Potential Disclosers

Perhaps the most obvious parties to whom the responsibilities listed above apply are healthcare professionals, who care for us, observe our health and well-being, and conduct tests and diagnoses, and investigators leading health-related research studies, who gather and process new data and generate findings about us as research participants. However, as will be clear from the preceding chapters, potentially identity-significant personal bioinformation is generated in a much wider range of contexts than healthcare and primary health research. The list of actors, therefore, who hold others’ personal bioinformation or make decisions about when and how it is conveyed to its subject(s) extends, for example, to researchers making secondary use of healthcare data, or data collected for previous studies or held in biobanks. These actors may include not only researchers themselves but also those responsible for managing data resources, research ethics committees, and funders. It includes commercial actors, such as those managing DTC services that offer testing, genomic analysis or body and brain imaging, and those developing, designing, and marketing home test kits, health-tracking devices, or mobile apps which provide users with data about, for example, their diabetes risk, sleep quality, or fitness levels. It includes healthcare providers, professional bodies, and advisory committees, such as NICE, Healthcare Improvement Scotland, or the UK National Screening Committee, who are variously responsible for making decisions about, for example, which screening programmes are offered and to whom and which kinds of predictive, diagnostic, or prognostic tests or health monitoring technologies are available to patients. I also want to suggest that the responsibilities above apply beyond those acting in professional capacities. They extend to private individuals who hold personal bioinformation about another individual – for example about a shared family risk of genetic disease – who does not have direct access to it themselves. This may appear to be an implausibly wide list of parties on whom to impose, perhaps quite demanding and subtle, responsibilities for ascertaining and responding to variable and multifaceted narrative impacts. However, it is intended to provide indications of potential bearers of communication responsibilities. They will not all be subject to them or tasked with discharging them in all circumstances.

Vulnerability and Need

We all have myriad interests and needs. Many of them are strong. And other actors are not generally compelled to try to meet all of these. So we need to look further for the full extent of the ethical roots of disclosure responsibilities. In essence – why should anyone else shoulder burdens associated with development of my identity narrative, even if this pursuit matters to me? The answer to this question involves looking to three key considerations: the inherently relational, interpretative, and dialogical nature of self-constitution; the relative lack of control we have over the availability of and our exposure to many kinds of personal bioinformation; and the ways this information may complement, conflict, or compensate for the identity impacts of our lived, embodied experiences.

Because narrative self-constitution is to a great extent an epistemic and interpretive process, one we do not and cannot undertake alone, we are each potentially implicated in the identity projects of those around us. This is especially so where one party holds specific means to make those projects go better or worse – as when others hold, or are in a position to obtain, bioinformation about us that is not otherwise available to us. In these cases, we are dependent on and vulnerable to their choices about conveying it to us and also to the epistemic asymmetries that their enhanced access to information creates. By this, I mean not only – and perhaps not even chiefly – asymmetries in power that arise from, for example, clinicians, institutions, or family members knowing more about our bodies, minds, or health than we do. As described in Chapter 4, from a narrative perspective particular concerns arise from asymmetries between our own perspectives upon and understandings of the world and the understandings of others – for example mismatches in understandings of our biological biography or our health risks. These mismatches place in jeopardy the correlation between our self-characterisations and how others see us, and thus threaten the externally oriented coherence of our embodied self-narratives and the respectful and supportive recognition of our self-narratives by others. Furthermore, we are often dependent on others for their support in understanding and interpreting new information in constructive ways and, similarly, we are vulnerable to any essentialising, reductive, misleading, stigmatising, or otherwise harmful interpretations that others might apply to it. The nature of this vulnerability warrants closer inspection.

