Do I have a right to access my father’s genetic account?

 Written By: Roy Gilbar, Netanya Academic College, Israel, and Charles Foster

In the recent case of ABC v St. George’s Healthcare NHS Trust and others,1 [http://www.bailii.org/ew/cases/EWHC/QB/2015/1394.html] a High Court judge decided that:

(a) where the defendants (referred to here jointly as ‘X’) knew that Y, a prisoner,  was suffering from Huntingdon’s Disease (‘HD’); and

(b) X knew that Y had refused permission to tell Y’s daughter, Z (the claimant), that he had HD (and accordingly that there was a 50% chance that Z had it (and that if Z had it there was, correspondingly, a 50% chance that the fetus she was then carrying would have HD),

X had no duty to tell Z that Y was suffering from HD. Z said that if she had known of Y’s condition, she would have had an abortion.

This case brings into sharp focus:

(a) the traditionally narrow view of the doctor-patient relationship in the English law of tort;

(b) the inconsistency between that narrow view (which pertains throughout most of the law of clinical negligence), and the apparently much wider scope of the doctor’s obligation in cases relating to consent: see, for instance, Montgomery v Lanarkshire Health Board2 – in which the main consideration governing the ambit of the duty is not what a responsible body of medical opinion would do, but the crucial importance of respecting patient autonomy.

(c) the law’s failure, or refusal, to adopt the ‘joint account’ model of genetic information.3

 We think, with respect, that the court in ABC was wrong. Each of us has set out in detail elsewhere (and not in relation to this case), our reasons.4

This was a strike-out application. This is a sort of legal thought experiment, in which it is assumed, for the sake of argument, that the facts alleged by the claimant will be proved. It was also assumed here that the claimant, Z would be able to prove the ‘proximity’ and ‘foreseeability’ elements necessary to ground a duty. X took its stand purely on the third element, contending that it would not be ‘fair, just and reasonable’ to impose a duty of the kind contended for by Z.5

There are several reasons why we say the court was wrong. Here are some of them.

(a)          Surely the relatives’ right to autonomy (i.e., to make informed decisions about their lives) and to make reproductive decisions are at least as important as the right of the patient to make decisions about the use of ‘their’ confidential information. If these rights are equal and conflicting, it is not beyond the wit of the courts to broker a solution that respects, insofar as they are mutually consistent, both the patient’s (always conditional) right to confidentiality and the relative’s right to avoid harm. Compromises like that are the main products of the Family Division and the Court of Protection. Two conflicting duties can live side by side if the boundaries are clearly defined. That definition is not easy, but it is not impossible.

It is perfectly feasible for the law to impose a duty which is not too onerous for medical professionals and which has the effect of alerting the relative to the fact that there is familial genetic information of which she is entitled to know, without deleteriously affecting the interests that are protected by the general law of clinical confidentiality. The notion of a joint account need not be frighteningly wide. A judge cautious about the joint account could simply have said that only a small number of persons are entitled to have access to the account.

(b)          We suggest, however, that on the facts of this case, Z’s rights clearly trump Y’s. One gets the same result whether one looks at the case through a traditional common law lens (in which the public interest in non-disclosure is weighed against the public interest in disclosure)6 or through the lens of the ECHR – as competing  Y and Z’s competing Article 8(1), or their individual Article 8(1) rights being balanced against the wider societal considerations in Article 8(2). The ECHR arguments were given short shrift by the court: we think they deserved better.

(c)          If the court were concerned that a decision in Z’s favour would open the floodgates dangerously wide, it would have been possible (for the time being) to restrict the duty to disclose to cases where the duty materially affected the exercise of other rights already clearly protected by the law – for instance (as in this case) the rights of women to make informed reproductive decisions and, more generally, the right to make informed choices about matters crucially affecting ones physical or psychological integrity.

(d)          We would add to the Article 8 argument advanced by Z and (over-hastily) dismissed by the court), the tentative suggestion that Article 2 may have something to contribute – since it imposes a duty on the State not only not to kill its citizens but also to take positive steps to protect their lives.

This was a bad case with which to test the law’s view of the joint account. Had it related to (e.g.) hereditary breast cancer or some other treatable disease (rather than HD, which carries an immutable death sentence), the answer might have been different.

We are nonetheless cautiously optimistic that ABC will not stand. There are several reasons:

(a)        The arguments articulated above.

(b)       The fact that these arguments are consistent with the general policy of (e.g.) the General Medical Council of encouraging disclosure of confidential information where failure to disclose will or might result in really serious harm.7 Bolam might be the vehicle on which these ethical considerations are imported into the law which determines the existence and defines the ambit of a professional duty. 8

 (c)        The fact that this decision is embarrassingly at odds with the prominence given to patients’ autonomy rights in Montgomery9 and Chester v Afshar.10 Yes, Y’s autonomy rights are affected by disclosure of his confidential information, but Z’s autonomy rights are affected even more, and her rights are more closely akin than Y’s to the interests regarded as so important in Montgomery and Chester.

 (d)       The fact that the judge’s main reason for finding that there was no duty was that it would be a novel extension of the law of tort to find that there was. The law, he noted (conventionally), creeps incrementally: it doesn’t like big leaps. Two points emerge from that. First: the incremental creep is eventually likely to engulf Y and Z’s position. And, second, the reason for incremental creep in the courts of first instance is because the existence and ambit of a duty (at least where the issue turns, as here, on the criterion of ‘fair, just and reasonable’) are essentially matters of policy. Appellate courts are likely to be far less coy about imposing the necessary duty on grounds of policy.

