What Kind of Bioinformation?

The empirical findings to be explored in this section are those reporting people’s experiences of learning of and living with the knowledge that they were conceived using donated gametes – that is, sperm or eggs from someone other than one or both of their parents.Footnote ⁵ The personal bioinformation under scrutiny here chiefly concerns the fact of donor-conception, rather than details about the donor.Footnote ⁶ As noted in the opening chapters, donor-conceived individuals’ interests – particularly their identity-related interests – in knowing about their ‘genetic parentage’ has been a topic that has animated academic, legal, policy, and public debates in recent decades.Footnote ⁷ The view that it is in the interests of donor-conceived individuals to be told of their donor origins is now widely, if not universally, held.Footnote ⁸ Nevertheless, as observed in Chapter 2, despite the fact that UK law reflects some recognition of these interests by requiring donor identifiability, scholarly debate continues about the nature and extent of the benefits of knowing to donor-conceived individuals’ identities, whether not knowing really leads to harm, and what such harm might amount to.Footnote ⁹

Before turning to look at the experiences of those who have learned that they were conceived using donor gametes, it will be useful to expand a little on what was said in Chapter 2 about when and how donor-conceived individuals conceived in the UK are currently able to come by this knowledge. As previously mentioned, the identities of donors of gametes used in licensed treatment in the UK are required by law to be recorded and accessible to donor-conceived individuals on request once they turn eighteen.Footnote ¹⁰ However, making such a request clearly requires knowing, or suspecting, that one was donor conceived. Parents in the UK are not legally obliged to tell their children about their conception, and there is no indication of donor conception on birth certificates as required in some other jurisdictions.Footnote ¹¹ Licensed fertility clinics are, however, required by law to advise parents of the importance of telling children early in their lives and to offer parents support in doing so.Footnote ¹² This follows recommendations of many leading researchers in the field that it is in the interests of children’s psychosocial well-being and family relationships if parents begin to talk to children about their donor conception at a preschool age.Footnote ¹³ Public and professional attitudes about the benefits of openness are changing, in line with emerging evidence from social research and social trends towards investing significance in genetic heritage.Footnote ¹⁴ Nevertheless, it is ultimately left to parents to decide whether and when to tell, and while they are increasingly telling their children, the majority of parents still do not do so.Footnote ¹⁵ Not all share the view that disclosure is in their children’s interests.Footnote ¹⁶ Many parents report finding it difficult to do so.Footnote ¹⁷ And stigma associated with infertility and donor conception, as well as concerns about damaging family relationships, are cited as reasons why some families do not disclose.Footnote ¹⁸ Same-sex and single parents are more likely to tell than heterosexual couples.Footnote ¹⁹

Parents are of course not the only possible source of this information. People may find out from other family members or friends, or reach their own inferences, for example by observing differing family traits or when asked for their family medical history.Footnote ²⁰ Events such as divorce or bereavement can prompt revelations, and late and unplanned disclosures are not uncommon.Footnote ²¹ Increasingly, unsuspecting individuals are discovering they are donor-conceived accidentally through their own or close relatives’ uses of DTC genomic testing services, many of which offer the means to ascertain genetic relatedness or connect with genetic relatives.Footnote ²² Individuals with suspicions can also take matters into their own hands by using these DTC services. And the UK Donor Conceived Register provides a route for people to undergo voluntary genetic testing for the purposes of connecting with donors or donor-siblings.Footnote ²³ Once they reach eighteen, people are entitled to apply to the HFEA to find out if they are donor-conceived.Footnote ²⁴ However, for those conceived outwith licensed UK clinics, for example via private arrangements or treatment in other countries, the HFEA will not hold these records. Research and surveys indicate that most donor-conceived people do not know about their donor origins.Footnote ²⁵

Though many of the findings considered below are from studies conducted in the UK, and thus in the disclosure context outlined above, some predate 2005 changes in UK law that required donor identifiability and encouraged parental openness. And some of the studies took place in other jurisdictions with different disclosure policies, including the USA and Australia. Many of the findings are from two prominent longitudinal projects, the European Study of Assisted Reproduction Families and the UK Longitudinal Study of Assisted Reproduction Families, both led by the Centre for Family Research at the University of Cambridge.Footnote ²⁶ These studies investigate children’s psychological well-being and quality of family relationships at intervals between infancy and adolescence, offering insights into how experiences change with age. Other studies drawn on below include smaller ethnographies, some of which expressly set out to explore identity-related impacts. Rich though these findings are, they exhibit two limitations relevant to the present inquiry. First, there are inevitable practical and ethical obstacles to capturing the experiences of individuals who are unaware they are donor-conceived. Second, studies in this field often draw participants from networks that facilitate contact between donor-relatives, meaning those particularly invested in understanding their origins may be over-represented.Footnote ²⁷

Information Subjects’ Experiences

The following sections highlight findings from the empirical research literature that potentially speak to the roles played by knowledge of their conception in donor-conceived individuals’ identity narratives. In order to tease apart potentially different impacts of discovering and knowing that one is donor-conceived, I will divide these findings according to three epistemic states: those of not knowing about one’s donor origins; discovering one’s donor origins; and living with this knowledge.

Through the Lens of Narrative Self-constitution

What inferences can be drawn from these diverse and complex experiences to the possible roles that knowledge of donor conception might play in individuals’ narratives of who they are? And what light might this shed on debates about the identity-significance of this particular kind of personal bioinformation? Over the next few paragraphs, I will start to investigate these questions, before bringing them together with lessons from two further illustrative examples at the end of this chapter.

The views reported above indicate that for many donor-conceived individuals, knowledge of their conception has marked impacts on their understanding of who they are. However, they also demonstrate that these impacts are not inevitable and are not always positive. If we then look closer to examine the specific nature of these impacts, there are some signs that learning of donor-conception can instigate the acquisition or loss of particular labels – for example, where recipients come to think of themselves as ‘being donor-conceived’. However, perhaps contrary to what one might assume, reports of straightforwad (re)labelling are not prominent amongst participants’ recollections. Instead, two of the strongest themes are, first, the ways in which learning of and living with the knowledge of donor conception offers new explanatory or interpretive contexts for experiences of family life, relationships, and traits; and second, the ways that disclosure affects the relational aspects of people’s accounts of who they are.

When it comes to the second of these themes, knowledge of donor conception is widely experienced as unpicking or adding new threads to the stories that individuals tell about who they are – for example, with respect to their family heritage, who they are related to, and the qualities of their relationships to others, as well as shifting the range of supporting actors and contributing editors that feature in these stories. Altered relationships are experienced as significant in their own right – as when lost heritage is mourned – but often also play a role in making recipients identity stories more or less intelligible and comfortable to inhabit and enact – for example, by explaining difficult family relationships or by making their own past appear founded on untruths. Changing relationships, such as loss of trust in parents or subsequent contact with donor siblings, are experienced as having consequent effects upon individuals’ abilities to make sense of who they are, by removing or introducing opportunities to discuss and reconcile their feelings with significant others. This then often plays into their onward relational and dialogical construction of comfortable, coherent self-narratives in which the fact of their donor-conception may variously play a significant part, or little or no part.

These indications of the relational construction of more – or less – intelligible and comfortable self-narratives point to the wider (re)interpretive and explanatory roles that knowledge of donor conception can play. Here, we may recall the cluster of claims about the narrative importance of knowing about one’s genetic parentage introduced in Chapter 2. Several of the personal experiences cited above, particularly with respect to explanations of anomalous traits or feelings of not-belonging, lend weight to Sarah Wilson’s suggestion that information about genetic parentage is valuable when it helps with ‘alleviation of uncertainty with respect to the past’.Footnote ¹⁰⁹ However, the empirical findings indicate that this knowledge does not only fulfil retrospective interpretive roles but can also help make sense of contemporary occurrences and relationships. As Jamie Nelson says, understanding the ‘earlier chapters of our lives’ can help us ‘read well what is going on in the part occurring now’.Footnote ¹¹⁰ The empirical findings described above similarly lend some support to David Velleman’s claim that recognising similarities between ourselves and close genetic relatives can be valuable for making sense of aspects of our physical embodiment.Footnote ¹¹¹ However, here again, the experiences reported indicate a wider case can be made that it is not only acquaintance with donor relatives that can be helpful. Simply knowing about donor conception can sometimes allow individuals to locate themselves in their embodied and relational history. For example, knowledge of donor origins can be useful when it helps fill in the beginnings of recipients’ biographies as biological beings and as members of their families, thus helping them (re)conceptualise where they stand within relationships, parental decisions about family-making, and wider family narratives. The empirical literature also provides illustrations of the roles that knowledge of donor origins can play in helping individuals align their own self-narratives with those of their parents and with their families’ view of them, and to understand why these accounts have diverged. In other cases, however, these new insights may instead hinder mutual understanding and shared perspectives.