Wendy Rogers, Catriona Makenzie, and Susan Dodds have developed an influential analysis of the concept of vulnerability as it applies to bioethical debates. In accordance with the definition offered by these authors, I understand vulnerability in the present context to mean being ‘susceptible to serious harms (physical, psychological, and emotional) with respect to the meeting of one’s vital needs – harms that impair one’s ability to lead a flourishing life’.Footnote ³ Applying the taxonomy developed by Rogers and her co-authors, my claim is that as narrators and occupants of self-constituting narratives we each exist in a state of ‘dispositional’ ‘inherent vulnerability’ with respect to the inhabitability of our identities. This is a result of – in their apt description – ‘our corporeality, our neediness, our dependence on others, and our affective and social natures’ and what this entails for the ways in which we construct our self-narratives, the contexts in which we inhabit them, and the kinds of experiences that threaten their inhabitability.Footnote ⁴ This vulnerability is actualised – becomes ‘occurrent’ – in particular circumstances, for example when we are awaiting results from a diagnostic test for a serious illness. Some of us will additionally be more markedly ‘situationally’ vulnerable if, for example, we live with a mental health disorder that presents particular challenges to our ability to develop a coherent sense of who we are, or if those close to us know something about us that we do not – for example about our genetic parentage – that would sever a key thread in our self-narratives.Footnote ⁵ And even deeper kinds of ‘pathogenic vulnerability’ may hold in circumstances where our selected modes of self-characterisation, or the intersectional constellations in which we arrange these, are routinely denied recognition or respect by others, when there are no comfortable, socially available master narrative templates that fit these, or when our core threads of self-characterisations are linked to degrading or oppressive stereotypes.Footnote ⁶ I propose that the strength of our basic identity interest and the gravity of our associated vulnerabilities are sufficient to give rise to pro tanto ethical responsibilities in others – individuals and institutions – to support those who are occurrently inherently, situationally, or pathogenically vulnerable. These are responsibilities to minimise threats to the inhabitability of information subjects’ self-narratives, where they have the means to do so.

Perhaps the clearest responsibility is to refrain from actively harming information subjects by providing, or imposing, bioinformation in a way that is likely to damage the inhabitability of their identity narrative or their abilities to develop and maintain one. In some cases, the harmful impacts of particular information encounters will be hard to predict, dependent on the disclosure context and existing identity narrative of the recipient. As I shall return to discuss shortly, this indeterminacy is not in itself grounds for relieving potential disclosers of all identity-related responsibilities. Moreover, as discussed in the previous chapter, there are at least two circumstances in which narrative harm is, if not inevitable, then reasonably predictable. The first of these is the provision of information that the discloser knows to be meaningless or misleading, or at least doing so without adequate explanation of these limitations. This might include, for example, the provision of results from a commercial neuroimaging service that purports to deliver diagnoses of serious, complex psychiatric conditions using techniques that lack the necessary capabilities. The second is the provision of information that is predictably likely to be experienced as degrading, stigmatising, or oppressive in the given context – which may well coincide with false or misleading information – or doing so in a way likely to exacerbate rather than ameliorate the effects of these qualities. This kind of information could include, for example, results of forensic genetic analysis that are derived and presented in such a way as to imply an innate, familial disposition to criminal behaviour.

A Duty to Help

While the responsibility to refrain from actively harmful disclosures is relatively easy to justify, it may seem less obvious why someone would have an ethical responsibility to positively benefit someone else’s identity through provision of information. To explain the ethical basis of this further dimension I want to add a complementary lens to that based on need, vulnerability, and interdependence. The second lens is provided by Thomas Scanlon’s justification for instating a ‘Principle of Helpfulness’, which he sets out using the following example:

As it happens, Scanlon uses information provision as his example here, but – just as he intends this principle to apply beyond information transactions – I want to hold that it holds not only in instances of offering personal bioinformation, but also those of conveying it in a helpful manner, and withholding bioinformation when doing so would not amount to contemporaneous harm. Scanlon’s Principle of Helpfulness takes us beyond moral responsibilities not to harm, which are generally more easily justified, into the realm of responsibilities to those to act for the benefit of others. Moreover, it applies where another’s needs are not so urgent as to give rise to a duty to rescue but are nevertheless worthy of ethical attention and intervention. The responsibility here is one of supporting others in furthering their significant and legitimate interests. In Scanlon’s account this is not intended to include excessively demanding duties. A responsibility to help holds where the ratio of benefit to the information subject to cost to the potential discloser is relatively high. The presence of compelling countervailing reasons and ‘significant sacrifices’ could be sufficient to override this responsibility to help. I shall indicate what such countervailing considerations could look like in the case of identity-significant bioinformation shortly.Footnote ⁸ As to the nature of the benefit in the context of bioinformation disclosures, this might not be best described in Scanlon’s terminology of saving ‘time and effort’.Footnote ⁹ However, his characterisation of the benefit in terms of supporting the beneficiary’s ‘life’s project’ is strikingly apt where the benefit is one of supporting narrative authorship and narrative inhabitability.Footnote ¹⁰

