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Testing the limits of the ‘joint account’ model of genetic information: a legal thought experiment
  1. Charles Foster1,
  2. Jonathan Herring2,
  3. Magnus Boyd3
  1. 1The Ethox Centre, University of Oxford, Oxford, UK
  2. 2Faculty of Law, University of Oxford, Oxford, UK
  3. 3Hill Dickinson, Solicitors, London, UK
  1. Correspondence to Dr Charles Foster, The Ethox Centre, University of Oxford, Oxford OX3 7LF, UK; Charles.Foster{at}gtc.ox.ac.uk

Abstract

We examine the likely reception in the courtroom of the ‘joint account’ model of genetic confidentiality. We conclude that the model, as modified by Gilbar and others, is workable and reflects, better than more conventional legal approaches, both the biological and psychological realities and the obligations owed under Articles 8 and 10 of the European Convention on Human Rights (ECHR).

  • Ethics
  • Genethics
  • Genetic Information
  • Law
  • Confidentiality/Privacy
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Introduction

Consider the following. There is a pair of identical twins, X and Y. Both are nationally known celebrities. In the course of medical investigations, it is discovered that X has a degenerative genetic condition that will soon result in his death. This means that Y has the same condition and the same prognosis. Y learns that X is intending to tell the media that he, X, has the condition. This will necessarily mean disclosure to the public of Y's condition and prognosis too. Y does not want this information to be disclosed. He consults lawyers, asking them to obtain an injunction restraining X from disclosing the information. X's lawyers simply respond: “The information X intends to disclose is information about himself. He can do with that information what he wishes”.

Y's lawyers, who have recently been on a bioethics course, retort: “The genetic information X wishes to disclose is not his alone. It is shared with Y. It is held in a joint account. The legal effect of that joint ownership may be that the information cannot be disclosed without the consent of both signatories to the account”.

Much autobiographical information is shared information. Autobiographies are full of details of the way that A related to B. Can B object to A telling the story of her relationship with A? The answer, in some contexts, is yes. Many celebrities have obtained ‘super-injunctions’ whose purported effect is to stop publication of their lovers’ side of the story. Where such an injunction has been granted, a lover cannot say: “My relationship with that footballer is part of my personal history. I have an absolute right to do what I like with the information about my private life”. In those cases the ‘joint account’ model has effectively been upheld. Is this any different from the case of X and Y?

The super-injunction cases are unusual. Before returning to the case of X and Y (the purpose of which is to see how the law would approach the notion of the ‘joint account’ in a genetic context), we need to look at the legal basis for restraining publication of any information.

Straightforward medical confidentiality cases are decided by determining whether the public interest in disclosure is outweighed by the public interest in non-disclosure. The balancing exercise is these days often expressed in terms of resolving the competing interests described by Article 8 of the European Convention on Human Rights (ECHR). Article 8(1) right broadly gives a right to freedom from interference with one's right to lead one's life in the way one chooses. Article 8(2) qualifies that right, saying that the 8(1) shall not be interfered with except insofar as is necessary in order to protect various societal interests. Thus, for example, it is prima facie a breach of Article 8(1) to disclose without consent the information that C is suffering from schizophrenia. But there may not be an overall breach of Article 8 if that disclosure is necessary to protect the public from the danger posed by C. This Article 8 formulation is more naturally understood as balancing private (8(1)) rights against public (8(2)) rights.

It is similar with the (embryonic) law of privacy. There one balances in one hand the individual's right (embodied in Article 8(1)) to have his privacy respected, with, on the other hand, society's interest in free speech (embodied in Article 10 of the ECHR) and any other relevant societal interests (represented by 8(2)).

Applying this to the celebrity super-injunction cases: an injunction would be granted only if it were decided that the public interest in disclosing the information (an interest articulated primarily in terms of Article 10) was outweighed by the Article 8 interest of the party seeking to prevent disclosure and/or the public interest in keeping the information private.

Since we have labelled X and Y celebrities to make the threat of publication more plausible, the analysis would be identical in their case. One can imagine various circumstances that would make it more arguable that disclosure was in the public interest. If X and Y were in public office, for instance, and the condition was one that might increasingly compromise their judgement, it could be argued very forcefully that disclosure was in the public interest. That argument would be framed both in the language of Article 8(2) and Article 10.

But the situation is more interesting if the celebrity and danger elements are missing—if X and Y are regular, ordinary citizens whose engagement with the public will be in no way compromised by their progressive condition. Suppose that a local newspaper, seeking to boost flagging sales, nonetheless wishes to disclose X's information, despite Y's objection. What happens then? Then we are in a situation that tests to the limit the law's tacit acceptance of the joint account model. And it is that situation that we address in this paper.

