Fifteen Eighty Four

Does it matter that you know who your genetic parents are, who you are related to, and how the story of your life began? Does it matter for your emotional wellbeing, or your feelings of connectedness and belonging? Is it significant to your identity and sense of who you are?

These questions sit at the heart of long-running debates about what kinds of information should be available to people conceived using donated gametes (sperm or eggs) about their conception and their gamete donors. Significant changes in our online behaviours and the seemingly unstoppable popularity of online ‘direct-to-consumer’ genome testing services like 23andMe and AncestryDNA require us to revisit these questions in a new light.

Legal entitlements to information

People turning 18 next year (2023), who were conceived under the care of a UK clinic using donor gametes, will for the first time be able to apply to find out who their gamete donors were. This follows a change in UK law in 2005 to remove donor anonymity. However, the kinds of information donor-conceived people can access through official channels differs greatly around the world and even amongst those born in the UK.

In many countries anonymous donation is still permitted. In stark contrast, in the Australian state of Victoria donor conception is recorded on birth certificates and legal reforms requiring donor identifiability have been given retroactive effect. UK law does not go quite this far. In the UK, once you reach 16 years of age, it is possible to apply to the regulator, the Human Fertilisation and Embryology Authority (HFEA), to find out if you are donor-conceived and to receive some basic, non-identifying information about your donor. From age 18, you can find out who your donor is. However, these information entitlements are not retroactive. And if your parents were not treated in a UK fertility clinic, there may be no official records at all. The HFEA requires clinics to advise parents about the importance of telling their children early and to offer guidance about how to go about this. But parents are not legally required to tell and evidence indicates that the majority do not do so.

The UK information access landscape has come a long way since an earlier era in which parents were encouraged not to tell and records of donation were maintained patchily, if at all. This nevertheless remains a landscape characterised by regulatory gatekeepers and age restrictions, and dependent on parents’ willingness and ability to tell. That is, until recently.

Revelations via consumer genomics

Increasingly, donor-conceived people do not need to wait for their parents to tell or to apply to official registers. Potentially life-changing discoveries are being made – sometimes by accident – through online genome testing services and social media. Alongside offering tests for disease susceptibility and other inherited characteristics, many consumer genomics services offer customers the opportunity to learn their degree of genetic relatedness to other (consenting) customers. This, often combined with personal details found through social media, can readily reveal donor parentage as well as the names of donors and donor-siblings.

Some online discoveries are the result of active searching by donor-conceived individuals – following up suspicions, frustrated by legal restrictions, or hampered by absence of official records. However, many discoveries are unexpected and shocking. They may happen while using online genomics services for fun or health-related reasons, or result from being contacted by someone else. Importantly, neither donor-conceived individuals nor donors need to use these services themselves for connections to be made and relatedness to be revealed. Genetic relatives, other services users, or members of donor-conception support networks may do their own sleuthing and then pass on what they have found.

Researchers and conveners of support networks have been warning for some time about the increasingly likelihood of online discoveries. This is now a reality, with the ensuing flood of information about relatedness hastened by the falling costs and rising popularity of consumer genomics, combined with the ubiquity of social media and relatively relaxed attitudes to online privacy. As a result regulators now urgently need to work out whether existing legal and practical arrangements for managing donor-conceived individuals’ access to information remain fit for purpose. The HFEA tasked its Legislative Reform Advisory Group in May 2022 to address this very question and to consider what appropriate changes might look like.

Ethical concerns

It is only possible, however, to know if access arrangements are ‘appropriate’ if we have a clear sense of which core interests and values are at stake. Common ethical concerns associated with expanding entitlements to information include invading the privacy of parents, donors, and their families, or harming families where assisted reproduction carries stigma. Further fears, though largely unsubstantiated, are that (further) removal of donor anonymity could deter gamete donation or parental openness. On the other side of the picture, regulatory obstacles to accessing information can threaten familial and institutional trust. And continued legal restrictions could encourage donors to have unwarranted expectations of perpetual anonymity. Most significantly, there is the widespread consensus amongst researchers and policy-makers that learning about donor conception in early childhood best supports donor-conceived people’s wellbeing.