Scanlon’s Principle of Helpfulness, with some additional specifications, has been used by Franklin Miller and his co-authors as grounds for researchers’ responsibilities to return health-related incidental findings to participants.Footnote ¹¹ Here, I seek to apply it beyond return of research findings. Miller and his co-authors suggest that Scanlon’s principle would be implausibly broad if, for example, it were read as requiring one to give unsolicited health-related advice to a stranger on a bus. So they seek to further specify it by proposing there must be a professional relationship between the parties and that the potential discloser has legitimate ‘privileged access to private information’ as a result of this relationship.Footnote ¹² I, however, do not want to insist that identity-related responsibilities depend on the existence of a formal professional relationship.

I submit that it is reasonable to extend the duty to help more widely because of the importance of our information-related identity interests and because of the range of parties who are in a strong position to serve or frustrate these. However, I would follow Franklin and his co-authors in limiting the duty to those actors whose position, skills, and relationship with the information subject place them in a particular kind of privileged, and indeed powerful, position. This is the position of holding, or being readily able to acquire, bioinformation that the subject would not otherwise have – and which could have significant impacts on their narrative projects – and controlling the subject’s access to it. Here, we can call again on the concept of vulnerability introduced above. Information subjects are vulnerable to the inaccessibility of particular bioinformation or to the impacts of exposure to it, and reliant on these actors, and the insights that their expertise or position affords them, to provide, withhold, or help to interpret it. In practice, the ways and extent to which particular actors are able to support others’ identity interests, the sacrifice involved in doing so, compelling reasons not to, and the presence of conflicting or coinciding responsibilities will vary with the circumstances. For these reasons, the extent of actors’ identity-based responsibilities will vary too. These kinds of countervailing considerations and reasonable limits provide sufficient checks against implausibly unbounded or onerous duties.

Although I am rejecting the existence of a professional relationship as a necessary criterion, the specific roles and skills of potential disclosers are relevant to the nature and extent of their responsibilities in several ways. These roles and skills will shape what bioinformation they hold, the nature of their relationship to the information subject, the part they play in generating and controlling the flow of the information, and the power and authority they wield. For example, those conducting medical research generate vast quantities of findings to which participants do not necessarily have access, and many of these findings will not only be health-related but also potentially identity-significant. This is even more likely to be the case where technologies such as neuroimaging or genome sequencing are used and analyses of data from hundreds or thousands of participants are involved. This kind of privileged informational control does not only depend on professional skills. For example, family members will sometimes have knowledge of their own and other family members’ susceptibility to hereditary disease through knowledge of their own status and family history.

Vulnerabilities, dependencies, and consequent responsibilities to ascertain and respond to needs are also intimately bound up with the relationship between potential discloser and recipient and to wider pre-existing responsibilities arising from these relationships. For example, healthcare professionals have a particular duty of care for their patients that, while not explicitly extending to identity protection, does encompass wider well-being. And family members, particularly parents, have special responsibilities to nurture the personal development and flourishing of close relatives, particularly their own children, by reason of their relationships with them and the accompanying moral duties to safeguard their well-being. It is not implausible to hold that for parents these duties encompasses, albeit implicitly, that of providing the tools for their children’s independent identity-development.Footnote ¹³ I would further suggest, as illustrated by all three examples discussed in Chapter 5, that we are often in a special position to anticipate the identity-related needs of family members and act as valuable interpretive partners in making personal narrative sense of the implications of newly received personal bioinformation.Footnote ¹⁴ If, as I am suggesting, ethical responsibilities to support others’ information-related identity interest are grounded in the intersection of these interests, information subjects’ vulnerability, and the principle of helpfulness, it is not difficult to see how family members’ ethical responsibilities can follow from being in this special position.