Confidentiality: the traditional approach

Confidentiality is a central principle in medical law and ethics. If (for instance) a medical professional undertakes some investigations, the patient is, prima facie, entitled to expect the results to be kept private. The default position is that they may be disclosed to others only with the patient's consent. There are strictly limited circumstances in which there can be disclosure without the patient's consent.1

Typically, four primary arguments are used to support this approach.2 First, the information is seen as belonging to the patient: it is about them and their body and so they have the strongest claim to it. Second, the right to respect for a private life in Article 8 of the ECHR can be seen to justify protection of highly personal information. Third, it is in the public interest to protect confidentiality because doing so will encourage people to seek medical help.3 And fourth: as a matter of professional probity, doctors should respect confidences. It is simply what decent doctors do.4 These arguments, sometimes unsatisfactorily jumbled together, have been seen as providing a robust defence of the doctrine for many decades. But in recent years their adequacy has been questioned.

Genetic information has posed the most potent challenge to the traditional approach. It is no longer uncontroversial that one person's genetic information is ‘theirs’ and that it is private to them. It can be information about a relative, and hence regarded as familial information.5 A popular way of expressing this view is that genetic information is best regarded as held in a joint account.

The joint account model

Lucassen and Parker6 suggest that some genetic information is ‘essentially familial information, drawn from a kind of joint account’. Bartha Knoppers, supporting their approach, says that: “the very nature of genetic information, as both individual and universal, now mandates its treatment as familial”.7

Lucassen explains: the joint account model argues that since genetic information is shared by more than one person, the conventional model of confidentiality should be reversed: the genetic information should be available to all ‘account holders’ (family members) unless there are good reasons to do otherwise.8

This means that a patient who asked a clinician not to disclose information to a relative would be analogous to a client who asked a bank manager not to disclose information about a joint account to fellow account holders. The patient/client would have no right to do that.

As an aside, it is worth noting that the language of ‘joint account’ used by Lucassen and Parker is liable to confuse. The standard model of a joint bank account allows each party to access and remove funds from the account without notice to the other. It is clear that this is not the model Lucassen and Parker have in mind. They argue that both parties should be able to see what funds are in the ‘account’, but they do not contend that one party can use the account (for instance, to make payments) without reference to the other.

Lucassen and Parker justify this approach on the basis of justice. They argue: Genetic information is, spontaneous mutations aside, essentially and unavoidably familial in nature. It is this feature of genetics that allows individuals to benefit from genetic testing and diagnosis. When a patient attends a genetic clinic, or discusses genetics with his or her general practitioner, a family history will be constructed, drawing on familial information about diseases and illness supplied by the patient about other family members, often without their consent. In many cases an extensive family history is needed to assess the usefulness of genetic testing. Given this, there is no obvious reason why one family member should be able to benefit and yet, at the same time, be allowed to exclude others from access to such benefits.6

The approach is also justified by the way that most geneticists work with families. They often come in contact with several generations of families and owe responsibilities to each of the members. It might also be said to be how most families regard the information—not as belonging to one member, but as familial.

Parker and Lucassen argue further that there are public benefits. The ‘personal account model’ supporting strict confidentiality means that the benefits of genetic testing are untapped. The relatives risk not gaining benefits from the information, and risk developing conditions. They may lose trust in their doctors if it becomes apparent that their clinicians knew or could easily have known that they had a high risk of developing a condition, but did not inform them.

Contrasting the joint account model and the traditional approach

It is important not to overemphasise the differences between the ‘joint account’ and traditional model. Where a genetic condition is diagnosed in a patient, and the issue arises whether or not a relative can be informed of the diagnosis, the ‘joint account’ model will permit access to the information because it is in part ‘their’ (joint) information (just as a signatory to a joint account is entitled to access to the joint account). However, it is by no means obvious that the traditional approach would not lead to the same answer. Indeed, Parker and Lucassen acknowledge that it would where the genetic condition relates to a serious illness. True, disclosure will be justified for different reasons: under the joint account model because the information is joint, and under the traditional approach because there is a sufficiently strong reason to justify a departure from the default position of non-disclosure. But the two approaches will produce significantly different results in the rare case of a genetic condition that is not sufficiently serious to justify disclosure under the traditional approach. That the practical difference between the two approaches is normally small is appreciated well when one recalls that it is very rare for people not to be willing to share genetic information with their family members.9

