of it’. 131 The case of Tarasoff relied on foreknowledge of the victim’s identity to uphold a duty to warn. This analysis was later extended to blood relations of patients with hereditary diseases in Safer.
A comparable opinion is found in Palmer, Stuart-Smith LJ explaining ‘it is at least necessary for the victims to be identifiable … to establish proximity’. 132 This point is also implied in Bromley and K v. SoS Home Department. In the latter, Smith J observed the claimant could not establish the defendant should have been aware of her ‘as a potential victim … that any other member of the public’. 133 In cases involving foster children, those at risk of harm are identifiable and ought to be in contemplation as so affected when placing foster children. Selwood referenced the claimant’s special relationship with the defendants, alluding her known identity was relevant. The claimant in Smith relied on Selwood, but McKenna J rejected the analogy because he considered the factual matrix distinct. 134 This is a narrow interpretation of Selwood; the case is arguably an example of an identifiable victim closely and directly affected by an undisclosed risk. The claimant’s contention of quasi-employment status ostensibly influenced McKenna J, but the US case of Safer provides a riposte. Herein genetic conditions were considered analogous to infection, contagion and threats of physical harm. 135 Applying this logic, Selwood is an appropriate case for claimants to rely upon and should not have been so quickly dismissed on its factual matrix.
Knoppers argues cases like Tarasoff provided limited guidance on genetic non-disclosure. Where the undisclosed risk is of physical violence, it is the patient’s actions which harm others; in respect of genetics, ‘the patient is not putting relatives at risk by carrying the gene mutation because the relatives already have the mutation or not’. 136 Laurie rejects this interpretation, suggesting these duties are analogous because both are examples of when a defendant ‘is privy to important information through the medium of a patient which could be used to protect third parties from harm’. 137 The crucial point is that in both types of claim, the defendant is the only source of a warning other than the patient themselves.
US tort law supports Laurie’s broader interpretation. A duty has been upheld in cases involving contagious 138 and non-contagious diseases 139 and genetic conditions. In Pate v. Threlkel, 140 the claimant alleged her mother’s doctor was negligent for failing to disclose her mother’s medullary thyroid carcinoma was genetically transmissible. It was argued non-disclosure prohibited early diagnosis and preventative therapies. The Supreme Court of California rejected the claim. A clinician did not owe a duty to disclose genetically transmissible conditions to blood relations. It held requiring clinicians ‘to seek out and warn various members of a patient’s family would often be difficult or impractical and place a heavy burden upon the physician’. 141 A comparable objection was raised in ABC: it was submitted a duty would be burdensome and distract from treating patients. 142
Safer also concerned non-disclosure of a hereditary risk of cancer. Finding for the claimant, the court concluded individuals or groups at risk of genetic conditions were easily identified and substantial future harm ‘minimized by a timely and effective warning’. 143 The doctor was therefore proximate to those relations ‘known to be at risk of avoidable harm from a genetically transmissible condition’. 144
The wording ‘relations known to be at risk of genetic conditions’ strongly alludes to immediate relatives. Thus, parents, siblings and children are the obvious staring point when considering who is an identifiable victim of non-disclosure. The immediate family shares the greatest degree of genetic commonality, therefore is at higher risk of sharing genetic conditions. Focusing on the immediate family also limits the scope of the duty, restricting the class of potential claimants. On this reading, the claimants in Smith remain insufficiently proximate to their second cousin’s doctor. To distinguish claims by ‘straightforward reference to the degree of consanguinity’ may be ‘an unsophisticated approach’, 145 but making a disclosure to a patient’s extended family ‘might often be difficult or impractical and place a heavy burden upon the physician’. 146 Cascade screening will potentially facilitate transition from extended family to immediate relations where it is conducted; a problem would arise in these circumstances when someone in the family refuses testing, but in such circumstances, a defence to breach of confidence may be available, allowing clinicians to disclose information to avoid harm. 147
The court in Safer also considered the arguments in Pate concerning the burdens of a duty. 148 These were felt unpersuasive, the earlier judgement expressly distinguished. It was acknowledged ‘an overly broad and general application of the physician’s duty to warn might lead to confusion, conflict or unfairness’, but concluded a duty to disclose genetic information, a family concern, was ‘sufficiently narrow to serve the interests of justice’. 149
Safer thus provides a riposte to the concerns raised in ABC regarding the burdens of a duty. Proximity restricts claims to a narrow range of claimants, distinguishing genetic non-disclosure from claims involving an indeterminate classes of victims like Palmer. If an analogy with infection, contagion and physical threats is adopted, immediate relations will be defined as identifiable victims of non-disclosure because they are ‘known to be at risk of … harm from a genetically transmissible condition’. 150 Therefore the claimant in ABC would be sufficiently proximate to her father’s doctors, although a question remains regarding disclosure of intractable diseases. While an entire family unit may share a deleterious trait, it is the immediate relations who are at highest risk. Beyond the parent–child–sibling triad, diversification of the gene pool reduces the possibility of genes being shared. Extended family is therefore unlikely to be able to establish sufficient proximity, which was the outcome in Smith. For a duty to be justifiable, it must not be so burdensome it inhibits provision of healthcare. If those who are able to establish proximity are limited to immediate relations, the categories of claimant will be ‘sufficiently narrow to serve the interests of justice’. 151 Thus, a duty would be a justifiable burden.