References

  1. [2015] EWHC 1394 (QB), per Nicol J
  2. Montgomery v Lanarkshire Health Board [2015] UKSC 11
  3. See, for instance, Parker, M., & Lucassen, A. M. (2004). Ethics in practice: Genetic information: a joint account?. BMJ: British Medical Journal, 329(7458), 165.
  4. Gilbar, R., & Barnoy, S. (2012). Disclosure of genetic information to relatives in Israel: between privacy and familial responsibility. New Genetics and Society, 31(4), 391-407. Foster, C., Herring, J., & Boyd, M. (2014). Testing the limits of the ‘joint account ‘model of genetic information: a legal thought experiment. J Med Ethics. 2015 May;41(5):379-82. doi: 10.1136/medethics-2014-102142
  5. Caparo v Dickman [1990] 2 AC 605
  6. W v Egdell [1990] 1 Ch 359
  7. Confidentiality, General Medical Council, 2009: see too Consent and Confidentiality in Genetic Practice: Guidance on Genetic Testing and Sharing Genetic Information, Joint Committee of the Royal College of Physicians, Royal College of Pathologists and the British Society for Human Genetics, 2006.
  8. Bolam v Friern Hospital Management Committee [1957] 1 WLR 582; Bolitho v City and Hackney Health Authority [1998] AC 232
  9. Ibid
  10. Chester v Afshar [2004] UKHL 41
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4 Responses to Do I have a right to access my father’s genetic account?

  • Aunt Hill says:

    I think that the right of Z’s fetus not to be born with Huntingtons (or any genetic illness, really) far outweighs any of Y’s privacy rights.

    Y was not forced to have children, so this legal consequence is not a violation of his autonomy at all.

  • Keith Tayler says:

    I am inclined to agree with your conclusions on the ABC case as described in your post. I realise that you are only giving the barest of scaffolds upon which to hang your argument, but, from your description of the case, it would seem doubtful a court could have recognised a ‘duty of care’ to the Claimant and/or adopt the ‘joint account’ model of genetic information. I am not saying a court should not take such a “giant step”, only that courts – even Appellate courts – seldom make such steps. However, this case is, as you know, somewhat more complex than you describe and as such I do not see that it would have been a giant step to recognise a duty of care.

    For me, the significant facts of the case are that (using your letters), Y shot and killed Z’s mother and was found guilty of manslaughter on grounds of diminished responsibility and sentenced to a Hospital Order under the Mental Health Act 1983 s.37 and made subject to a Restriction Order in accordance with s.41. This immediately introduces the issue of whether Y lacked capacity. This is brushed aside at para 18 with a very strange interpretation of the Mental Capacity Act. Mr Justice Nicol appears to have only read s.1(2) and s.1(4) but not s.1(3), s.1(5) and s.1(6), all of which should have been considered by X. It appears that Z’s counsel made a bit of hash of this issue, but she did raise the essential point that X did not properly consider whether Y was able to take informed decisions. (Not sure in what world this little matter could be overlooked but it appears to have collided with the court.)

    Things get even more complicated when we learn that Z had had family therapy sessions with X’s clinical team and Y. Here Mr Justice Nicol makes a completely incorrect assumption about the ’rules’ of therapy when he states:

    22. …I will assume for present purposes that [Y’s] Huntington’s Disease was a contributory factor in his mental condition which led him to shoot his wife [Z‘s mother]. It may well be that the Defendants owed the Claimant a duty of care in the way in which they carried out the family therapy. But none of this means that the Defendants were obliged to disclose to some family members information which they held under a duty of confidence to another family member. I do not accept that the claim can be characterised as badly performed family therapy rather than the omission to disclose information which the Claimant would have wanted to know.

    Without going into the detail; these sessions are up against some extraordinary inept therapy sessions, but these must count as being one of the worse examples of therapy if Y‘s HD was a contributory factor in his mental state. As a condition of therapy, X should have informed Y that his HD could not be kept confidential in therapy. Without this condition X fails in their duty to care for Y. I accept that there are many so-called therapists that might not set this condition and, as with the Bolam case, X’s counsel could no doubt find enough of them to convince a impressionable judge that it was acceptable, but that would only be to yet again repeat the ghastly injustice of Bolam.

    Given Y’s history of homicide, his mental condition, X’s failure to manage Y’s condition within the context of Mental Capacity Act, and X’s failure in their duty to care in family therapy, it seems a small step to recognise Z’s claim. I too hope that ABC will not stand. But it should fall as much because of its impact upon mental health care than the wider issue of genetic confidentiality.

    Of course I base the above on the ABC judgement which does not give much detail of X’s decisions and actions.

    • Roy Gilbar says:

      Dear Keith, the focus of this case is the doctors’ duty to warn the pregnant daughter and in this context two things were rather disappointing: First, the inability of clinicians in the UK to appreciate that confidentiality is not an absolute right and second, the inability of the judge to understand the essence of genetics. The judge simply applied the traditional tort law rules and fails to grasp the importance of disclosure when physical harm can be avoided. in your reply you refer to the patient’s overall condition, and this is, in my view, a different matter. Since, it is difficult to see a court imposes a duty on genetic patients to inform their relatives, the liability of doctors become even more important.

  • Keith Tayler says:

    Dear Roy

    I understood and agreed with your argument but, as I said, I was not surprised that the judge did not take the “giant leap”. The point I made was that it was not such a leap because X failed in their duty of care to Z (she was a “patient” of X during the family therapy). I reject your contention that the overall condition of Y (we also have to include Z) is ’a different matter’. The judge failed to properly consider these matters and seemed more interested in avoiding a giant leap by apply the traditional tort laws rules. I am somewhat worried that the detail of a complex case about the treatment of people within the mental health system can be so easily swept aside in order that we might concentrate on the really important legal issues. This approach has not, I believe, served Z’s best interest.

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