I want to follow Rogers and her co-authors in suggesting that the causal history of information subjects’ identity-related vulnerabilities also have a bearing on others’ ethical responsibilities to contribute to rectifying these. These responsibilities are likely to be greater when the potential discloser has played a role in creating these vulnerabilities, for example by providing misleading or poor-quality information that places the future coherence and sustainability of the subject’s narrative in jeopardy. This might be the case where, for example, parents have allowed their children to make misplaced assumptions about their genetic parentage. Similarly, some commentators plausibly suggest that, given the central role that state regulators of fertility treatment play in separating donor-conceived individuals from knowledge of their genetic origins, these actors bear a particular moral responsibility for facilitating access to information about donor origins.Footnote ¹⁵ In these circumstances the source of the duty perhaps goes beyond helpfulness to something closer to justice.

A related line of reasoning – this time with respect to responsibilities to support the interpretation of bioinformation – may be applied to those who invite particular reliance and trust on the part of information subjects by occupying positions of authority, or by presenting bioinformation as providing especially authoritative and objective insights into subjects’ embodied lives. As observed in Chapter 5, there appears to be a close connection between subjects’ perceptions of bioinformation’s epistemic strength and identity significance, and particular narrative harms may follow from misplaced dependence on unreliable or unsuitable findings. For those who occupy positions of presumed epistemic authority, the responsibility to convey bioinformation in a narrative-supporting fashion implies two things – a requirement to support information subjects in making sense of and understanding the limitations of any bioinformation one supplies within one’s field of expertise, and a requirement to maintain humility about the legitimacy and limits to one’s own abilities to prescribe the narrative role that the information subject ascribes to it.

Obstacles to Ascertaining

The first such challenge is that, in many cases, information subjects will be unaware that there is something to be known at all. And asking them if they would want to know means effectively revealing, or revealing enough of, precisely what could be detrimental to their identity. For example, it is likely to be difficult to enquire whether someone would find it useful to know more about their parentage or about family medical history without thereby indicating that their existing beliefs about these matters are misplaced or incomplete, thus potentially seeding narrative discord and discomfort. In some circumstances, the challenge of enquiring about ‘unknown unknowns’ may be a stubborn one. However, it is not unique to navigating identity interests. It is, for example, a notoriously thorny issue in genetic privacy debates.Footnote ²³ Indeed, recognising the possibility, nature, and ethical significance of identity interests might offer some useful insights to this long-standing puzzle. The dilemma of disclosing unknown unsought bioinformation is commonly raised where genetic findings could have clinical or practical utility for the recipient, but there is a fear that revelation might be accompanied by ‘undesirable’ personal consequences. The harm implicit in this undesirability is often of vague provenance, scale, or significance. If disclosers are in a position to recognise when these feared harms comprise narrative detriment – as they sometimes will – they will be better placed to assess the risks of disclosure and to put in place the interpretive support that could help avert or ameliorate some of the gravest narrative harms should they arise. I will return to examine what this support could look like shortly.

Sometimes, practicalities or resource constraints will preclude truly individualised, collaborative prior discussion of identity interests – for example, where information-dependent decisions, such as whether to undergo surgery, are time-critical, when it is prohibitively costly and impractical to personalise the feedback practices from a large research study, or where bioinformation is automatically delivered by wearable personal devices. In other cases, meanwhile, individualised consideration of whether to disclose may seem otiose, either because the information has overwhelming clinical value, or because its practical value is negligible and there seems to be a highly likely and serious threat of harm to identity. While remaining mindful of what has been said above about potential disclosers’ limited capacities to imagine others’ identity needs, in cases such as these, it may be necessary and desirable to institute broad identity-responsive disclosure policies.

