Neurodivergent gamete donors should not be automatically excluded

Many fertility clinics and gamete banks exclude candidate donors who are neurodivergent or have a family history of neurodivergence. Neurodivergence refers to a form of neurocognitive functioning that diverges from neurotypical or socially dominant norms, such as autism, attention deficit and hyperactivity disorder (ADHD), and dyslexia.

Guidelines from the American Society of Reproductive Medicine explicitly state that candidate donors with a personal history or a first-degree relative with autism should be excluded; while ADHD should be considered on a case-by-case basis. There is no general European directive regarding this matter, so the decision is up to clinics and gamete banks. In 2016, the UK's largest sperm bank rejected candidate donors based on neurodivergence (see BioNews 834).

The exclusion of neurodivergence in donor conception can also extend to practices after donation. When a donor-conceived child is neurodivergent, the further use of those donor gametes is sometimes restricted. This is in line with the policy of some clinics to restrict the further use of donor gametes following new genetic (risk) information. According to our Belgian study, about 13 suspected or detected genetic conditions were reported per 100 sperm donors. Other studies have shown that most of the restrictions following such 'adverse events' are due to alleged multifactorial conditions, mainly autism and, to some extent, ADHD. However, this categorical exclusion of (candidate) donors based on information about neurodivergence is unfounded.

First and foremost, excluding (candidate) donors based on neurodivergence aligns with a broader tendency to address deviations from the 'normal' through medical or preventative interventions. These interventions often pertain to a narrow concept of what makes someone valuable or desirable, and presume a hierarchy among different types of cognitive, emotional, and behavioural functioning. Neurotypical people might be in the majority, but they are not therefore inherently superior to neurodivergent minorities. Rather than approaching neurodivergence as a deficit or pathogenic condition that should be prevented, we could embrace neurodiversity and recognise neurodivergence as mere differences.

For some people, their neurotype is (part of) their identity, rather than a harmful pathology. Donor restrictions based on neurodivergence assume that this identity is a problem (and a problem to be avoided), often citing lower well-being reports of neurodivergent persons as a group. Yet, an average level of wellbeing is not reflective of individual experiences, which can vary significantly.

While we should not deny the challenges some neurodivergent people face, it is also important to recognise that wellbeing metrics are typically based on neurotypical standards. These standards may fail to capture the adaptive strengths and distinct values of neurominorities. Neurodivergence is indeed associated with benefits that are often overlooked by neurotypical others. Moreover, lower well-being can reflect stigma and societal non-accommodation, rather than some intrinsic deficit.

There are also practical reasons against the categorical exclusion of (candidate) donors based on neurodivergence, as the effectiveness of such exclusion practices remains uncertain. Indeed, the reduction in the probability of neurodivergence by excluding a (candidate) donor is unknown, as are the precise causes and nature of neurodivergence. If there is a hereditary pattern, it is multifactorial at best.

The reduction in probability obtained by excluding neurodivergent donors and donors with neurodivergent family members depends on the probability of neurodivergence when using gametes of an alternative donor. Many (if not most) families are neurodiverse, neurodivergent children are also born in otherwise neurotypical families, and much neurodivergence is unlabelled. As such, the probability of neurodivergence is not necessarily reduced when one donor with some family history is replaced with another donor with some other (perhaps unknown) family history.

Due to these ambiguities regarding the inheritance and comparison with an alternative donor, estimations of recurrence are difficult to assess. For example, research has been conducted on the relative chance of recurrence for autism, defined as the chance of autism among individuals with a family member with an autism diagnosis, compared to those without. For paternal half-siblings, this relative recurrence chance is two to three percent higher (according to some studies), or two to three times higher (according to other studies).

Importantly, these studies are based on half-siblings who are raised (at least partially) in the same family. The recurrence rate is expected to be lower when a genetic half-sibling is born in a different family and thus exposed to different social and environmental factors. Furthermore, these studies have some major limitations, mainly in quantifying the incidence, the variability in diagnosis, and incomplete or biased outcome reporting.

Even if these estimations were accurate and valid, and we follow the assumption that neurodivergence should categorically be avoided (for the sake of the argument!), it could still be argued that the reduction is too limited to justify the disadvantages of such exclusion. One disadvantage is that strict selection criteria limit the number of approved donors, increasing the cost and waiting lists for treatment. This could result in more unregulated donations (with higher risks), more children born per donor, and concerns related to justice. Furthermore, these exclusion practices are not only based on, but also contribute to, the idea that certain neurotypes should be avoided. Such practices normalise and reinforce certain attitudes or values, casting neurological differences as pathological, and furthering stigma and negative stereotypes.

To conclude, the categorical exclusion of (candidate) donors based on information about neurodivergence is unfounded for value-based and practical reasons. In some cases, there could be valid reasons for exclusion, for example, when a high chance of recurrence for a severe case is established. However, this should be the exception rather than the rule. Our priority should be to recognise the assumptions of these selection programs and their contribution to understanding neurodivergence as an intrinsic deficit and pathogenic condition. Rather than categorically excluding (candidate) donors based on neurodivergence, we should commit to an inclusive attitude to neurominorities.