Weaknesses of the joint account approach

Under the joint account approach, a family member is permitted access to the joint account information, but unless they are informed that there is something they should be looking for there is no reason for them to seek to access the information. For the kind of approach that Parker and Lucassen are seeking to promote, there needs to be some kind of obligation on a doctor or patient to inform the family members that there is information that they may wish to know. Using the ‘joint account’ analogy, we need to impose an obligation on the bank manager to inform the other account holder that they should look at the account. Especially because, unlike a joint account, the relative will not regularly be checking the account as a matter of course. Lawyers have struggled to fit such an obligation within the confines of the law of tort, although there may be ways around that difficulty. The difficulties have been well summarised by Fay.10 They include the courts’ traditional disinclination to impose duties of rescue, suffocatingly tight models of the doctor–patient relationship and the difficulties raised by the doctrines of foreseeability, proximity and reasonableness. But even when one is considering the liability of a clinician for non-disclosure of information to a potentially affected relative of a patient (not our concern in this paper), there are ways round these obstacles that do not involve going outside the traditionally defined borders of tort. Fay suggests identifying the necessary foreseeable harm as “the consequences of a loss of a chance to seek medical treatment, and to restrict the duty to disclose only to the situation where an effective treatment is possible and the claimant is an identifiable victim” (by which he means a member of the nuclear family).10

For present purposes, we remain agnostic on the question of whether or not this is the right analysis, but we accept that it is a (if not the) way of accommodating joint account concerns within the existing confines of the law of tort. That accommodation, while reassuring, is not necessary for our thesis. We are concerned here with the liability in the law of confidentiality (not negligence) for disclosure of a piece of one's own (but shared) information.

We find an approach of the kind proposed by Roy Gilbar and Sivia Barnoy helpful. They rely on communitarian and feminist approaches to patient autonomy, which stress that the patient has a moral responsibility to take their relatives’ interests into account when making decisions that have implications for the relatives’ lives.9 Under such an approach there is a positive obligation on an individual to inform relatives that there is information they may wish to know about. They argue: it is the individual’s social embeddedness that nurtures his or her autonomy. Consequently, the individual has an interest in maintaining familial relationships and in living in a community with which he or she can identify. Although this perception of relational autonomy accepts that a personal interest in making informed and free decisions is the major vehicle by which patients can lead their lives as they wish, it emphasises the conviction that the patient develops his or her autonomy by engaging with those around him or her. When familial tensions over genetic information arise, this alternative approach recognises that the strict rule of confidentiality should be relaxed and provide room for the ethics of the family, which is mainly based on care, commitment, intimacy, solidarity and mutual responsibility.

They suggest that the following factors should be considered in deciding how to deal with family members in the event of a diagnosis of a hereditary disease:

  1. the availability of cures or preventive measures

  2. the severity of the disease and likelihood of onset

  3. the nature of the disorder

  4. the availability of genetic testing and its accuracy in assessing the risk

  5. the relative’s likely emotional reaction when given the information

  6. the effect any decision (to disclose or not to disclose) will have on the familial relationship and on the dynamics of the particular family

But such a model does not resolve all the ethical issues. There are questions of how and when the relatives should be informed of the news. Complexities may arise where families are dysfunctional. It may be argued that allowing the relative to decide when and how to inform the other members of the family is the best approach as they will know their individual circumstances well. Further, there is the question of the protection of the right not to know information, which two of us (CF and JH) have supported elsewhere.11

Matthew Liao has challenged the contention of Parker and Lucassen that genetic information should be regarded as quintessentially familial. He points out that some genetic conditions can occur spontaneously. He gives the example of Duchenne muscular dystrophy, where one in three cases is the result of a spontaneous mutation. Further, he contends, the reference to ‘familial information is too broad’. The extent to which a genetic condition may be passed depends on the sex of the parties and the nature of their blood relationship. Monozygotic twins, for example, clearly share genetic information in a much more intimate way than grandparents and grandchildren. The ‘joint account’ model, without many caveats, does not allow for such differences, instead grouping families together as joint account holders. Thus to rest the case for requiring sharing simply on the ‘joint account’ nature of the information may be inadequate. We need to look more broadly at the obligations to share which flow from the nexus of relationships in which the parties exist.

We suggest that the best approach is to combine the joint account model with a relational approach of the kind Gilbar and Barnoy suggest.9

The joint model in a broader context

The Lucassen and Parker model fits in with some broader themes in the literature, which we can only touch upon here.6 ,12 ,13 Their model acknowledges the growing unease with the dominant individualist discourse, which focuses on autonomy and personal rights.14 In particular, it acknowledges the importance of relationality in medical law and ethics—a notion that, in many hands, emphasises responsibilities within relationships, rather than rights.15 One of us (JH) has written that in relationships of care the traditional model of confidentiality breaks down: In the life of a caring relationship, information is commonly shared. The information about one body is information that is relevant to another body. An illness affecting one person will affect the person they are in a caring relationship with. The health of one is intimately connected to the health of another.16

This is not the place to explore all the ramifications of these arguments. We simply note that the rather limited point that Lucassen and Parker make in relation to the joint account model need not be seen as a radical departure from normal rules, but rather as a reflection of a much broader shift towards recognising competing models of understanding the self, bodies and illness.6 Indeed, insofar as their claims seem to be restricted to genetic information, they may be seen as too narrow. Life, not just DNA, is held in a joint account. And so the holders of that joint account may, depending on the context, be holders because they are linked by intimate caring relationships and/or by blood.17