Fair, just and reasonable
Foreseeable harm and proximity are two ingredients necessary to establish duty. The final requirement is to prove a duty is fair, just and reasonable. Here courts take account of policy factors for and against liability. 152 Critically, policy shapes all elements of duty, determining whether foreseeability and proximity are construed restrictively or expansively. It is therefore crucial to developing new duties. In ABC, the defendant submitted nine reasons why a duty was not fair, just and reasonable. These submissions covered five themes: confidentiality, psychiatric harm, an interest in not knowing, incremental development and the potential burden of the duty. The final two themes have already been discussed; here, attention is on the remaining three.
Confidentiality
Confidentiality is a cornerstones of doctor–patient relations. 153 Disclosing genetic information will breach confidentiality, restricting patients’ interests in informational secrecy. A breach of confidence is arguably justifiable, but concerns were raised in ABC about its effect on the trust between doctor and patient. 154 Courts have observed a lack of respect for confidentiality could discredit clinicians because ‘future patients will not come forward if doctors are going to squeal on them’. 155 But confidentiality is not absolute. Furthermore, research predicts approximately 88–94% of people would like to be contacted about preventable genetic risks, 156 and 90–96% are willing to forgo confidentiality. 157 An erosion of trust is therefore far from certain, in fact indications are that people are generally happy for their genetic information to be shared. 158
In certain circumstances, the public interest in preserving confidences can ‘be outweighed by some other countervailing public interest which favours disclosure’. 159 Disclosure is therefore justifiable if it is supported by a public interest. In ABC it was argued what was put against the public interest in confidentiality was a private interest, 160 but prevention of harm has ‘clear potential application in the context of genetics’ 161 and LCB v. United Kingdom indicates a possible application of Article 2 of European Convention on Human Rights (ECHR) in cases involving treatable risks. 162 Here the claimant was a woman diagnosed with leukaemia allegedly caused by her father’s – a former RAF serviceman – exposure to radiation during nuclear tests conducted on Christmas Island in the late 1950s. The claimant alleged the British Government was in breach of Article 2 because it failed ‘to warn her parents of the potential health risk to her by virtue of her father’s presence at the nuclear testing’. 163 The question for the European Court of Human Rights was whether the State ‘did all that could have been required of it to prevent the applicant’s life from being avoidably put at risk’. 164 It dismissed the claim because a causal link between exposure and cancer was not established. However, the judgement seemingly affirmed ‘the state could have been required to take steps to warn and advise if it had appeared likely at the time that the irradiation of the father would endanger the health of a daughter not yet conceived’. 165 LCB indicates that when a state – through the medium of a public authority – is aware a particular individual is likely at risk of harm, 166 it incurs an obligation to take appropriate steps to safeguard their right to life, providing these steps are not impossible or disproportionately burdensome. The obligation arises when it is ‘likely’ that an individual’s Article 2 rights are endangered. Thus the claimant need only be vulnerable; 167 harm does not need to be certain. This is important in respect of genetics because there is no guarantee that diseases will be shared by blood relations, only a statistical likelihood.
