From individual connections to intricate networks in donor conception

Published 03 March 2020

Donor conception was never straightforward, but recent developments in anonymity requirements and personal genetic discovery mean that relationships between donor and offspring are now more complex than ever before. Lucy Frith, Astrid Indekeu, Mariana Martins from the SIGs Psychology & Counselling and Ethics & Law report from a recent Campus meeting.

Until now two central themes have dominated discussion in third party reproduction: disclosure or non-disclosure to the child of the means of conception; and anonymity/non-anonymity of the donor. However, a Campus course held in Leuven in February explored a new and emerging concept in the field of donor conception - the development of ‘networks’ formed as a result of donor-conceived people meeting their donor and other donor relations.

Whereas previously we thought in terms of individual connections between a donor and donor-offspring or between donor-siblings, growing research in the field now shows that this view must be adapted. More and more connections are being made and forming networks in which the donor and his/her family meet the offspring and his/her family, or where people conceived by the same donor meet, and wider family connections are made. This development has been enhanced by new technologies, such as direct to consumer genetic testing, the internet and social media, all of which raise an opportunity to make and sustain networks across families and geographical locations.

Donor-siblings and donors
Rosanna Hertz, Wellesly College, USA, and Sophie Bolt, from the Dutch knowledge centre FIOM, presented data on one of these emerging networks, meetings between same-donor offspring. While relationships with same-donor offspring ('donor siblings') are commonly viewed as generally more beneficial than connecting with a donor, both speakers raised several questions which as yet do not have a clear answer. How will donor sibling relations continue to change? What is the effect on the well-being of the people involved in bigger networks of same donor offspring, especially when they are continually expanding? What kind of relationships will develop between a donor and several offspring? How can people integrate these new relations into their lives and how many is too many? This new development was illustrated by Maaike Janssens who talked about her experience as a donor-conceived adult who is now in contact with her 71 donor-siblings.

Current policy on donor conception focuses on the rights of the child and his/her wish for information and/or contact with the donor. There has been recent research on how donors understand their relationships with genetically related offspring and with the recipients of their donation. For example, both Petra Nordqvist, University of Manchester, and Nicky Hudson, De Montfort University, Leicester, presented data on how sperm donors and egg donors respectively give meaning to these relationships and how they manage and create what Nordqvist termed 'affinities'. These are relationships which are not just allowed to ‘unfold’ but are intentionally and carefully crafted and managed.

In these new developing relationships and networks there may often be shortcomings in the existing language, with people searching for words to express a different ‘grammar of kinship’, as explained by Jenny Gunnarsson Payne, Södertörn University. People use language that focuses on blood ties, genetics, gestation, intent of parenthood or epigenetics in a flexible way, she said, using different types of language depending on the context. While genetics is still the dominant way to understand kinship, the question was raised of how these future 'origin stories' might be expressed (eg, in the language of epigenetics, gestation, intent).

Implications for all stakeholders
Astrid Indekeu, also from the Dutch organisation FIOM, talked about the clinical implications of the changing face of donor conception - ie, what and how should practitioners respond to these new developments. Movement has already been seen in what ‘best support’ might look like (screening, implications counselling, preparation counselling) for intending parents and donors and what is the best model of support (consultative and reflective versus directive counselling). However, there was consensus at this meeting that counselling should take into account all parties involved and that it should be available throughout the whole process of donor conception, from the desire for a child to linkage between the donor-conceived person, the donor and the recipient. Yet gaps remain in the current offer of support, with challenges in how we can create continuity and cooperation between all involved professionals and provide quality of care.

From several contributions to this Campus course and the introduction by Lucy Frith, University of Liverpool, it became clear that the development of networks does not apply solely at the consumer level (donors and donor offspring); there is also an increasing focus on the different groups increasingly involved in donor conception - commercial organisations (such as direct-to-consumer genetic testing companies, sperm banks, egg donor agencies), and searching organisations (such as donor sibling registries). For example, in her talk Lucy Frith examined how direct-to-consumer genetic testing was already changing donor conception, with the possibility of finding donors and donor-conceived relations now increasing rapidly.

Sumrah Chohan from the Human Fertilisation and Embryology Authority (HFEA), the UK regulator, explained how the HFEA manages requests for information from the register they hold on all donors and those born from donor conception since 1991. This was a useful insight into the practicalities and sensitivities of providing people with information about their donor relatives. And Verena Ehrbar, University Hospital Basel, explained how Switzerland has prepared for its first requests from donor-conceived offspring for identifiable information, and the challenges for policy and professionals on the best approach.

The meeting left us with many questions which still need addressing in the rapidly changing world of donor conception. How should access to donor and donor-sibling information be organised? Who should keep these records - state-run registers, clinic records, or informal online groups? How are these connections managed and negotiated in practice? Are the levels of support provided for those using such services sufficient and who has responsibility for providing the support?

This Campus course was jointly organised by two ESHRE SIGs, Psychology & Counselling and Ethics & Law (Lucy Frith, Astrid Indekeu, Mariana Martins). The high attendance (106 registrants from 25 countries) reflects how donor conception is a new and globally shared challenge. This rapidly changing area needs further research to form the basis of future policy and governance initiatives.

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