These policies need not be wholly blunt instruments. Empirical studies of the kinds explored in Chapter 5 can provide valuable insights. Genetic counselling tools, such as the BRCA Self-Concept Scale, offer evidence-based means of identifying how different population subgroups may respond to disclosure.Footnote ²⁴ And, even if it is not possible to predict precise narrative harms or benefits, it may be possible to anticipate when identity impacts of some kind could be afoot. As described in the previous chapter, identity-significance is shaped not only by the narrative perspectives of recipients but also by a cluster of publicly discernible factors. These include the nature and scale of the consequences for information subjects’ health and bodies, and the prior meanings and identity relevance ascribed by shared social and cultural practices to the information and the biological states of affairs it reports. Similarly, it is possible to anticipate when particular kinds of information are likely to be inimical to inhabitable self-narratives because they are false, misleading, stigmatising, or otherwise restrictive of self-authorship. It will also often be possible to discern when particular situational or pathogenic vulnerabilities arising from, for example, living with stigmatising conditions or in the shadow of oppressive stereotypes might make particular kinds of bioinformation particularly valuable or identity-threatening. These various anticipatory methods might not deliver infallible insights at an individual level. However, they can help mark out territory in which attention to identity impacts is particularly warranted and where identity-supporting methods of communication are a high priority. Such disclosure policies will of course need to remain flexible and responsive to individual circumstances and emerging evidence.

Navigating Choice

I have suggested that potential disclosers should discuss with information subjects what they might wish to know. But what should be done when subjects’ wishes appear to run sharply contrary to others’ careful and thoughtful assessment of their identity interests? This dilemma arises because, as I have argued, our identity interests are located in the development and maintenance of an inhabitable self-narrative, not solely in fulfilment of the sheer choice to know or not to know. This does not mean that inhabitability and choice are unconnected. Being able to exercise choice is a key to the agential skills and self-esteem that allow us to be confident authors of our own narratives. And it is of course the case that we will often be the best judges of our own narrative needs. However, we can also be mistaken. The empirical research discussed in Chapter 5 illustrates how, for example, people’s actual and longer-term reactions to learning of disease susceptibility can differ markedly from their prior expectations. And it is possible to imagine, for example, someone fervently seeking access to individual findings from their participation in a psychiatric neuroimaging study, believing these will give them the insights they need to make significant personal and professional changes, when these findings are simply not reliable or meaningful at an individual level. Conversely, we might imagine genomic research revealing that a participant is a carrier of a serious, rare genetic disorder when they have elected not to receive individual feedback. For the purposes of these examples, let us suppose that receipt or ignorance of findings in each case respectively poses a substantial threat to the future intelligibility, comfort, and meaning of the participants’ self-narratives.Footnote ²⁵ Would the research teams be ethically justified in coercing these participants into maintaining an inhabitable and sustainable identity by denying the findings in the first example and imposing them in the second? I want to suggest that the answer here is not as obviously or invariably in the negative as might sometimes be assumed.

Let us look at some positions from which the answer would be ‘no’. Pierre Widmer argues that one has the right to ‘adopt and maintain a subjective image of oneself, which may objectively be false’.Footnote ²⁶ I would submit that talk of rights here is unhelpful. Not only does it demand that we enquire what this right is based upon – Widmer himself suggests it lies in the preservation of a ‘desirable picture’ of oneself – but it also unhelpfully collapses the matter of where our interests lie with how others should respond to them. I have argued that it is generally not in our interest to occupy a self-narrative that is unsustainable and at odds with embodied experiences and others’ understandings of us and the world, even if it is apparently a ‘desirable’ one in the sense of being currently untroubled and pleasing. However, it is also important that we respect each other’s different worldviews and individuality, which suggests a requirement to recognise and support others’ narratives and narrative choices. Might there be limits to this recognition – particularly where the coherence, sustainability, and future comfort of someone’s narrative are predictably under threat?