If the rationale from LCB is applied to genetic information, the argument forms that once a deleterious trait is identified in the patient’s genome, the NHS becomes aware of the potential risks to the health of the patient’s blood relations. The right to life is not a right to exist – a fact demonstrated by litigation concerning the withdrawal of life-sustaining treatment. 168 Instead Article 2 operates in the medical context to safeguard the right to life through the provision of an appropriate standard of healthcare. 169 Therefore, to protect the Article 2 rights of the patient’s family, the NHS may be obliged to disclose the patient’s genetic information.
Disclosure may also be in the public interest if it improves access to, and development of, genomic medicine. But a critical limitation is advancement of a public interest must not be achievable through means other than breaching confidentiality. Alternate avenues for improving genomic medicine exist in the form of Genomics England 170 (presently overseeing the 100,000 Genome Project) and the Personal Genome Project: UK, which invites ‘willing participants to publicly share their personal data for the greater good’. 171
ABC did not analyse whether disclosure is a justifiable breach of confidentiality, dismissing the claimant’s interest as private. But if preventing harm and Article 2 rights encompass clinically actionable genetic risks, infringing patients’ confidentiality is justifiable by reference to a public interest. International law certainly envisages some restrictions on patient rights. Article 26 of the European Convention of Biomedicine 172 and its additional protocol on genetic testing 173 recognize rights can be restricted ‘for the protection of public health’. Both are notably patient-centric, foregoing explicit mention of family interests; however, Article 16(4) of the protocol does acknowledge that in exceptional cases patients’ rights can be legally restricted. This may include prevention of injury to relatives, although whether such is an exceptional case is a matter of perspective. UNESCO’s Declaration on Human Genetic Data acknowledges disclosure can be made ‘for an important public interest reason’, while Article 8(2) ECHR recognizes ‘the protection of public health’ or ‘the rights and freedoms of others’ as legitimate restrictions on individual’s right to respect for privacy, providing a state can show an interference is necessary and proportionate.
General Medical Council (GMC) guidelines also recognize confidentiality is not absolute; patient information may be disclosed when non-disclosure exposes ‘others to risk of death or serious harm’. 174 But though the guidelines address genetic information, it is for clinicians to balance their duties to patients against their duties to help protect others from serious harm. 175 While the GMC acknowledge genetic information may need to be disclosed, it is ostensibly a matter of clinical judgement.
The judiciary is well positioned to balance competing interests in genetic information, a point reinforced by well-developed caselaw on confidentiality. The issue is not one the courts are unfamiliar with and, arguably, they are the appropriate body because confidentiality is rooted in common law. American caselaw indicates a balance can be struck between disclosure and confidentiality, with patient interests restricted only ‘to the extent that disclosure is essential to avert danger to others’. 176
The ‘right’ not to know
The possibility of psychiatric harm, ethical, moral or religious factors may mean some relatives would rather not know about genetic risks. An interest in not knowing is recognized in Article 10(2) of the Convention on Biomedicine and Article 16(3) of the additional protocol. A right not to know is also recognized in UNESCO’s Declaration on the Human Genome and Human Rights, 177 but declaration and convention phrase this right in terms of patient choice, sidestepping relatives’ interest in not knowing. This omission is perpetuated by the GMC’s confidentiality guidelines, which ignore ‘the possibility of relatives having an interest in not knowing’. 178 The interest may arise under Article 8 ECHR, but there is no case in point.
A right not to know is problematic; though one is clearly envisaged, it has not been sufficiently defined. The interest cannot be general, incorporating information without foreshadowing, because it ‘would expose health professionals to liability on the basis of unpredictable individual evaluations of the desirability of the disclosure’. 179 Furthermore, ‘there cannot be a coexisting interest in knowing and … not knowing’, 180 although an interest in remaining ignorant may exist where an individual has previously indicated ‘in a way readily discoverable by health professionals, that she does not want to know information about her genetic risks’. 181 An interest in not knowing may also exist when knowledge is offered but rejected.
