Book Review: Donors – Curious connections in donor conception?

Donors: Curious Connections in Donor Conception By Dr Leah Gilman and Dr Petra Nordqvist Published by Emerald Publishing ISBN-10: ‎‎ 1800435673, ISBN-13: 978-1800435674 Buy this book from Amazon UK

Dr Petra Nordqvist and Dr Lea Gillman's latest book 'Donors: Curious Connections in Donor Conception' seeks to challenge the terminology used within the world of gamete-assisted-conception, questioning the implications of the decision to donate on donors and their kin. This book thereby widens the scope for study and poses challenging questions about the restricted and limited discussions around donor conception.

Whereas previous research has mainly focused on recipients of donor conceptions, the donors themselves have not been widely represented in the studies undertaken so far. As Dr Nordqvist and Dr Gillman point out (through a meticulous review of the work published on donor research), this has previously been limited to questionnaire-based research; questioning the word 'donor' and challenging its 'unproblematic' status, linked as it is with simplistic clinical tags as either 'altruistic' or 'known', the authors go much deeper in order to examine the stories behind such labels.

Similarly, the assumption that only donor-conceived children should be given primary consideration is robustly challenged throughout and attention is drawn to the many connected parties that are not routinely considered in policymaking and by clinics. Some of the conclusions and recommendations reached in the final chapter will prove controversial to some; nevertheless, the authors argue their points from an evidence-based perspective and are realistic about what might be achievable.

The authors identify the discrepancies within the assisted conception process that make the donors almost invisible to the other partners in the process. In particular, there is a detailed discussion about the definition of a 'good' donor and the value judgements made around this. It comes as no surprise that donors are routinely side-lined and their knowledge of the outcome, particularly with IVF, has been historically patchy. Nevertheless, they might be expected to manage contact by adult offspring, at least since legislation covering donor anonymity changed in 2006 in the UK, and with the burgeoning use of DNA and ancestry kits that allow users to trace genetic relatives.

There is a detailed discussion about the side-lining of donors when the rights of donor offspring are given centre-stage – they are expected to be sensitive and responsive to the needs of donor offspring and recipients, yet they are seldom considered as anything other than a homogenous, two-dimensional group who must stay in the background until 'required' to step forward.

The writers point to progressive ideologies such as Freedom of Information for leaving donors potentially exposed, without adequate checks and balances to protect the rights of donors or flag the possibility of invasion of privacy from this legislation. This leads to a 'selective sense of agency' where donor-conceived people can trace their donor parent as adults without each party being adequately and clearly appraised of rights and responsibilities. This sense of agency, the authors point out, is unavailable to younger children. Thus, the timeline of any potential contact can stretch out potentially indefinitely, adding a burden of unresolved uncertainty for identifiable donors.

It is useful to read a careful and compassionate discussion about the history of disclosure in gamete donation, with a historical explanation of the reasons silence has been a preferred option until the early nineties (sperm donation, while an ancient covert practice, was widely considered taboo right into the late twentieth century, with attempts in the UK to ban it altogether in 1948). It is a useful reminder that there was a time when recipients were being firmly advised to keep gamete donation a secret – the opposite of current practice – a useful check for those of us who were lucky enough to benefit from the Donor Conceived Network's work in encouraging parents to tell their children at the earliest opportunity. The ethics of openness in clinical and media practices, it is observed, contribute to the expectation that the donor should be both 'available' and unseen, an ambivalent role at best which leaves both legislators and stakeholders with considerable challenges.

The impact of the transition from anonymity in donation to identity-release is discussed. Changes in policy and attitude are acknowledged by the writers, as is the role of the Human Fertilisation and Embryology Authority (HFEA) in shaping the conversations and language around donor conception. Dr Nordqvist and Dr Gillman also cast their gaze much wider in examining the unseen issues that donors experience in relation to their own kin and support networks.

Dr Nordqvist and Dr Gillman's research, in addition to being an invaluable resource for social scientists and policymakers, would be useful for donors whose experience of donating has been solitary and clinic-based. If the experience of being a recipient of IVF is bewildering and isolating, one can only imagine how much greater it is for donors, particularly if they are undergoing invasive procedures such as follicle stimulation and egg retrieval.

Recipients of gamete donations will find a great deal of material for reflection here, even if they now have grown-up offspring. For me, a recipient of egg donation whose children are aged 27 and 23, it is an opportunity to think carefully and gratefully about those unknown donors and my eldest child's unknown twin half-siblings.

For counsellors and clinicians, this work can help inform best practice and substantially widen the discussion around donor well-being. Students of social policy and sociology who specialise in this area of study will be grateful for its clarity and the ability of the authors to add fresh and wide-ranging ideas to a difficult and emotive subject. The words of one of the contributors to the case studies, Becky, a mother through egg-share donor conception and herself a donor perfectly sum up the way many of us think:

'I think we are going to have to take our children's lead, hope that we're making good decisions and apologise sincerely if, when they're adults in therapy and tell us everything that we did [was] wrong, own it and say, 'yes'. It was quite a new world, and we didn't know what was best. We did what we thought [best] but we're sorry as well.'

Buy Donors: Curious Connections in Donor Conception from Amazon UK.