In discussing forms of identity harm, Adam Henschke considers the limits to our ethical obligations to recognise and respect others’ self-characterisations. He argues that, while we are not obliged to recognise vicious self-characterisations that harm others, merely ‘factually unfounded’ ones – for example, that one is a vampire – warrant recognition unless they would result in ‘fundamental identity instability’.Footnote ²⁷ Henschke’s conclusion regarding vicious other-harming self-descriptors seems sound. We would not be under a moral obligation to enable a white supremacist to ‘prove’ their solely European ancestry through genomic analysis – if this were indeed possible – and thus contribute to shoring up their racist commitments. The absence of obligation would hold even if in some sense they might be said to have some kind of thin, individualistically conceived interest in these ends. Here the contrary obligation to prevent the kinds of violence, hate speech, and significant social injustice that could arise from enabling race-based stereotypes and racist activities would outweigh any such identity interest. However, the second part of Henschke’s claim seems too strong. Not only would vampire self-characterisation, assuming someone is not in fact a vampire, clearly violate the modified embodied-reality constraint I proposed in Chapter 4 – that an individual’s self-narrative should be reasonably consistent with and intelligible in light of both others’ experiences of the world and their own experience of their embodiment. It is also likely that, as I have sought to demonstrate, non-trivial identity harms may occur which fall short of Henschke’s criterion of fundamental instability. As I have argued, self-characterisations are not discrete identifiers but interdependent threads in a multifaceted identity, and their misleading qualities or fragility have wide practical, personal, and relational repercussions. Properly recognising and, where appropriate, supporting someone’s identity development through information disclosure practices, therefore, requires not simply recognising discrete self-descriptors piecemeal but also recognising the inhabitability of the whole of who someone is as a complex intersectional constellation.

For these reasons – while stressing that each case must be considered on its own merits – I would suggest that an information subject’s choice to know, or not to know, is not an automatic trump. Rather, potential disclosers have a responsibility to interrogate what is chosen as part of a collaborative exploration of needs and to weigh the competing interests – including the subject’s interest in exercising choice and any damage to relationships and trust arising from unwanted impositions or denials – giving identity interests the serious weight they are due. This could, I want to suggest, sometimes lead to withholding desired or imposing unwanted findings. From one perspective, this might be seen as troublingly paternalistic, prioritising others’ perceptions of information subjects’ well-being over their own choices. However, from the ethical perspective set out in this chapter, it can instead be seen as an appropriate response to the vulnerability of subjects’ identities – vulnerability to the onslaught of embodied and social experience and to the significant impacts of bioinformation that could explain, radically reframe, or replace these experiences – and to our dependence on each other when it comes to navigating the world and helping us make sense of who we are.

What Does Identity-Support Entail?

Echoing the recommendations of others, including Scully and Christoph Rehmann-Sutter, for ethical communication practices in genetic counselling, I want to suggest that identity-supportive disclosure involves a respectful, but not disengaged, discursive approach, involving two interconnected activities.Footnote ²⁸ First, it entails enabling recipients to understand the empirical states of affairs conveyed by information, which Scully refers to as our basic ‘conceptualization of causality in the world’.Footnote ²⁹ And, second, it entails supporting recipients to consider what this might mean for their embodied, relational identities.

The first requirement involves explaining to the recipient what the information conveys about their past, current, or future physical and mental health, their embodied states, experiences, and capacities, and their relationships to others – not only biological relationships but also those of care, trust, and dependency. The kinds of explanation required will depend on how complex, technical, or unfamiliar the information is. It might, for example, involve discussion of the clinical validity of a test – for example, how effective it is in identifying the condition or trait in question and the meaning of complex probabilistic estimates – and its clinical utility – for example, whether it points to a particular prognosis or effective course of treatment. Just as important as explaining what bioinformation can tell the recipient is making plain what it cannot. The latter might involve, for example, explaining when techniques are not yet sufficiently mature to deliver reliable insights, whether false positive or false negative results are likely, or whether confounding factors introduce uncertainties. These provisos are familiar from widespread existing recommendations for responsible communication of health findings – for example, those produced by DTC genomics – where the ethical imperative is viewed chiefly as that of averting health threats from misdiagnosis or false reassurance.Footnote ³⁰ The imperative may be no less strong, however, where potential identity impacts are concerned and where the information concerns traits unrelated to health. Given what I have said in earlier chapters about the risks of false or misleading bioinformation – that these might not only fall short of serving useful explanatory roles in our embodied, relational narratives, but also sow incoherence and jeopardise their future resilience and sustainability – it is clear why transparency about epistemic limitations is relevant to averting not only health harms but identity ones too. Preparing recipients to appreciate bioinformation’s epistemic capacities and limitations equips them to use it in a clear-eyed way and to their best advantage in the construction of their self-narratives.