Identity value

One further prominent ethical consideration is the potential contribution of information about donor-conception and donor relatives to a donor-conceive person’s identity. There is, however, deep disagreement about the identity value of these kinds of information.

For example, many donor-conceived people report that knowing about their donor conception matters a great deal to their sense of self. And the European Court of Human Rights recognises a legal ‘right to know one’s genetic parentage’ explicitly linked to people’s identity-development. However, others take a different view, believing that the connections that matter are those with the families who raise us. Critics also worry that emphasising a ‘right to know’ risks stigmatising those who do not know, devalues non-genetic relationships, and perpetuates the inaccurate and potentially oppressive view that our identities are defined by our genes.

Some of these disagreements can be traced to people talking at cross-purposes about what they mean by identity, or about the part played in identity by knowledge of donor conception. Ambiguity here is unhelpful, particularly if we want to make sure regulations and professional practices really do take the right steps to protect what matters. If – as seems plausible – what we chiefly care about when worrying about ‘identity impacts’ is supporting people’s abilities to develop and inhabit their senses of who they are, then it is a mistake and a distraction to assume we have to choose between claims that genetic parentage either defines us, or that it is irrelevant to our identities. There are other options.

One promising candidate for such an option is to think of this information as providing insights, not directly into our identities, but into our biographies: how our lives began, the choices our parents made, and traits we share with others. As such, it can play valuable descriptive, interpretive, and explanatory roles in our construction of our own stories, or narratives, about who we are. The value of information about donor origins can then be understood in terms its potential to help someone build an identity narrative that is intelligible to, and inhabitable and sustainable by them as they navigate a life shaped by their relationships and their embodied characteristics and experiences. Information about donor conception would not be unique in fulfilling these kinds of narrative roles, but would stand as a vivid example.

Acting to support identity-making

If this narrative picture offers a plausible explanation of the significant, if not universal, identity-value of information about donor origins, how should regulators respond to the changing information access landscape while supporting people’s identities? The answer is not straightforward.

On one hand, this picture suggests that the greater the opportunities to access information to use in constructing your identity narrative, the better. In particular, if identity development involves weaving together and making sense of the threads of one’s biographical story, then we can see why it would be desirable to learn of donor origins as early as possible, and why drip-feeding partial information could be problematic. Long delays between when parents are encouraged start telling, when young people can access basic donor information, and when they can find out who their donors actually are, risks leaving unreadable gaps, unanswered questions, and thus an unintelligible uncomfortable self-narrative. Perhaps then, if we are concerned about supporting identity-making, we should simply welcome greater consumer-driven information availability, with the fewest gatekeepers and legal restrictions.

However, there is clear evidence that the timing and way in which someone learns about their donor origins can make a huge difference to how this affects their sense of self. While careful, age-appropriate communication of information can make valuable contributions to someone’s identity narrative, late and unexpected revelations can instead disrupt self-narratives and render them unrecognisable. In the UK, the law requires that people are offered counselling before accessing any information about their conception and their donors from the official register. Considerable narrative harms may arise from receiving inaccurate information from online services or well-meaning friends, and from doing so in the absence of caring support to work out its personal significance and meaning. These narrative impacts are not limited to donor-conceived individuals. They may equally be felt by parents, donors, and wider family members.

Any suggestion, then, that regulators and healthcare providers should entirely withdraw from the field of information disclosure, leaving it to private operators, looks problematic, particularly if this means that people are more likely to encounter information in unplanned and unsupported ways. The HFEA has also flagged the importance of retaining access routes that do not require people to depend on commercial services. These factors suggest that it is now time to change the law to make identifiable donor information available to donor-conceived people and their families through official and supported channels from birth. They point to an enduring role for the HFEA and non-commercial actors, to counsel donor-conceived people and their families in preparing to reveal and access information or to deal with the aftermath of encountering it. And further resources should be made available to supporting parents through the challenges of achieving early openness about donor conception within their families. Tighter regulation of consumer genomics, not least to curb it being marketed as harmless fun and an ‘ideal birthday gift’ is also long overdue.

Building an identity narrative is a relational, and interpretive undertaking, one that depends on timely and carefully handled communication of information that can help us make sense of who we are. It is too important to be left at the mercy of the commercial interests of consumer genomics and social media companies.