Anticipating the courts’ approach to the joint account model

We will assume, however, that the courts are not yet prepared to take on a completely relational approach to the law. That may require too big a rethinking of the law.18 Nevertheless, we think there is sufficient room within the current human rights law framework for the courts to take account, in considering our opening scenario, of the relational approach we want to advance. We note that the UK General Medical Council (GMC), in its ethical guidance for clinicians, acknowledges that “[g]enetic and some other information about your patient might at the same time also be information about others the patient shares genetic or other links with”, and that while patients will normally be happy to disclose relevant information to relatives, this will not always be the case. When it is not, “disclosure might still be justified in the public interest….If a patient refuses consent to disclosure, you will need to balance your duty to make the care of your patient your first concern against your duty to help protect the other person from serious harm”.19 Certainly in the context of a tort claim based on breach of confidentiality, this would feature in argument, and may carry some weight. Breach of duty in clinical negligence claims is assessed by reference to the Bolam test:20 a clinician will not be in breach of duty if what she has done would be endorsed by a responsible body of opinion in the relevant specialty. The GMC’s guidance certainly amounts to a responsible view, and it might be argued that, if and insofar as the guidance recognises the ‘joint account’ model, that model has already been imported into the law of tort on the back of the Bolam test. The difficulty with the argument is that the GMC guidance, properly viewed, may not be medical guidance at all, but an attempt by doctors to explain what the law says. If the law were to be determined by what doctors thought the law was, there would be a dizzying and intellectually embarrassing circularity. The court should not abdicate to the doctors its responsibility to determine the law. We suggest that the guidance is simply an acknowledgment by the GMC that the issue at the heart of the joint account model (namely, intimately shared information) is medically real, pastorally important and ethically weighty. It must, we suggest, be for the court to decide how to solve the problem.

The court would need to balance the competing claims under Article 8, (protecting the right to respect for family and private life) and the rights under Article 10 (freedom of expression), bearing in mind that both explicitly provide that sufficiently strong reasons can justify their interference. The details of the legal argumentation are complex and we will not go into them here.

If there were deadlock between the competing Article 8 and 10 rights of X and Y, with no issues of proportionality to decide the matter one way or the other, what would the court do?

It would have to decide the case on the basis of the competing public interests. We have already acknowledged the public interest in protecting confidentiality. There can be and are likely to be competing public interests in the circumstances of a joint account of genetic information. For example, the dissemination of the familial information may have important implications for research. Indeed, the six factors relied on by Gilbar and Barnoy in deciding how to deal with family members in the event of a diagnosis in X of a genetic disease that might affect Y (see above) are excellent examples of the sort of deliberations that should be involved in a judicial weighing of the two competing public interests. These then provide an excellent set of criteria for determining the appropriate balance between the competing rights.

So: back to the non-celebrity identical twin with the progressive condition, in whom the local paper is unaccountably interested? Can an injunction be issued against him, on the application of his twin, preventing him from disclosing the fact of his own disease on the grounds that it would tell the world something secret about his brother?

The answer is that we don't know. Nor is there anything very substantial in the English authorities that enable prediction of the result. But, very tentatively, we suggest that the answer would be that an injunction would be granted. The court, we suggest, is likely to regard to regard the impact on Y of having their medical condition revealed as involving a breach of confidence that goes deep into their identity. They will now be regarded by others as ‘Y who has that condition’. This may have severe practical consequences, for, for instance, their employment or insurance. The interference with their right to respect for private life under Article 8 will be profound. Although there is a general interest in free speech under Article 10, it is unclear that X has a particular interest in making his condition public (as opposed to simply telling his friends). In short, in weighing up the competing rights, Y’s claim to confidentiality seems stronger.

Looking at the case through Gilbar and Barnoy's lenses: there a pressing need to restrict the disclosure—a need arising from the protection of Y’s confidentiality. There is no strong reason why X wants to disclose this material. X is free to discuss issues about his health generally so long as doing so does not reveal important about Y: the impact on his free speech is therefore limited.

Although we cannot be sure about the result, we can be fairly sure about the mood in the courtroom (initial suspicion of the joint account model, followed by gradual understanding of and cautious sympathy for the model).

Can the joint account model (or Gilbar and Barnoy's variant) work? Not only can it work, but it must and it does. We have shown in this article how, although Gilbar and Barnoy's analysis comes from a rejection of the individualist thinking associated with human rights, it can be used within human rights thinking. The jurisprudence of Article 8 (and, as in the extreme circumstances envisaged in this paper, Article 10) mandates application of the model. The model is an ethical vision of the interconnectedness that the law expresses in the language of Article 8.

References

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Footnotes

  • Contributors Each author contributed equally to this manuscript.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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