In 2022, Kiara Rae Schuh published her memoir Chosen Family in which she details her life as a donor-conceived person and her quest to find her donor siblings. Schuh wrote in the introduction to her book that not knowing her siblings made her feel sometimes incomplete. A year later, in 2023, Hayley King, a donor-conceived person and mother of donor-conceived children (co-author of this article), founded the group Donor Sibling Connections UK to lobby for regulation change to enable UK parents to connect with their children's donor siblings via the UK Donor Sibling Link before their child turns 18. This article argues for the importance of regulatory change so that donor-conceived people can receive identifying information about their genetic siblings during the formative years of childhood.
Since 2005, gametes donated anonymously for use in UK Human Fertilisation and Embryology Authority (HFEA) licensed clinics have been replaced with gametes from ID-release donors. As a result, upon turning 18, the majority of children conceived after 2005 can receive identifying information about the donor, and will also have the opportunity to join the UK Donor Sibling Link. These processes rely on the assumption that a person is aware that they are donor conceived and therefore knows how to apply for this information. The Donor Sibling Link only facilitates connections between donor siblings if both parties agree to such contact via actively applying to the service.
Whilst the Donor Sibling Link is a positive option for UK donor-conceived adults, its function is essentially 'locked' until adulthood. However, research (for example Hertz and Nelson's Random Families) has shown that many donor-conceived children (and their families) can in fact benefit from connecting with genetic siblings earlier than what is currently permitted.
There is growing awareness of research into the positive outcomes of early sibling connections and noticeable societal shifts in attitudes towards donor conception transparency; these developments, combined with the recommendations of a number of donor-conceived adults (such as Schuh and King), mean that many parents of donor-conceived children are turning to unregulated methods to locate donor siblings while their children are young. The prevalence of direct-to-consumer commercial DNA testing and easy access to personal information online means that many donor-assisted families are seeking donor siblings through online sleuthing and by joining unregulated direct-to-consumer DNA testing websites. In addition to DNA testing, parents are also turning to online community registries (ie the US based Donor Sibling Registry) or social media groups to seek out other families who may also share the same donor. While many families have been successful in connecting via these means, the risk of error could be considered high, due to the unverified nature of how connections are made (usually from comparing donor ID or alias details which could be mismatched).
Furthermore, many families who connect outside of the regulatory framework report feeling overwhelmed, especially if confronted with larger than anticipated sibling groups or donor connections who do not desire contact. In Schuh's case, she found siblings via the 23andMe DNA testing service and discovered half-siblings who were unaware they were donor conceived. Unexpected or unwanted contact can be distressing for individuals and families. Often, when donor-assisted families connect outside of the regulatory framework, there is no formal signposting to professional support services.
To address some of these issues, the Donor Sibling Connections UK campaign group wrote the report 'Our Say: Pre 18 Contact with Donor Siblings' which proposes regulatory changes to enable families to connect with donor siblings through the Donor Sibling Link before the donor-conceived person turns 18. The report suggests that an 'opt in only' framework could be used in which donor-assisted families register with the Donor Sibling Link and choose to be connected with other families who also 'opt in'. This opt-in service will not only enable UK families with donor siblings to connect through a regulated and verified channel, but ensure they are adequately directed to additional support services if required. This report was submitted as part of the HFEA review into 'Modernising the regulation of fertility treatment and research involving human embryos' (see BioNews 1216).' Upon publication of the report in November 2023, the Donor Sibling Connection UK campaign group was pleased to see the report cited within the HFEA's consultation document, specifically:
'We'd like to propose the HFEA also submit a recommendation for families to be able to connect with donor siblings through official channels (via the UK Donor Sibling Link) before the donor conceived person turns 18 (Donor Sibling Connections UK)'.
The HFEA went further to highlight 'the importance of donor sibling relationships' as a key theme in their report and included additional responses from other stakeholders that suggested the Donor Sibling Link is made accessible for donor-conceived individuals under the age of 18.
A growing interest in donor-conception stories and rights for donor-conceived people is increasingly evident in the media and programming being made at present. For example, this year was kicked off with a series on the subject, Born from the Same Stranger on ITV (see BioNews 1228). This interest has coincided with increased opportunity for online matching outside of the regulatory framework. Donor sibling connections under the age of 18 are happening and they will continue to happen - we need urgent changes made to the governing framework to help make these connections easier, safer, and fairer for these families and children.
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