Where these explanatory, grounding, and aligning roles contribute to the internal and external coherence, comfort, and sustainability of recipients’ stories of who they are, this may equip recipients better to understand and navigate their embodied lives and relationships and to engage in continued relational self-constitution. As Nelson says, seeing how our lives connect with those of others can bring ‘depth and richness to the continuing story in which we participate’.Footnote ¹¹² However, it is equally clear that for many donor-conceived individuals – particularly those who discover after childhood – knowledge of donor conception has the opposite effect. Rather than bringing coherence or richness, it upends previously valued and relatively settled or intelligible self-conceptions, resulting in what Eric Blyth calls ‘disjunctions in [recipients’] biographies’.Footnote ¹¹³ As Frith and her co-authors observe of some of their participants, ‘the knowledge they were donor-conceived came as a complete surprise and did not fit any previous sense of biography and therefore challenged their sense of identity’.Footnote ¹¹⁴ The ‘challenge’ here may take a number of forms including loss of previously valued threads of self-characterisation, or the introduction of a ‘competing’ narrative in which central beliefs have been replaced with new, unfamiliar, or unwelcome ones.Footnote ¹¹⁵ The above recollections also indicate the particular distress that can arise from occupying a self-narrative that is at odds with others’ views of who one is – for example, family members who do not know about one’s conception. Thinking about these harms in narrative terms – as arising from disjunction and external incoherence – is consistent with indications that disclosure is less likely to cause distress when it occurs in early childhood, when individuals have the opportunity to develop identity narratives consistent with their donor origins from the start and in ways that are also in harmony with wider family narratives.Footnote ¹¹⁶

It is apparent that the disruptive impacts of late disclosure can have serious and enduring impacts, with some individuals reporting that they have been unable to reconstruct a satisfying account of who they are.Footnote ¹¹⁷ These negative consequences must be taken seriously. We cannot assume that personal bioinformation is always beneficial to our self-narratives. However, the experiences reported in the empirical literature, coupled with a narrative analysis, also offer a valuable insight into the possibility that distressing identity disruption and identity detriment are not necessarily synonymous or coextensive. Freeman, who has herself conducted research with donor-conceived individuals, cautions that ‘[a]n absence of evidence of psychological “harm” should not be equated with an absence of evidence of psychological “wrong”. Conversely, a negative outcome cannot necessarily be equated with a “wrong”.’Footnote ¹¹⁸ We could substitute ‘identity’ for ‘psychological’ here while also further characterising the nature of the wrong involved. When identity is seen as constituted by a responsive, evolving, diachronic narrative, we can understand how the possibilities for identity impacts extend beyond the bald options of preservation or destruction. We can also appreciate why it is important to distinguish between experiences of discovery and those of living with or without the information. A narrative perspective allows us to recognise that initial disruption, even of a profound and painful kind, may sometimes be resolved into – or even serve – a longer-term identity benefit in terms of narrative intelligibility and resilience. For example, this may be the case where, despite initial distress, someone comes to value the opportunity to re-evaluate and adjust their account of who they are, now equipped with fresh insights into their parents’ choices or inherited traits. Conversely, we can understand how non-disclosure could place the future comfort and coherence of someone’s self-narrative in a vulnerable position of probable, non-trivial jeopardy from late discovery, even when the prior state of ‘not knowing’ is not itself distressing.

I want to suggest that the kind of latent harm characterised in this last scenario lies in the construction of what Kirkman terms a ‘misleading identity’, based on ignorance of donor origins.Footnote ¹¹⁹ It might reasonably be objected that there are infinite facts about our lives of which we are unaware without being misled about who we are.Footnote ¹²⁰ However, in this respect, ignorance of donor conception differs – not because this knowledge is intrinsically essential to our identities but because, where it is the norm for one’s social parents also to be one’s genetic ones, and in the absence of information to the contrary, most people would assume this is true of their family.Footnote ¹²¹ In the case of donor-conceived individuals, this assumption would be, at least partly, false. And, as noted in the previous chapter, it is the risk of building one’s identity around an unrecognised false belief, rather than the omission of particular facts, that is the relevant potential source of identity harm here.Footnote ¹²² The ethical dimension of this difference comes into sharp focus when we think of our identity narratives as the interpretive frameworks on which we depend for making sense of and navigating our practical lives, frameworks that could serve us poorly if premised on falsehoods.

Before closing this exploration of reported experiences through the lens of narrativity, I want briefly to return to respond to worries that the kind of identity significance I am positing here is after all synonymous with an essentialised view of identity. My intention here is not to claim that knowledge of our genetic parentage is essential to a ‘complete’ or ‘true’ identity. As the Nuffield Council is careful to point out, when donor-conceived individuals invest knowledge of their conception with identity significance, this cannot automatically be read in geneticised terms, ‘[i]t should be understood, rather, much more broadly in terms of their own story, including their biography, background and family connections’.Footnote ¹²³ This highlights an important and subtle point – that a useful and necessary distinction can be drawn between identity-significance that tracks genetic connections and identity-significance that is reducible to genetic heritage. For example, when research participants report welcoming knowledge of their conception because it allows them to make sense of discrepancies between family traits, this does not necessarily mean that they take inherited characteristics as wholly defining who they are. Rather, it may signal that they welcome the opportunity to understand how these traits fit into a story that starts in a particular way and incorporates various kinds of relationships to and commonalities with others. They value the fresh perspective, on their lives and characteristics, provided by this knowledge and the ways in which, in Velleman’s terms, this ‘encode[s] one’s appreciation of meaning in the events of one’s life’.Footnote ¹²⁴ As Maggie Kirkman observes, in applying a narrative framing to the findings from her own empirical research, ‘[f]amily stories of birth and conception, stories of “how our family came to be”, are fundamental to the idea of narrative identity’.Footnote ¹²⁵

As to the many expressions of a desire to know ‘the truth’ – some participants might indeed mean the truth about ‘who they really are’, with all the genetic essentialism this implies. However, again, such a desire need not be intended or interpreted in this way, but rather as a wish to understand the circumstances in which their life and family relationships came to be, or the wish not be left in the dark – much less deceived – about these aspects of their biography. Interpretation of donor-conceived individuals’ experiences through the lens of narrative self-constitution can help us make sense of this significance without recourse to essentialism. We need neither assume essentialism is present in the attitudes of donor-conceived individuals nor utilise this as an explanatory tool ourselves. Before I can attempt to draw wider conclusions about the generalisability of the analysis offered here to other categories of personal bioinformation, or consider which refinements might be required to the conceptual and normative picture drawn in the previous chapter, I want to look to two further illustrative examples.

What Kind of Bioinformation?

This second illustrative example looks at findings from empirical studies reporting individuals’ expectations of and reactions to receiving results from genetic testing for susceptibility to serious, complex disorders. The two kinds of tests to be looked at here are those for variants of the Apolipoprotein E (APOE) gene associated with an elevated risk of late-onset Alzheimer’s disease and tests for genetic mutations on the BRCA1 and BRCA2 genes associated with higher risks of breast and ovarian cancers. The E4 variant of the APOE gene is believed to be a ‘robust risk factor’ for late-onset Alzheimer’s disease in some populations.Footnote ¹²⁶ The BRCA mutations are responsible for significantly elevated lifetime risk of developing hereditary forms of breast and ovarian cancer in female carriers and breast and prostate cancer in men.Footnote ¹²⁷ Both late-onset Alzheimer’s disease and breast and ovarian cancers are multifactorial disorders, meaning they are not caused by a single gene but by interactions between multiple genetic and environmental factors. They may also occur in the absence of the genetic variants in question. So a ‘positive’ result – indicating that the person tested is a carrier of the variant associated with higher susceptibility – provides an estimate of an individual’s predisposition to the disease, rather than being straightforwardly predictive.Footnote ¹²⁸ And a negative test result does not rule out risk. As in the previous example, before turning to people’s experiences, I will review the current availability of APOE and BRCA testing in the UK, bearing in mind that this sits within the wider landscape of access entitlements reviewed in Chapter 2.