But in the absence of an opt-out, 182 the practicability of a right not to know is questionable, because ‘in the very process of asking “Do you want to know whether you’re at risk…?” the geneticist has already made the essence of the information known’. 183 A right not to know has been characterized as inconsistent with personal autonomy, since ‘to choose meaningfully we require full information about the range of options available and … this paradigm breaks down in the context of an interest in not knowing’. 184 But the position is not clear-cut; why must choosing not to know amount to a lesser expression of autonomy than opting to receive information? Furthermore, disclosing information to an individual who did not want to know could be a breach of their right to respect for privacy. 185
To fully respect relatives’ interest in not knowing it may be necessary to presume relations do not wish to know about genetic risks. But this approach is incompatible with the proposed duty. However, the situation may not be one of a clash between irreconcilable interests. If it is accepted that some people may not want to know genetic information, disclosure would need robust justification. Thus, the treatability of conditions would continue to play an important role. The Convention on Biomedicine and declaration on Human Genetic Data opt for a middle ground, allowing restriction of the right not to know to protect public health 186 or another ‘important public interest’. 187 If these restrictions apply only insofar as necessary, the question is not about which is superior among irreconcilable interests but how to strike an effective balance. If disclosure is justified to prevent of harm or protect Article 2 rights when conditions are clinically actionable, the interest in not knowing may yield insofar as necessary to further the countervailing interest.
Furthermore, research suggests in cases of treatable disease, clinicians ‘should not be too concerned about giving information that people might not want to know because very few people have such a desire’. 188 A 2006 Australian study also concluded relatives considered it neither a breach of privacy or autonomy to receive information stating they may be genetically predisposed to cancer, even when respondents declined any further information. 189 Furthermore, disclosure by clinicians doubled uptake of genetic testing (46%) compared with when no contact was attempted (23%), or where contact was attempted indirectly via the patient (26%). Disclosure by clinicians may therefore effect response and uptake of testing, which, in turn, may increase the accessibility of preventative therapies and further public interests in preventing harm and protecting Article 2 rights.
However, 25–40% of people may not want to receive information about non-preventable conditions, 190 meaning the right not to know is an important consideration in cases of intractable conditions, like ABC. But if no treatments are available the role of a duty is unclear, since disclosure may itself be mentally harmful. In this situation, the right not to know and prevention of harm may align, meaning non-disclosure would not breach a duty if one existed.
Psychiatric harm
Disclosing genetic information to patients’ relatives can be positive, but ‘exposure to unsolicited information concerning future ill health … can result in significant mental trauma’. 191 This risk is illustrated by the abortive attempt to screen newborns for alpha1-antitrypsin deficiency (A1 AD) in Sweden between 1972 and 1974. A1 AD is a recessive disorder caused by deficient production of alpha1-antitrypsin, a protein inhibitor that protects tissue (primarily in the lungs and liver) from effects of the enzymes of ‘inflammatory cells’, which break down bacteria and host tissue. The condition typically manifests as asthma-like symptoms. In later life it can lead to emphysema, chronic obstructive pulmonary disease, degradation of lung tissue, cirrhosis and liver failure. The Swedish programme intended to identify children with A1 AD at an early stage; to provide counselling to the parents regarding their child’s condition; and to protect ‘affected children from concentrated air pollutants (mainly cigarette smoke), in the hope of preventing or postponing lung disease in adulthood’. 192
By 1974, 200,000 newborns had undergone screening, but A1 AD screening ultimately proved unsuccessful and was discontinued. Follow-up studies indicated ‘more than half of the families with affected children suffered adverse psychological consequences’. 193 The majority of parents ‘reacted negatively (usually with fear and anxiety) to the first news of the child alpha1 deficiency’, these reactions ‘were typically strong and long lasting’ and, significantly, neonatal diagnosis did not ‘have a desirable effect on … parental smoking’. 194 In fact, if anything, it increased it. 195 A follow-up conducted 5–7 years after screening found approximately 50% of mothers and 33% of fathers had made a poor emotional adjustment to their child’s condition. Mothers also ‘reported significantly poorer mental and physical health’. 196
Potential psychological reactions to genetic information range from anxiety to suicide. A study in 1999 found suicide rates among individuals genetically positive for Huntington’s disease was 10 times the US national average. 197 The Danish Council of Bioethics has also warned of ‘morbidification’: ‘the notion of “falling victim” to some inescapable “fate” uncovered by genetic examination’. 198 But these examples contrast with the success of neonatal screening for Duchenne’s muscular dystrophy in Wales, 199 suggesting psychiatric harm flows as much from how the information is communicated, and the support available, as it does the content of the information. 200