The second requirement is to equip, as far as possible, recipients to assess what the information in question might mean for their accounts of who they are and to enable them to accommodate it in, or reject it from, their ongoing narrative endeavours in as smooth a way as possible. There may not always be a sharp line between this kind of assistance and that of providing guidance about information’s empirical robustness. For example, a key aspect of identity-supportive disclosure would be diverting recipients from unwarranted reductionist or essentialising readings of bioinformation that, for example, conveys only probabilistic estimates of susceptibility to disease or dispositions to particular behavioural traits. In such cases deterministic readings might both be factually false and also risk impeding the inhabitability of the recipient’s narrative by suggesting that unwanted characteristics are unavoidably self-defining and thereby circumscribing the scope for self-authorship. Averting deterministic readings in such cases straddles factual and self-characterising interpretative support.

At a broad level, acting as an interpretive partner may involve offering ways to counter or ameliorate distressing or disempowering impacts on recipients’ defining characteristics and the frameworks within which they evaluate these. It will also involve supporting recipients in finding ways to integrate or reject information from their self-narrative in ways that preserve or restore its coherence, meaning, comfort, and sustainability. Interpretive and explanatory support should, as far as possible, be delivered as part of a process of ascertaining the recipient’s particular informational needs, offering them the opportunity to receive it, preparing them to receive it, and managing the effects of disclosure. Some examples of ways in which this might be achieved could include identifying groups of recipients particularly likely to be vulnerable to stigmatising, oppressive, and distressing impacts of encounters with particular kinds of bioinformation and seeking to challenge these by, for example, offering or helping recipients develop what Hilde Lindemann refers to as ‘good counterstories’.Footnote ³¹ These counterstories are alternative narrative templates that provide a fresh perspective on oppressive social norms and which support people to ‘resist’ and ‘uproot’ existing, limiting, or degrading ‘master narratives’ and to replace these with more intelligible, enabling, and fulfilling alternatives.Footnote ³² Recipients’ feelings of uncertainty and insecurity could be addressed by exploring practical steps they might take to ameliorate these – for example, clinical interventions, protective health behaviours, or engagement with patient groups. Timing of disclosure could also make a difference to the nature of consequences for identity – as illustrated by the markedly different reactions of those learning of donor origins early or later in life.

The experiences explored in Chapter 5 suggest that identity impacts could be substantially influenced for the better by ensuring, as far as possible, that the kinds of information provided correspond to the identity-related role it is likely to fulfil. For example, it is not uncommon for donor-conceived individuals to report that distress and disorientation following disclosure of donor conception is exacerbated by lack of further information about their donors.Footnote ³³ And someone who hopes that a printed image of a brain scan will help align their family’s perception of their mental illness with their own might benefit from counselling about how to discuss their diagnosis with those close to them.Footnote ³⁴ Information – both the ‘core’ personal bioinformation itself and supporting contextual information and explanations – should be conveyed in a clear and accessible way. This means, amongst other considerations, not overburdening recipients with unmanageable detail and not treating disclosure as a one-off event or as a defensive maximal information ‘dump’. Attention should also be paid to the medium of communication. For example, images and graphical representations of data may aid understanding. However, as they can also invite risks of unwarranted epistemic and personal reliance – as illustrated by common perceptions that neuroimages convey particularly authoritative, objective, or non-negotiable ‘truths about the self’ – such reliance may itself need to be anticipated and addressed. These are only sketches of preliminary suggestions. Empirical studies exploring differential narrative impacts would make a valuable contribution to developing more detailed, concrete guidance, and to understanding which individuals or groups might have particular or unexpected needs and vulnerabilities.