There are ongoing clinical and ethical debates about the relative harms and benefits of – and thus justifications for – offering genetic testing for serious multifactorial conditions, particularly if there are no effective preventative or therapeutic options or where there are risks of overdiagnosis. These debates have traditionally focused on clinical actionability as the chief desideratum. And there are long-standing assumptions that uncertainty – for example, arising from probabilistic findings or unclear prognoses – is likely to cause psychological distress, which may be both greater and harder to justify in the absence of therapeutic options.Footnote ¹²⁹ A central aim of this project is to demonstrate that treating the ethical considerations relevant to such decisions solely in terms of a balance between clinical utility, physical harm, and psychological distress is to work with an incomplete ethical palette. This second illustrative example offers an opportunity to explore whether identity should be part of the picture when instituting genetic screening policies – not only part of subsequent approaches in genetic counselling – and also to contribute to the conceptual and ethical debates about the identity-related impacts of genetic testing introduced in Chapter 2.

In accordance with National Institute for Health and Care Excellence (NICE) guidelines, BRCA screening in the UK is offered only to adults with a family history of breast or ovarian cancer and a genetic relative who has tested positive for a BRCA mutation.Footnote ¹³⁰ These cancers are sometimes treatable, and surveillance and preventative interventions, such as prophylactic surgery, may be available to those testing positive.Footnote ¹³¹ By comparison, APOE testing has relatively low predictive strength, and there are no effective preventative measures or treatments available for Alzheimer’s disease.Footnote ¹³² Clinicians and Alzheimer’s advocacy groups, therefore, recommend against provision of APOE testing altogether.Footnote ¹³³ However, as noted in Chapter 2, tests for both APOE and BRCA mutations are available, without restriction, through DTC genomic services.Footnote ¹³⁴ Two further key routes by which someone might find out their carrier status for particular genetic variants are through individual findings from genomic research or from the status of close genetic relatives. Clinical actionability and the seriousness of the condition are likely to be key to professional and legal decisions about the requirement to communicate risk findings in each of these circumstances. So, while it is not possible to say definitively, it is somewhat more likely that someone might learn of BRCA-positive status than of APOE-related Alzheimer’s risk in research contexts or from family members. Of course those tested may share their results with family members without this being a legal obligation or on the advice of a clinician.

The views discussed below are drawn from published social science studies that used a range of methodologies to investigate the attitudes and reactions of individuals to the prospect or experience of receiving susceptibility estimates based on genetic testing. Most of these studies collected data on some combination of psychological, social, and behavioural effects. The views of APOE testing for Alzheimer’s susceptibility discussed below are chiefly drawn from the US-based REVEAL study.Footnote ¹³⁵ The phases of this large, longitudinal study discussed here comprised a series of randomised clinical trials involving asymptomatic adults with first-degree relatives with late-onset Alzheimer’s disease.Footnote ¹³⁶ The study aimed, inter alia, to investigate the psychological and behavioural effects of receiving genetics-based risk estimates for Alzheimer’s from tests conducted as part of the study and the effectiveness of different genetic counselling approaches.Footnote ¹³⁷ The findings relating to BRCA testing for susceptibility to breast and ovarian cancer discussed here come from a wider range of, often smaller, studies and from systematic reviews. All the participants were women, some with prior cancer diagnoses, who had undergone BRCA testing in clinical settings. Most of these studies did not set out to investigate identity-related effects directly. Limitations of these sources for my current purposes include over-representation amongst participants of people willing to undergo testing and a lack of socio-economic and ethnic diversity.Footnote ¹³⁸ There are also possible pitfalls in attempting to generalise from findings relating to particular tests for susceptibility to conditions with particular characteristics.Footnote ¹³⁹ The inclusion of views about both APOE and BRCA testing will go some way to mapping possible points of commonality and divergence.

Information Subjects’ Experiences

In the following sections, I bring together findings that plausibly speak to the impacts of test results on recipients’ identity narratives, dividing the findings into two parts. The first will look at the expectations and motivations of participants who have not yet received test results or are recalling their feelings prior to receipt. The second will review reactions to encounters with test results and subsequent experiences and behaviours. This division will allow reflection on the extent to which actual impacts of tests results match people’s expectations. I will return in the next chapter to consider the reasons behind divergences in people’s attitudes and reactions to different types of testing.

Through the Lens of Narrative Identity

Due to the nature of genetic disease, experiences of living through family illness and awareness or expectations of their own disease risk already feature prominently in the stories many of the above participants tell about themselves. This means that the effects of new susceptibility information on their identities are not always immediately obvious or dramatic. That is, they do not generally involve wholesale revision of narrative contents or direction, or the imposition of specific new labels or self-descriptors. However, there are clear indications of the ways in which learning of risk status serves to cast both past and anticipated future chapters of recipients’ narratives in a new interpretive light. Even when results are probabilistic and uncertain, they can help recipients make sense of their past experiences – for example, of their own illness or of caring for affected family members. And even when test results do not remove uncertainty in the ways recipients hoped they would, they often still provide recipients with impetus and assistance in thinking about how their future self-narratives might look and how they might exercise some degree of control over this. This control might involve taking steps to protect their health or their material security, preparing for health challenges to come, or rethinking their plans, priorities, and outlook.

It is clear that the impacts of test results on identity-constituting narratives are not always welcome or constructive. For some, positive test results disrupt their sense of themselves as healthy, or how they envisioned their stories would unfold. The risk of genetic disease may be experienced as threatening self-defining projects, roles, or relationships, or exacerbating uncertainty about their futures and future health. Learning they are a carrier can also change recipients’ relationships with their bodies, making them feel alien or unreliable, sometimes leading to stigmatised self-conceptions or loss of a sense of agency. However, as with knowledge of donor conception, there are also indications that we should not assume that initial distress or disruption of self-perceptions always translates into longer-term identity harms. Some recipients come to accommodate their risk status in, or exclude it from, their accounts of who they are. It is also notable that it is not possible to draw a neat correlation between the ostensibly bad news of a positive test result and negative impacts on the recipients’ sense of who they are. The value of susceptibility estimates often appears to lie in the explanatory power and sense of, albeit limited, control that they offer, the changes in outlook and priorities that they make possible, and their influence on the tone and comfort of recipients’ self-conceptions.

As the above examples indicate, the ethically significant effects of test results on people’s lives are not necessarily tied to clinical actionability or practical planning. However, it is also a mistake to think of practical undertakings as wholly separate from the business of identity development. Practical activities – for example, planning for the future security of our families – are often themselves identity-constituting, particularly where these are expressive of the values, plans, and commitments by which we characterise ourselves. Our stories of who we are constructed by what we do, not just by how we think of ourselves.

As with the discovery of donor conception, genetic susceptibility test results often affect the narrative threads comprising recipients’ relationships to and concern for others. Unwelcome or unexpected results can be sources of family tensions or bonds. And familial and social responsibilities provide motivations for seeking testing. More specifically, testing and test results appear to play important parts in constituting the particular familial or social roles that make up people’s stories of who they are. For example, being tested may be a way of enacting care and concern for relatives. And learning of shared, inherited genetic risk can affect the recipients’ feelings about their abilities to meet behavioural and moral norms associated with fulfilling the roles of a loving parent or a responsible member of an at-risk family or community. As d’Agincourt Canning observes, ‘within genetics, people might see their selves inscribed onto the lives of others’.Footnote ²²⁹

The responses cited above also hint at the role of positive risk status in engagement with self-constituting ‘biosocial’ activities – those centred on biological connections and experiences of embodied commonality with others.Footnote ²³⁰ Sahra Gibbon has noted that hereditary breast cancer and being a BRCA carrier are particularly associated with biosociality and patient activism, such as fundraising for research or seeking to increase awareness of the disease.Footnote ²³¹ BRCA activism may also intersect with other shared modes of self-definition, for example gender or ethnic identifiers. BRCA-related cancers occur with particular frequency in Ashkenazi Jewish populations.Footnote ²³² It has been suggested that being a carrier – and what this is taken to imply about a shared history of oppression and migration – may be experienced as connecting members of Ashkenazi communities and as a ‘reiteration of Jewish identity’.Footnote ²³³ It is not uncommon for BRCA campaign groups to link awareness-raising activities to shared community identity.Footnote ²³⁴

The analysis offered over the preceding paragraphs stands in contrast to the sceptical perspective that probabilistic susceptibility testing – when contrasted with strongly predictive tests for single-gene disorders – has few, if any, noteworthy impacts on individuals’ identities. This kind of view is emphatically expressed by Margaret Lock and her co-authors in their analysis of the REVEAL findings. They conclude that REVEAL participants did not experience ‘anything remotely approaching a profound personal or identity change based on the test results’Footnote ²³⁵ and that ‘little if any significant changes take place with respect to [their] sense of identity’.Footnote ²³⁶ I wish to suggest that these claims are not wholly borne out by findings relating to APOE testing, much less BRCA testing.