Where disclosure may cause psychiatric harm, it is potentially inconsistent with public interests in preventing harm or Article 2 rights. The risk of psychological harm must be countervailed by the benefits of disclosure. 201 Thus prevention or management must be possible, for ‘availability of a cure carries with it the certainty that disclosure can incontrovertibly avert harm … [and] this can only be seen as a good thing for the third party to whom the disclosure is made’. 202 But if treatment ‘is ineffective, painful or difficult to come by, the grounds are less firm’. 203 If disclosure is made to facilitate preparedness not treatment, ‘there is less of a guarantee that the harm in question will … be avoided’. 204 Treatment would appear essential for a duty to be fair, just and reasonable. A duty to engender preparedness is suspect because ‘it is far from clear that these ends are achievable, and indeed disclosure … might lead to additional harms’. 205
Conclusions
Genetic information is a conundrum because of its familial dimension. ABC and Smith have seen this issue adjudicated from two perspectives in court, and both claims were rejected, but neither case provides a complete analysis of the Caparo test, thus harm did not receive attention in both cases, and proximity was also eschewed in ABC. The Court of Appeal will be presented an opportunity to more completely consider duty when it hears both cases on appeal in 2017 and it is argued the matter should be sent to trial. Full consideration of a duty to relatives is essential against a backdrop of increasing accessibility of genetic information.
The High Court resisted both claims, concluding such a duty was a giant step inconsistent with incremental development of negligence, but caselaw is indicative a duty to disclose is actually an incremental development. Cases on non-disclosure of risk may form a springboard for a duty and would constitute more appropriate analogies than the doctor–patient caselaw cited in ABC. Reliance on Selwood in Smith was also deserving of greater analysis; instead the court distinguished the cases on their factual matrix.
If the proposed duty is accepted as an incremental development, claimants must then overcome the Caparo test. It is argued foreseeable harm and proximity are critical considerations when defining the scope of the duty and lack of discussion in ABC is a missed opportunity. The foreseeable harm is proposed as undisclosed, medically actionable conditions that eventuate. This constitutes an interference with physical integrity which is an interest protected by tort and US and UK caselaw on undisclosed risks indicate directly causing harm is not a prerequisite of liability. Proximity will pose a problem because there is no pre-existing relationship between clinicians and relatives. However, relying on caselaw concerning risks of infection, contagion and physical harm, claimants may be able to demonstrate they were identifiable victims of non-disclosure and should have been in the defendants’ contemplation as so affected. If identifiable victims are defined as immediate relatives, the scope of the duty and number of potential claimants will be limited, providing a rejoinder to concerns regarding an overly burdensome obligation.
Furthermore, the policy issues relied on in ABC do not prevent a duty being fair, just and reasonable. Confidentiality is not absolute; the public interest in maintaining confidences can be countervailed by another public interest, and prevention of harm and protecting Article 2 rights both have application to genetic information. Erosion of doctor–patient trust is a valid concern but research is indicative of greater than 90% of people being willing to forgo confidentiality in cases of actionable conditions. A right not to know is also reconcilable with a duty if individuals have previously indicated they do not want to receive information about their genetic risks. 206 Furthermore, research indicates a preference for disclosure in cases of medically actionable conditions, meaning reliance on a right not to know in ABC was questionable. Psychiatric harm caused by disclosure also does not prohibit a duty providing the condition is medically actionable, because treatment means disclosure can avert harm. Therapeutic interventions counterbalance potential risks of psychiatric harm; where no treatment is available, whether disclosure is beneficial is a moot point. Disclosure made to engender preparedness is suspect because it is unclear harm would be avoided.
While ABC and Smith both rejected a duty to disclose, an opportunity to send the matter to trial will come before the Court of Appeal in 2017. Smith represents a step too far in terms of duties to third parties, but it is at least arguable a duty should be owed in ABC, though the intractable nature of Huntington’s disease is problematic. Since Huntington’s is not treatable, foreseeable harm will be difficult to prove. Furthermore, the benefits of disclosure in the absence of therapeutic responses are debatable. In the event a duty is accepted, breach and causation remain moot points.
Footnotes
Acknowledgement
I would like to thank Laura Pritchard-Jones for her helpful comments on earlier drafts of this piece.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.