Recognising Limits

The requirement for wider interpretive support described above may seem to stray far beyond the legitimate professional roles and expertise of healthcare professionals, researchers, managers of biobanks and data repositories, or those designing and marketing DTC services and devices. While family members, genetic counsellors, and other healthcare professionals may be well-placed to provide the kinds of identity-focused interpretive support described here, many actors will be ill-equipped to do so. Indeed, doing so may be a practical impossibility in some circumstances, for example in research studies comprising thousands of participants, or where a health monitoring app has millions of users. However, to reiterate what I have said above, once an actor is in the business of handling and communicating potentially identity-significant bioinformation – whatever that business is – and in the absence of strong countervailing reasons, managing its identity impacts is not an optional extra or an inconvenience but an integral part of their ethical responsibilities. That said, the interpretive responsibilities I am proposing here need not necessarily fall solely upon or be carried out directly by the parties who generate the findings. Implementing robust referral pathways to suitable third-party sources of information and support, and opportunities to reflect upon identity impacts could in some cases be a wholly appropriate part of discharging the responsibilities described above.

It is nevertheless important to recognise reasonable limits to even well-informed and skilled disclosers’ insights into the significance of specific bioinformation to a recipient’s unique, multistranded identity narrative. Recipients, in deferring to professionals’ insights and expertise on empirical states of affairs, may be inclined to defer to them on narrative matters. This is especially so when disclosers occupy a position of power and authority – as they may well do if they are healthcare professionals, research scientists, or older family members. Thus, there remains a need for humility in the face of individual difference and willingness to listen and learn, not solely to advise and instruct. This takes us back to Scully’s valuable warnings about showing ‘respect for the ontological “otherness” of the other’ and disclosers’ responsibilities to ‘to comprehend as fully as possible the others’ worldviews, and recognize their own cognitive and imaginative limits’.Footnote ³⁵

For all of these reasons, identity-supportive communication – just like enquiries as to informational needs – should involve an interpretive partnership. In Scully’s terms, it is a ‘joint interpretive and ethical enterprise’, characterised by discussion and by listening and learning on the part of the discloser and the recipient.Footnote ³⁶ This will allow the former to support the particular narrative needs of the latter as best they can. This kind of approach resembles that used in genetic counselling. However, it implies rather more intervention on the part of the discloser than is commonly associated with genetic counselling, where the principle of ‘non-directiveness’ is widely viewed as a key aspect of best practice. There is some debate about whether non-directiveness is actually achievable or a virtue in genetic counselling.Footnote ³⁷ Rehmann-Sutter suggests that it may be neither, given that communication inevitably shapes the meaning of information and that the desired outcome is not non-direction per se but supporting people in realising their agency and leading fulfilling lives.Footnote ³⁸ What is clear, though, is that if communication practices are to enable recipients to consider what the information implies for their identities and to realise their capacities to be authors of their self-narratives, this is unlikely to mean abandoning information subjects to their own devices. Identity-supporting practices will be those in which possible narrative framings of bioinformation are offered for discussion, collaborative reflection, and rejection as well as adoption. Useful support will not be abstract or generic, but responsive to the particular circumstances, needs, and vulnerabilities of the recipient.

I do not want to go so far as to suggest that if potential disclosers cannot ensure identity-supportive communication, personal bioinformation should not be disclosed at all. This would be too strong a condition. As with all the identity-related responsibilities described here, obligations to provide interpretive support must be weighed alongside and against other legitimate ethical concerns and, where necessary, legal and reasonable practical constraints. Efforts to do so should be commensurate with the likelihood and depth of identity harms and benefits. This does not mean, however, that attending to the context and manner of disclosure is simply gold-plating or an optional extra. It is integral to taking seriously the central role of self-constitution in an engaged, fulfilling, and flourishing life. And, as noted above, it is a responsibility that holds even, or rather especially, when other priorities such as health protection prevail over identity interests in decisions about whether to disclose. In such cases, the imperative is to minimise identity harms when the disclosure of information that could be inimical to inhabitability is unavoidable.

Undoubtedly, each of the requirements described in this chapter carries significant resource implications. I do not seek to minimise these or to ignore disparities amongst the opportunities and resources available to different categories of disclosers to provide interpretive support. However, the practical, ethical, and regulatory measures taken to protect health, privacy, confidentiality, and autonomy in the governance of personal bioinformation also require time, care, and resources. The purpose of this book has been to demonstrate why interests in developing and maintaining an inhabitable identity deserve equally serious and committed attention.