The studies discussed above do indeed indicate that distress – particularly of a clinically significant kind – is much less in evidence than it has long been assumed. It is also apparent that receipt of genetic risk information – whether positive or negative – does not necessarily lead recipients to make wholesale revisions to their prior beliefs about their susceptibility.Footnote ²³⁷ And while there are some examples of recipients adopting their risk status as a specific self-descriptor, there is little evidence that this is universal, or that it necessarily involves adoption of the kind of encompassing, illness-vigilant, responsibilised selfhood that Carlos Novas and Nikolas Rose have termed a ‘risk identity’.Footnote ²³⁸ So, while it is perhaps true that those tested rarely experience seismic or wholesale changes in how they describe and present themselves, I would argue that we absolutely cannot conclude from this that genetic susceptibility testing has no significant identity impacts. To do so would be to adopt too narrow a conception of identity and of the kinds of identity changes that might make a difference to our lives and well-being. One of the conclusions from the REVEAL study is that information about Alzheimer’s risk informed by APOE testing can have ‘personal value’ for those tested.Footnote ²³⁹ And a recent overview of systematic reviews of impacts of genetic susceptibility testing concludes that ‘there are enough data showing that people are influenced by such testing, even if more subtly than is detected with many general, validated measures’,Footnote ²⁴⁰ and that ‘qualitative findings clearly demonstrate that genetic and genomic testing results can change peoples’ inner lives’.Footnote ²⁴¹ My suggestion is that some of this ‘personal value’, ‘influence’, and ‘change’ – and not only to recipients’ inner lives but also to their practical, moral, and relational lives – can be understood in terms of the contribution of test results to recipients’ identity narratives. These contributions include enhancing the coherence and depth of meaning of these narratives, for example by better equipping recipients to make sense of prior experiences of family illness or to deal with the prospect of personal, relational, and health challenges, or by leading them to feel solidarity with others similarly affected. These narrative contributions do not involve wholesale revisions or adoption of brand new social identities. Rather, they exemplify precisely the kind of interpretive and selective digestion of information that is integral to the narrative-building endeavour. And when these kinds of assimilation, adjustment, and perspectival shifts change how the recipient understands themselves, interprets the world, weighs up what matters to them, and projects themselves into their own future, they are far from trivial.

A number of researchers, working both on REVEAL and BRCA-related studies, note that the personal meaning and significance of test results to recipients are shaped by their family history, existing diagnoses and illness experiences, and their familial roles.Footnote ²⁴² These observations highlight the ways in which identity development is neither linear nor monadic. It involves the weaving and reweaving of multiple threads – some of which are contributed by existing experiences and characteristics, and others of which are contributed by externally sourced information about our bodies. The reconciliation and mutual interpretation of these threads are no less important to the business of identity construction, and our interests in being able to develop and inhabit the identities we construct, than dramatic reinvention.

It should be clear that the picture of the identity significance of genetic test results offered here in no way rests upon the premise that our genetic inheritance defines who we ‘really’ are. As with knowledge of donor conception, we might wonder, however, whether any identity significance invested by recipients themselves depends on their holding geneticised beliefs about what constitutes their identities. Commentators are divided on the extent to which essentialist attitudes are evident in research participants’ responses.Footnote ²⁴³ Discussing BRCA testing, d’Agincourt-Canning suggests that many people’s views sit somewhere between belief in the unassailable authority of genetic tests and a more ‘pragmatic’ perspective that recognises the limitations of these tests but also sees them as their best hope for taking control of their epistemic insecurity in the face of risk.Footnote ²⁴⁴ The experiences discussed above reflect this mixed picture. Some degree of deterministic thinking may be signalled by participants who report feeling doomed or like ‘mutants’. However, many reject determinism – for example, by refusing to be defined by their risk or by embracing measures to take some control of their health and futures. This signals that biologically essentialist assumptions are neither prerequisite for nor a necessary consequence of experiencing test results as having identity-significance. I will return in the next chapter to consider the kinds of factors that do affect differential attributions of identity-significance. Before doing so, I will turn to my third and final illustrative example.

What Kind of Bioinformation?

With this third and final illustrative example, I move beyond genetic information to look at research participants’ actual and anticipated reactions to findings derived from neuroimaging data about functional and structural features of their brains. These are findings that purport to provide insights into information subjects’ mental health status. The kinds of mental health status in question here include probabilistic future risk of developing conditions such as major depressive disorder (MDD), bipolar disorder, psychosis, and schizophrenia, diagnosis of these conditions, and likely responsiveness to particular treatments or interventions.

The attitudes and experiences explored below relate chiefly to uses, or prospective uses, of data about regions of metabolic activity in the brain – treated as a proxy for brain function – obtained from functional magnetic resonance imaging (fMRI) or, in some cases, positron emission tomography or single-photon emission computed tomography. Some of the studies also relate to uses of MRI to examine subjects’ brain structures. The following discussion will refer to findings generated ‘from neuroimaging’. However, in many cases, conclusions drawn about individuals’ mental health status will be the product of algorithmic analyses of their neuroimaging data in combination with other data gathered from them – for example, about family disease history – and compared with data collected from large groups of research participants with and without mental health diagnoses.Footnote ²⁴⁵

At the time of writing, neuroimaging is only used for limited purposes in clinical psychiatric and mental healthcare, chiefly to identify targets for surgery and to rule out structural anomalies as causes of psychiatric symptoms.Footnote ²⁴⁶ These uses are not my focus here. Instead, I will examine attitudes to predictive, diagnostic, or prognostic applications that are currently chiefly restricted to research contexts, research that is often aimed at clinical translation.Footnote ²⁴⁷ There is enthusiasm in some quarters about the prospects of this field of inquiry delivering ways of identifying pre-symptomatic risk, more precise and robust diagnoses than those that currently rely substantially on clinicians’ judgements, and better targeted treatments.Footnote ²⁴⁸ However, there is also widespread scepticism about the value of neuroimaging-based techniques over existing practices for three key reasons.Footnote ²⁴⁹ First, at the time of writing, several aspects of the methodologies used – particularly in fMRI studies – are insufficiently standardised or well-developed to deliver reliable and sensitive results at an individual patient level.Footnote ²⁵⁰ Second, the equipment, expertise, and resources needed to conduct fMRI scanning in routine clinical practice are currently prohibitive.Footnote ²⁵¹ These two practical limitations may be resoluble as methods and technologies develop.Footnote ²⁵² However, a third, concern arises from more fundamental disagreement about the validity of biological models of mental illness and may not be so readily overcome. It is not necessary to adopt a wholly anti-biological view of mental illness to recognise that neural biomarkers are rarely unique to or neatly aligned with existing psychiatric diagnostic categories, or to be concerned that neurobiological methodologies may lead to embodied, social, or environmental causes of and therapies for mental illness being sidelined.Footnote ²⁵³ For these reasons, there remains doubt about whether neuroimaging could ever provide suitable predictive, diagnostic, or prognostic methods in mental healthcare.Footnote ²⁵⁴ Despite these limitations, there are two reasons for selecting this as my third illustrative example. First, I want to take steps to make sure that any conclusions I draw are not only applicable to genetic information. Second, brain data represent a category of bioinformation about which questions of identity significance seem likely to become more ubiquitous and pressing as neuroscience and data-driven healthcare advance.

As with the previous examples, it will be helpful to review the current availability of this kind of bioinformation to information subjects. For the reasons given above, patients are currently very unlikely to receive diagnostic or prognostic neuroimaging-based findings in mental healthcare. And because of the questionable reliability of individual research findings, it also remains unlikely that participants would receive findings about their mental health as part of the feedback policies of research studies.Footnote ²⁵⁵ If patients or participants were to receive such findings, these would not necessarily take the form of literal brain images. They would perhaps be more likely to receive verbal advice about diagnoses, percentage risk estimates of susceptibility to a particular illness, or guidance on more effective treatment regimes. It is not, however, impossible that they could receive images. In one ethnographic study, discussed further below, psychiatric patients were given structural MRI scan images of their brains, as hard copies or digital files, by investigators as an ‘enticement’ or ‘thank you’ for taking part in neurological research.Footnote ²⁵⁶ This was despite the neurologists describing these images as ‘mere window dressing’, displaying no visible markers of the participant’s illness, when discussing them with the researcher.Footnote ²⁵⁷ At present, the most likely – though still not widespread – source of purported mental health ‘diagnoses’ using neuroimaging are probably DTC imaging services and consumer devices that are marketed with the promise of allowing users to monitor their own states of, for example, focus, anxiety, or relaxation.Footnote ²⁵⁸ Concerns noted above about methodological reliability are magnified considerably in the context of DTC neuroimaging.Footnote ²⁵⁹

The following discussion draws on findings from the empirical literature that provide insights into information subjects’ attitudes to receiving various kinds of neuroimaging-based information relating to their mental health. As with the previous two examples, these studies broadly investigate psychosocial effects, though several set out explicitly to explore potential identity impacts in some form.Footnote ²⁶⁰ Unsurprising, given the current state of the art, there are very few studies involving participants who have actually received neuroimaging-based mental health information. The majority of those discussed below report instead how participants – many with existing mental health diagnoses, some without – anticipate how they would react to hypothetical receipt of neuroimaging findings. Some of the studies report clinicians’, researchers’, and parents’ views about how patients would be likely to react. The few exceptions to these hypothetical enquiries are those that report of experiences of those who have used DTC imaging servicesFootnote ²⁶¹ or who have received neuroimaging findings through participating in research.Footnote ²⁶² This means that the limitations to note with respect to these findings include the caveat that attitudes and expectations reported are often speculative or based on third-person assumptions and they are usually predicated on the hypothetical counterfactual that neuroimaging would deliver robust and reliable mental health insights.Footnote ²⁶³ In addition to this many of the studies are relatively small, with several comprising part of interconnected projects with overlapping groups of participants.

Information Subjects’ Experiences

Perhaps the most immediately striking indication from the studies looked at here is that the majority of participants are enthusiastic – sometimes cautiously, sometimes more fulsomely – about what neuroimaging results could offer in terms of their own treatment, care, self-perceptions, and wider lives. For example, in one survey of the general public – none of whom had psychiatric diagnoses – the vast majority said they would be prepared to have a brain scan if it could safely and reliably predict an illness such as depression or schizophrenia.Footnote ²⁶⁴ Amenability to predictive scanning extends also to those with known diagnoses or risk factors.Footnote ²⁶⁵ Not all patients or members of the public have such positive expectations or experiences, though, as described further below.

One of the reasons many participants with existing psychiatric diagnoses give for their enthusiasm is that they see neuroimaging as potentially providing authoritative and reliable insights into the nature or cause of their mental illness – implicitly more dependable than subjective clinical judgements of mental health professionals. Participants in several studies said that neuroimaging-based assessment would provide, or had provided them with a more ‘clear and objective’, ‘certain’, or ‘concrete’ diagnosis.Footnote ²⁶⁶ Another study found that the majority of participants believed neuroimaging results would help them accept their condition and understand its biology.Footnote ²⁶⁷

Several studies note beliefs amongst patients and healthcare professionals that – because of their perceived objectivity and authority – neuroimaging-based diagnoses would deliver therapeutic benefits by encouraging improved access to, uptake of, or compliance with health-protective behaviours and treatment.Footnote ²⁶⁸ However, in counterpoint to these hopes, some clinicians and commentators voiced concerns that biologised, brain-based explanations of mental illness might encourage patients to be pessimistic about treatment or recovery or to rely more heavily on psychopharmaceuticals to the exclusion of other therapeutic strategies.Footnote ²⁶⁹ While some patients expressed concerns that neuroimaging-based diagnoses could increase their worry about their illness, for the most part, professionals’ concerns about fatalism or ‘prognostic pessimism’ are not borne out by patients’ own responses.Footnote ²⁷⁰ Indeed, the majority of participants in one study – who had diagnoses of MDD – reported that a neuroimaging-based diagnosis would make them more likely to undertake psychotherapy.Footnote ²⁷¹ Participants with schizophrenia in another study welcomed the prospect of neuroimaging if it could help tailor individual treatment more effectively.Footnote ²⁷² And amongst a group who had used commercial neuroimaging services, most said they felt more positive and in control of their health, with only a few reporting decreased hope.Footnote ²⁷³

Another common reason given by those with existing diagnoses for welcoming neuroimaging-based diagnoses is that these could help explain or legitimise their experiences of mental illness.Footnote ²⁷⁴ For example, Daniel Buchman and colleagues describe one participant’s hope that neuroimaging will offer a way to ‘reconfigure the meaning of his experience [of illness]’.Footnote ²⁷⁵ While another reports that he would welcome neuroimaging as ‘acknowledgement of what I am going through’ and proof that he is not ‘just crazy’.Footnote ²⁷⁶ Meanwhile a participant in Simon Cohn’s study recalls, ‘I did think to myself, “would it show up on the scan? Which part of the brain is it that is causing the depression?” You know, can you just point to something and say, “That’s your depression?”’Footnote ²⁷⁷ This optimism is echoed by some participating mental healthcare professionals, who hope that neuroimaging could provide their patients with ‘existential relief’ by offering biological reasons, ‘a physical basis’, and ‘meaningful explanation’ for their suffering.Footnote ²⁷⁸ Cohn, whose participants had been gifted brain images after taking part in neurological research, observes that some found these images ‘comforting’, carrying them in their wallets or displaying them in their homes.Footnote ²⁷⁹ Joseph Dumit similarly notes that, in contrast to the hostile ways patients with genetic disease have been observed to respond to gene images, in his experience patients with mental illness often react to neuroimages with care and concern, indicating that they see these images as representing their suffering, rather than its external cause.Footnote ²⁸⁰

Several studies report patients’ hopes that neuroimaging-based findings would also legitimise their experiences of mental illness in others’ eyes – including family and friends – by communicating the illness’s ‘reality’. Dumit observes that putatively diagnostic neuroimages carry medical and scientific authority that makes them a valued resource for accounting for oneself in social contexts and a basis for finding commonality with others and for engagement in patient activism.Footnote ²⁸¹ Cohn notes the particular importance of the material, portable nature of the printed brain image in communicating illness experiences.Footnote ²⁸² He suggests that physical images offer a means for patients to engage others and ‘convey private subjective suffering within the social world’.Footnote ²⁸³ For example, one individual with schizophrenia describes such an image as providing ‘proof now about my schizophrenia …. It’s there on the scan, no one needs question it any more.’Footnote ²⁸⁴

Cohn’s findings, however, also highlight the risk that friends and family will not always interpret neuroimages in the ways that participants hope, for example by failing to be persuaded that the images convey evidence of an ‘ordinary’ physical illness.Footnote ²⁸⁵ Indeed, neuroimaging researchers and health professionals participating in another study raised concerns that neurobiological explanations of psychosis might lead to conflict or paternalistic behaviour within families.Footnote ²⁸⁶ Not all participants living with mental illness invested neuroimaging findings with the authority or insight to explain or legitimise their experiences. Dumit quotes an individual with a diagnosis of bipolar disorder, who sees images representing their brain function as ‘genuinely exciting’ but then goes on to say, these ‘do not explain my madness nor do they guide me in what I can do about it’.Footnote ²⁸⁷ Similarly, others regard neuroimaging as a ‘crude limitation’ of what their illness means for them.Footnote ²⁸⁸

The optimistic expectations for explanation, validation, and health benefits noted above must be viewed in light of the current limitations in the reliability, accuracy, and appropriateness of neuroimaging-based psychiatric diagnosis and risk estimates, as well as misplaced assumptions about their objectivity. Images representing functional brain data look like cross-sections of a human brain and are often vividly coloured to indicate areas of greater or less activity. A number of authors note the compelling but potentially misleading nature of their seductive visual form and the apparent simplicity and objectivity of the insights they are taken to convey about the brain and mental health.Footnote ²⁸⁹ For example, Dumit describes neuroimages as ‘potent objects’.Footnote ²⁹⁰ Neuroimages are not, however, literal photographs of the brain but graphical representations of statistical analyses of highly processed data sets and the product of researchers’ choices and machine learning processes.Footnote ²⁹¹ Cohn suggests that by giving scan images as ‘thanks’, the neuroscientists in his study may be – albeit inadvertently – colluding in patients’ interpretations of these as literal pictures of disease and in their need for these images to validate their illness.Footnote ²⁹² In contrast to patients and the public, healthcare professionals and neuroscience researchers are more cautious or sceptical about the current clinical or personal value of psychiatric neuroimaging to individual patients.Footnote ²⁹³ Many of the anticipated therapeutic and personal benefits discussed here would be undermined, or even commuted into harms, if neuroimaging technologies were to provide misdiagnoses and false reassurance or to misdirect care pathways.Footnote ²⁹⁴ I will return below to discuss how a parallel risk may play out with respect to anticipated identity benefits.

When it comes to explicit discussion of the relationship between mental illness and identity, a number of studies report that people living with psychiatric disorders hoped that neuroimaging findings would help them to attribute their disorder to faults or features of their brains rather than part of ‘who they are’; in some cases this was reflected in people’s experiences.Footnote ²⁹⁵ Cohn observes that amongst his participants, ‘the scans are frequently used to endorse a categorical separation from their disease’ and offer a means by which patients cease to regard themselves as ‘intrinsically ill’.Footnote ²⁹⁶ As he describes it, seeing – or imagining that they see – the location of their disease in a brain scan image allows some living with serious psychiatric illness to view their disease as an external, physical ‘thing’, ‘something particular, bounded’, or ‘an alien pathological entity’, separate from the self.Footnote ²⁹⁷ Dumit too suggests that some people may use neuroimaging findings as a source of impartial facts from which to construct what he calls an ‘objective self’ – a mere biological object-in-the-world.Footnote ²⁹⁸ So, for example, someone may talk of their ‘depressed self’ as separable from their ‘true self’ and distance themselves from particular behaviours, as expressed in disavowals such as ‘the illness is speaking not me’.Footnote ²⁹⁹ A further, hoped-for benefit of this kind of separation – cited by both patients and clinicians alike – is that by demonstrating that mental illness is a ‘banal physical disease’ like any other, neuroimaging could help alleviate feelings of self-blame for illness and moral responsibility for recovery.Footnote ³⁰⁰ Judy Illes and her co-authors report that the majority of their participants who reported feeling self-blame for their depression expected that a diagnostic brain scan would significantly mitigate these feelings.Footnote ³⁰¹ Similarly, in another study, participants with diagnoses of MDD echoed hopes commonly voiced by mental health advocates that neuroimaging-based diagnoses could reduce the stigma and fear often associated with mental illness.Footnote ³⁰²

Some participating health professionals, however, worry that rather than facilitating a separation between identity and illness, neuroimaging-derived information about mental health could have the opposite effect, leading patients to see their disorder as an intrinsic, permanent brain ‘defect’ or ‘an error in them’ as a person.Footnote ³⁰³ These concerns may not be without foundation. For example, some studies suggest that receipt of neuroimaging findings could lead recipients to define themselves as ‘a depressed person’ or someone with ‘defective brain chemistry’.Footnote ³⁰⁴ Dumit cites a biographical account of living with depression in which the author questions the very possibility of disassociating who she is from her ‘sick brain’, given its role in her experience and agency.Footnote ³⁰⁵ And Cohn’s observation – that friends or family members may fail to invest neuroimages with the explanatory or exculpatory power that patients hope for – also indicates that stigma may be recalcitrant.Footnote ³⁰⁶ Indeed, researchers have observed that invoking genetic causal factors in psychiatric disorders can actually increase associated fear and prejudice.Footnote ³⁰⁷ Insofar as this is attributable to perceptions that biological causes make these disorders more serious or intractable, similarly negative attitudes might extend to evidence of neurobiological factors.

As these diverse findings indicate, the perceptions of the relationship between brain, mental illness, and identity – and the ways that these then shape or are shaped by real or hypothetical encounters with neuroimaging-based risk estimates or diagnoses – are far from straightforward. Neuroscience researchers and health professionals in one study report that perceptions of the connection between mental illness and the self varied widely amongst patients and that neuroessentialist views are not as widespread as might be assumed.Footnote ³⁰⁸ Patients themselves hold ambivalent views about the connection between brain and self. For example, Cohn observes that his participants ascribed ‘complex and multiple’ meanings to their scan images.Footnote ³⁰⁹ Dumit too suggests that seeing oneself as having a depressed ‘brain-type’ may be experienced in simultaneously objective and subjective ways, ‘lived by the person as well as against the person’.Footnote ³¹⁰ Similarly, Buchman and his co-authors note that their empirical findings reflect ‘the complex and sometimes contradictory ways in which people integrate notions of a disordered brain into a concept of self that at once has a brain and is a brain’.Footnote ³¹¹ This tension or vacillation has also been observed in empirical studies addressing the wider relationship between neuroscience and self-conceptions.Footnote ³¹² For example, Martyn Pickersgill and his co-authors conclude that while people are drawn to neuroscientific accounts of the self, they also often continue to view their brains not as a ‘magnificent epicentre of subjectivity’ but as ‘an object of mundane significance’.Footnote ³¹³

Through the Lens of Narrative Identity

The findings discussed above indicate that neuroimaging-derived information purporting to provide insights into mental health status often do feed into the ways individuals characterise themselves. And it seems likely that it might do so more widely if this kind of bioinformation were to become generally available in care or consumer settings. Citing a view prominent amongst the research and clinical professionals that he interviewed, Paolo Corsico concludes that ‘information around genomic and brain correlates of psychosis, as well as information around psychosis risk status and illness susceptibility is a powerful tool in the process through which research participants and care recipients define their identity’.Footnote ³¹⁴ As with the two previous illustrative examples, the ways and extent to which this category of personal bioinformation is likely to affect recipients’ identity narratives will vary between individuals and circumstances and these effects may manifest in negative as well as positive ways.

Given that many of the views described above are voiced by people with existing mental health diagnoses or family histories of mental illness, it is perhaps unsurprising that – much as with genetic susceptibility testing – there are no widespread indications that neuroimaging-derived information would introduce wholly new categories of contents to information subjects’ accounts of who they are. Instead, for many, this information is seen as offering opportunities to adjust the self-descriptors that already contribute to their self-narratives – for example, by confirming a diagnosis or by allowing them to think of themselves as having a disease rather than being ‘crazy’. And the most notable anticipated impacts lie in the potential for neuroimaging findings to provide fresh interpretive tools with which people are able to reframe their lived experiences, reinterpret the meaning of mental illness, and find a place for it within – or outwith – their accounts of who they are. If, however, neuroimaging were to be used to identify the pre-symptomatic risk of serious disease in those without a known family history of mental illness, we might perhaps anticipate different reactions – perhaps ones more akin to the narrative disruption experienced upon late discovery of donor-conception.

The (re)interpretive opportunities offered by neuroimaging-based information are often welcomed, as exemplified by people’s relief, or anticipated relief, at having authoritative, external verification of their subjective experiences of illness or at acquiring grounds for seeing themselves as having a real, concrete disease. The specifically narrative advantage of this kind of interpretative facility may be seen in the opportunity to make sense of distressing experiences resulting from mental illness and to construct a more intelligible or resilient self-narrative around understanding that these experiences are symptoms of a disorder. Serious mental illness can itself have profound impacts on sufferers’ identities. Psychiatric diagnoses may be viewed as markers of difference and otherness and are often sources of stigma.Footnote ³¹⁵ And where distress, confusion, or delusions are amongst the symptoms, illness may be experienced as disruption to identity or loss of self.Footnote ³¹⁶ It is not uncommon for accounts of these kinds of identity impacts to be characterised in narrative terms. For example, David Roe and Larry Davidson describe the onset of a serious mental illness such as schizophrenia as a bifurcation of the individual’s self-narrative.Footnote ³¹⁷ And – as discussed in Chapter 3 – Catriona Mackenzie and Jacqui Poltera characterise Elyn Saks’s experiences of living with schizophrenia as a fragmentation of self and inability to construct a narrative that hangs together in any intelligible way.Footnote ³¹⁸ Mackenzie and Poltera suggest that by ‘appropriating her illness as part of herself’, Saks has been able to understand the fragmenting effects of psychosis on her sense of identity, pursue treatment, and bring some coherence to her self-narrative in ways that ‘enable her to be the self she wants to be’.Footnote ³¹⁹ This reflects psychological research that suggests that those living with psychosis may benefit from constructing ‘recovery narratives’, incorporating acknowledgement of their illness into rebuilding their sense of who they are.Footnote ³²⁰ Neither Saks’s experience nor the literature on recovery narratives relate to neuroimaging specifically. Nevertheless, the empirical findings outlined above offer some ways of imagining how the perceived reliability and objectivity of neuroimaging-based findings might support (re)construction of intelligible narratives. Meanwhile self-narratives incorporating illness insights may, in turn, support individuals in accounting for and weathering distressing experiences and periods of ‘loss of self’ that accompany some forms of mental illness.

As highlighted in the previous illustrative example, it is important not to reduce all significant effects of encountering bioinformation solely to the information’s clinical utility or its emotional impacts. However, it is equally important not to assume that clinical utility is unrelated to identity development. If hopes that neuroimaging-based insights could open doors to more effective therapies and treatment compliance were to be vindicated, these insights could contribute to patients’ identities insofar as they help patients to manage symptoms that interfere with their capacities to make sense of their experiences and identities. And some of the therapeutic approaches adopted, such as talking therapies, might be precisely the kinds of practices that deal in storytelling and self-understanding. Beyond this, it is clear that psychiatric neuroimaging could offer new ways of thinking about the origins and nature of the mental illness, potentially – provided that disclosure is appropriately managed – recasting it in a less stigmatising light and helping alleviate shame and self-blame. If neuroimaging findings were able to reliably fill these practical and reinterpretive roles, they could make positive contributions to information subjects’ identities to the extent that they could support the development of self-narratives that are more intelligible and comfortable to inhabit.

If our identity narratives are to be inhabitable and sustainable and allow us to function in the world, however, it is not enough that they are rendered intelligible in our own eyes. They also need to be recognised and respected as such – at least to some degree – by the people we live amongst. The findings above indicate that, for some people, psychiatric neuroimaging findings could be of considerable value in bearing witness to their suffering and the reality of their disease and thus – they hope – in persuading those around them of the veracity of their self-characterisations and the role of mental illness in – or separate from – their identity. Having said this, the experiences recounted above indicate that this hoped-for recognition could be elusive or fragile. It is at the mercy of what others understand neuroimages to convey and the extent to which these match information subjects’ own interpretations. Findings from the empirical literature also illustrate ways in which neuroimaging-derived risk estimates or diagnoses could encourage stigma or fatalism, rather than supporting resilience. This could, in turn, engender self-narratives that are experienced as oppressive or limiting. Corsico notes that the neuroscientists and clinicians participating in his study are divided on whether neuroimaging-based diagnoses would exacerbate or ameliorate essentialist thinking, stigma, or prognostic pessimism.Footnote ³²¹ Importantly, these professionals place considerable emphasis on the manner in which findings are disclosed in shaping whether they are received as stigmatising and whether they foster resilience or hopelessness. In the words of one participant, ‘it’s all about delivery!’Footnote ³²² I will return in Chapter 7 to consider the ways in which delivery might be able to avert some identity harms and cultivate benefits.

As in the previous two examples, the kinds of impacts on narrative identity indicated by the views reviewed above do not depend on information subjects adopting neuroessentialist views of self. Even when participants welcome the objectivity and authority of neuroimaging findings, this does not automatically signal a biologised view of their identities, even if it is rooted in a biological view of mental illness. This decoupling is evidenced in a number of places. For example, it is apparent that some individuals embrace neuroimaging as a way of communicating the reality of their illness but do not seek to reduce the nature of this ‘reality’ to something solely biological or innate. And it is yet more explicit in instances where neuroimaging findings are valued for identity development precisely because they allow, or would allow, the individual to exclude mental illness from their story of who they are, reframing it as an ‘ordinary’ physical disease, rather than part of what defines them. This notwithstanding, healthcare professionals’ concerns that some patients might take neuroimaging-derived risk estimates or diagnoses to mean that they are inherently defective need to be taken seriously, particularly if this could reinforce or seed oppressive or limiting neuroessentialist views of the self.

This brings me to a crucial rider to what has been said thus far about the possible narrative roles of this category of bioinformation, particularly where these carry the prospect of making self-narratives more coherent or bearable. Here, the current, potentially surmountable, practical and methodological barriers to its reliability and clinical utility, as well as less tractable concerns about reducing mental illness to brain states or functions, cannot be ignored. The most obvious potentially detrimental effects of these epistemic limitations are health-related, for example where they lead to inappropriate diagnosis or care. And, as noted above, this is not unrelated to the maintenance of a reasonably inhabitable and coherent self-narrative, insofar as maintenance may be contingent upon effective symptom management. However, more direct threats to identity detriment may also be appreciated when the roles of neuroimaging findings are viewed in narrative terms. False or misleading findings, including those that obscure social and environmental contributions to mental illness, could lead recipients to misinterpret or misapply the meaning of their experiences of illness in their self-narratives. As discussed in the context of donor conception, this may lead to the development of an unsustainable identity narrative that provides a poor interpretive framework for lived experience. For example, misdiagnosis might poorly prepare someone to anticipate or tackle the way that symptoms of psychosis or depression influence their sense of who they are. And a welcome ‘meaningful explanation’ of one’s illness is no explanation at all if it is inaccurate or misleading. Indeed, it is possible that embracing such an explanation could jeopardise the current or future intelligibility of someone’s sense of themselves if it comes to occupy a role in their self-narrative to the occlusion of other factors more relevant to a more meaningful and intelligible story. Although the threats of these kinds of narrative jeopardy may still be remote while neuroimaging is not yet used in clinical psychiatry, they pose more immediate challenges if and when neuroimaging findings are made available in research or supplied in DTC settings.

This concludes the third and last of my illustrative examples. My suggestion here is that as with the previous two examples, findings from empirical studies offer compelling illustrations of how this category of personal bioinformation could play a range of both welcome and unwelcome, but nonetheless non-trivial, roles in the identity narratives of those to whom it pertains. However – and this is no small caveat – many of the potential narrative roles noted above are premised on the counterfactual reliability and accuracy of psychiatric applications of neuroimaging.

Before turning, in the next chapter, to focus on the specific nature of our identity-related interests and the variables that contribute to particular kinds of bioinformation meeting these interests, I want to take stock of where all three illustrative examples taken together leave my central proposition, that personal bioinformation can play important contributory, epistemic, and hermeneutic roles in the ongoing development of our narrative identities.

Diverse Narrative Roles

Perhaps most straightforwardly, the three examples illustrate ways in which diverse kinds of personal bioinformation may introduce or remove contents or plotlines of recipients’ self-narratives. For example, a recipient of a positive APOE test may start a regime of intellectual stimulation hoping to defer the effects of dementia or plan to embark on a long-deferred personal project – commitments and activities that then become part of how they describe themselves. And while one donor-conceived individual may acquire a painful storyline of themselves as someone with a difficult relationship with their mother, another may throw themselves into a rewarding and consuming search for donor-siblings. Receipt of bioinformation is just as likely to entail the removal or editing of existing self-descriptors as to add new ones. This is apparent in cases in which perceptions of being a strong or indomitable person are challenged by unexpected genetic susceptibility or when valued family relationships are damaged by reproductive revelations.

Another conspicuous cluster of narrative roles illustrated by all three examples relate to the introduction of fresh context or perspectives from which the recipient is able to re-evaluate or make sense of aspects of their embodied and relational memories and experiences and to interpret and adjust their self-narrative in light of these. These memories and experiences might include, for example, those of their own behaviour or that of others towards them; periods of ill health, changing mood, or impaired thinking; sensations and emotions; awareness of family illness; or manifestations of particular traits. The views related above illustrate ways in which bioinformation can cast these in a new light, change their meaning or significance, address uncertainties, or help account for tensions, anomalies, and gaps. For example, donor-conceived individuals may welcome learning of their donor conception because it helps resolve questions and confusion about family resemblances. And a neuroimaging-based diagnosis may help someone to make sense of distressing symptoms and to reconceive themselves as suffering from a disease rather than being ‘crazy’.

This is not the same as suggesting that bioinformation provides the truth about who someone is or that it functions as a bald corrective to mistaken beliefs about what they thought or experienced.Footnote ³²³ Rather, the claim here is that it provides them with the opportunity, interpretive context, and perhaps impetus to reappraise the contents – and relations between the contents – of their existing self-narrative in light of fresh insights into their biological, bodily states. This may then facilitate the repositioning, weaving-in, or exclusion of threads from the individual’s own account of who they are. This, in turn, offers the possibility of arriving at an account that is more intelligible, satisfying, or sustainable given wider lived experiences and other narrative threads. It is also clear, however, that bioinformation is not always useful or successful in fulfilling these kinds of reinterpretive or explanatory roles. For example, a discovery of donor conception during adulthood, which coincides with the death of a parent who could have supported them in making sense of this knowledge, may leave someone’s self-narrative less readable and inhabitable than it was before. And unexpected identification of a risk of serious physical or mental illness may be experienced as disorienting and existentially threatening.

The stories we construct about who we are shaped not only by what has already happened to us but also by our anticipation of what is to come. The diachronic nature of narrativity allows us to recognise how bioinformation’s explanatory and interpretive capacities can also function prospectively. Insights and knowledge gained now may support someone in making sense of, accommodating, or excluding future experiences of changing embodiment, relationships, or ill health from their accounts of who they are. While this – by the very nature of its future orientation – is less explicitly illustrated by the examples considered here than retrospective explanatory potential, it is signalled by the regret of donor-conceived individuals who wish they had been given the means to make sense of family anomalies earlier, and by those who talk of welcoming genetic susceptibility testing so that they can ‘get things in order’ or ‘rethink their priorities’. Again, it would be a mistake to assume that personal bioinformation invariably usefully fulfils this prospective narrative role. For example, the weakly predictive nature of an APOE test result might fail to deliver hoped-for certainty about dementia risk, leaving the recipient’s future self-narrative as foggy and unreadable as it was before.

The examples above also illustrate the role of bioinformation in initiating practical planning and behavioural changes. A narrative lens allows us to recognise that where bioinformation instigates steps such as embarking on treatment or searching for donor siblings, these activities are not necessarily distinct from identity development just because they are practical. They may themselves provide narrative contents or plotlines in their own right. They could, as previously noted, also be part of the individual’s efforts to gain some understanding and control over the way their self-narrative might unfurl in the future and to adjust their current behaviours or priorities accordingly. These activities and undertakings should not automatically be assumed to separate from the business of self-constitution. According to the practical conception of identity described in the preceding chapters, the roles and traits that contribute to the self-narratives that constitute our identities are not mere inert descriptors. They supply our motives and evaluative frameworks, and they are true self-characterisations to the extent that they are expressed and enacted in appropriate circumstances. For example, sharing genetic test results with family members or undertaking financial planning in anticipation of future incapacity may be inherent to what it means to someone to be a responsible parent and a loving spouse. Conversely, a positive test result could threaten someone’s self-conception as a responsible parent when they view protection of their children’s safety and well-being as integral to fulfilling this descriptor.

Having said this, it is apparent that a practical response to a diagnosis or identification of disease risk is sometimes just this – an opportunity for the recipient to undertake, for example, the appropriate preventative steps and relegate the matter to a brute fact of their biological existence, rather than something that defines them. Conversely, the experiences recounted above indicate that receipt of information does not need to result in action or behavioural changes to be experienced as making a significant difference to the recipient’s sense of who they are. Findings relating to all three examples suggest that bioinformation is often experienced as adding context or explanations, precipitating changes in outlook, setting expectations, or shifting relationships and roles in ways that make meaningful, non-trivial differences to recipients’ characteristics and experiences of the world, despite not being manifest in contemporaneous activity. For example, being alerted to disease susceptibility can allow someone to ‘see where they stand’, or knowledge of donor conception can lead to feelings of being cut adrift from a family, even – or perhaps especially – when there are few opportunities to express or discuss these feelings.

In Chapter 4, I hypothesised that personal bioinformation derives identity value from its contribution to the coherence and interpretive capacities of our embodied self-narratives. It is apparent that the same may be said of the relational nature of these narratives. The three examples examined here serve to underline the ways in which the embodied and the relational aspects of our self-narratives are often closely entwined and mutually constituting, with neither wholly reducible to the other. This is manifest in a number of ways. For example, encounters with bioinformation can reinforce or undermine particular relationships and the way these feature in people’s stories of who they are. Reasons for seeking, and subsequent reactions to receiving, genetic risk information may also play a part in constituting or undermining relational roles of care and responsibility for parents, siblings, and children. And people’s desires for information, and subsequent responses to it, often spring from and feed into the ways they see their self-narratives as entwined with those of particular others and with shared familial or community narratives. For example, REVEAL participants’ reasons for undergoing genetic testing and their responses to their results reflect their sense of already being characterised by the membership of families marked by Alzheimer’s disease and by wanting to contribute to research that could help others in the same position. As previously noted, the intertwining of self-constitution, biology, and social connections has been observed by Sahra Gibbon in the activism coalescing around BRCA carrier status, and by Alondra Nelson amongst African American and Black British users of DTC ancestry tracing services hoping to find their ancestral African roots.Footnote ³²⁴ Nelson’s phrase ‘affiliative self-fashioning’ captures the role that these kinds of biosocial activities play not only in adding plot lines but also in providing the kinds of dialogical contexts in which narrative meaning-making and construction take place.Footnote ³²⁵ Finally, it is apparent that the meaning and significance that particular personal bioinformation holds for recipients and the ways in which it affects their self-narratives are shaped by the meaning it holds for those close to them – for example, whether these people also see donor conception as a source of shame or mental illness as sufficiently explained by an image of brain functioning. I shall return in the next chapter to consider the part played by socially ascribed meanings in shaping the identity-significance of particular kinds of findings and insights.

It is critical to note here that alongside the potential for personal bioinformation to be welcome, exciting, explanatory, reassuring, or enabling lies the possibility that it is instead disruptive, stigmatising, oppressive, or uncomfortable. The conceptual picture I advanced in Chapter 4 paid too little attention to the prospect for identity harms. It is apparent that negative narrative impacts can take several forms. These may involve the introduction of unwanted or hurtful self-descriptors and narrative contents – as when genetic test results cause recipients to feel as if they are ‘marked’ or ‘damaged goods’ – or the severing of cherished narrative threads – for example where someone’s self-characterisation as a future parent is threatened. It is also possible that bioinformation could be experienced as unprecedented and shattering – as in cases of a late revelation of donor conception and consequently damaged relationships – to the extent that it undermines the recipient’s ability to recognise themselves or to see their self-narrative continuing in any recognisable or desirable form. This indicates the third dimension of identity harm brought to light by a narrative framing. This is the particular threat to the sustainability and future coherence of someone’s narrative posed by the active or implicit communication of misleading or false information.

While it is crucial that we recognise that personal bioinformation is not always sought or happily received, it is also important not to lose sight of just how widespread the desire is to receive, or not to be denied, information is across all three examples. While mindful of the potentially self-selecting participation of ‘information enthusiasts’ in the studies reviewed above, it is still striking that where there are quantified findings, the vast majority skew towards ‘wanting to know’. In the qualitative findings, this is manifest in phrases such as ‘to go through life with your eyes only half open doesn’t help you at all’Footnote ³²⁶ and ‘truth is always better’.Footnote ³²⁷ These kinds of attitudes are present even when people know that test results could reveal susceptibility to serious disease and amongst those who have had distressing experiences of discovery. Personal testimonies indicate that many information subjects really do value the insights and explanations, the interpretive tools, and the foresight that personal bioinformation offers to them when making sense of who they are in light of their health, bodies, biology, and relationships, and when (re)building a self-conception that ‘fits’ their past, present, and future experiences.

These observations point towards a third important area for refinement of the conceptual picture set out in Chapter 4 – the need to explore the complex relationship between identity-related impacts that are experienced as beneficial or detrimental. The illustrative examples indicate that there may not always be straightforward dichotomies or correlations between ‘beneficial’ and ‘harmful’, ‘welcome’ and ‘unwelcome’ bioinformation – where ‘beneficial’ and ‘harmful’ refer to the relative utility and suitability of bioinformation for the development and maintenance of coherent, meaningful, and inhabitable self-narratives. As illustrated by accounts of discovery of donor origins, initially shocking and identity-disrupting revelations may eventually come to be valued when they help the individual make sense of their previous experiences of familial discord and reconstruct a fresh, satisfying account of who they are. And it is plausible that the converse may also be true – for example, eagerly sought and welcomed neuroimaging results from a DTC clinic may be so inaccurate as to provide false reassurance to the client about their mental health and constitute a precarious basis for imagining their future and navigating emerging symptoms. I will return in the next chapter to further unpick the nature of narrative identity value and detriment and the complex relationships between their various dimensions.

A Dynamic, Multistranded Whole

The possibility that personal bioinformation may be upsetting but also welcome, or initially comforting but ultimately treacherous, is an important reminder that our identities are not inert, with the only prospects being preservation – where this is assumed to be a virtue – or disruption – which is commonly assumed to be harmful. Characterisations of identity impacts that reduce identity value to the absence of distress or dogged retention of our existing stories are too simplistic. Our identities are perpetually evolving and responding to our experiences and circumstances, and this may go better or worse, aided or undermined by myriad factors, including encounters with personal bioinformation. Furthermore, our identities are not homogeneous or monadic but complex, multistranded wholes in which the different constitutive threads bend and colour each other and are bent and coloured by their interpretive environment. As such, ethically significant impacts on our identities extend far beyond labelling or classification. A narrative framing highlights that it is not only the bald addition or removal of contents from our self-narratives that makes a difference to our identities but also the ways these are interpreted, woven together in different permutations, and enacted. The experiences and views detailed above support the contention that, rather than using insights into our bodies to create – in Dumit’s terms – ‘objective selves’ that are separate from our phenomenal, lived identities, our subjective accounts of who we are are richly embroidered by our insights into our biological characteristics and relationships.Footnote ³²⁸ Personal bioinformation provides new threads, as well as ways of reinforcing, redirecting, or unpicking old ones, and fresh lights in which to view the whole. A narrative conception allows us to appreciate that a mutually interpretive interweaving of experience and externally sourced data, which with varying degrees of success brings together the material and phenomenological, permits the construction of a lived and liveable embodied and relational identity. Recognising the diachronic, dynamic, and multistranded nature of our identities and the multiple roles that personal bioinformation may play in them is essential to grounding a robust and properly conceived picture of our identity interests in our encounters with this information. It is the precise nature of these interests and how they can be met to which I turn in the next chapter.