03 October 2016
ByAppeared in BioNews 871
Regulating Reproductive Donation
Published by Cambridge University Press
ISBN-10: 1107090962, ISBN-13: 978-1107090965
Buy this book from Amazon UK
This collection of essays from leading lawyers, fertility professionals, social scientists, ethicists, and others documents the experiences of families engaging in assisted conception, adding to the growing body of empirical studies in this area. It also assimilates the data on donor conception into the broader agenda of regulatory reform, linking the social and the legal and bringing together a range of multidisciplinary perspectives under a single overarching theme.
In several essays, the detailed legal framework governing donor conception is set out in all its complexity. Theresa Glennon outlines the regulations in the UK and the USA, while Pennings, Klitzman and Zegers-Hochschild explain how it works in the rest of the world. They highlight the differences between continents, and also within Europe, which are characterised by a mix of national and supranational laws, professional guidelines and local clinic rules. This 'incoherent and contradictory regulatory framework' – not to mention the influence of the European Court of Human Rights – makes for an impressive regulatory challenge, to say the least. One is left with the impression that harmonising legal reform will be essential in the future.
The breadth of this regulatory discussion is impressive, but there is depth too. Martin Richards presents a fascinating historical account of the regulation of donor conception. He writes that religious and social objections to donor conception can be traced back to the 1940s, when the Medical Defence Union advised doctors to match donors to patients so to 'avoid the dissolution of marriage'. In the 1960s, the Feversham Committee discouraged donation, but stopped short of recommending criminalisation. This historical context is essential for identifying the processes that may feed into the present regulatory framework.
The empirical observations themselves are fascinating. The collection does a good job summarising the key work in this area while also presenting a range of original contributions. For example, on the issue of donor offspring numbers, Freeman, Jadva and Slutsky observe how the removal of donor anonymity has meant that concerns about not knowing half-siblings have shifted to the potentially negative outcomes of donor offspring seeking out and finding one another. The data is limited, and there is little evidence on the longer-term outcomes of donor offspring contact, but the authors cite data from interviews conducted in the US showing that parents use connections with other donor-conceived (DC) families as a way of countering their lack of knowledge about the donor. They outline how DC families form a sense of community and solidarity, although there is a wide variation on how families understand the significance of genetic connections.
On rules around the selection of gamete donors, Graham, Mohr and Bourne set out the checks that donors undergo and their experiences of it, observing that clinics have different views on what makes a 'good donor'. They rightly point out that treating donors as a 'means to an end' is no longer feasible, which invites the questions of what role do they play and how do donors themselves feel about it? It is also clear that patients' views are evolving, and the donor's place is more heavily implicated in the kinship processes that come with donor conception. Blake, Ilioi and Golombok outline how parents think in creative and imaginative ways about an anonymous donor but, following the removal of anonymity, this now includes more practical concerns about the donor and what it would be like to meet him or her. Zadeh, Imrie and Braverman also suggest that patients are increasingly interested in a donor's appearance, character traits and education. Their interviews show that the extent to which patients are motivated by the information given about donors varies according to the regulatory context, observing also that matching of donors to patients or their partners was often encouraged by fertility clinic staff. In a complementary vein, Bobbie Farsides notes how each family's story about how and why they chose a donor is emerging as a 'key part of the narrative' in the context of greater openness and the 'normalisation' of donor conception.
As much as these studies provide a crucial social context to the discussion of regulation – both helping ascertain the targets for law reform, but also the possible consequential social effects of its implementation – they also highlight the need for further work. On donor offspring, while Freeman et al trace the control of offspring numbers to the risk of unwitting incestuous relationships, Katharine Wright points out that the actual harm from consanguineous relationships is rarely explored – although she does observe that they still present a threat of social or psychological harm, with the fear of entering into consanguineous relationships being a harm in itself.
This text also presents some very interesting, novel arguments on the regulatory debate. Pennings adds a unique perspective in a chapter highlighting the responsibility of physicians in relation to reproductive tourism, within a debate that he says often focuses on the travelling patient – should doctors have a duty to inform about treatment abroad? Karnein and Iser add a rather different, perspective on responsibility, asking us to consider how bringing new children into the Western, industrialised world may lead to higher carbon emissions. Nevertheless, the authors conclude that these 'harmers' do not justify phasing out assisted conception, which would created another 'specific kind of injustice', but instead recommend a 'head tax' on every new child and to consider if we should tax emissions directly.
Finally, this text offers more immediate practical recommendations. Discussing the non-identity problem, Stephen Wilkinson concludes that although donating for financial reasons alone may cause distress to DC children, it does not 'harm' them and should therefore not be prohibited on this ground alone. In other contributions, Rosamund Scott questions whether the UK's position on egg sharing is compatible with the EU Tissue and Cells Directive, while John B. Appleby recommends that DC people should be allowed to access identifying information at the age of 16 and that parents should receive identifying information about the donor following birth to help them in managing contact and informing their children.
On surrogacy, Vasanti Jadva outlines empirical data that examines the psychosocial experiences of those involved, showing that children born through surrogacy are comfortable. But there remain questions about how they feel as they grow older and also regarding contact with the surrogate. In another contribution, Natalie Gamble offers a range of reform recommendations, making a strong case for surrogacy reform in principle (and not just for pragmatic reasons). She says it is time to revisit the initial reluctance to support surrogacy and, if we take the view that surrogacy is a benefit, then we should figure out the best ways to support it.
The descriptive content can be difficult to trawl through and the conclusions have a tendency to sometimes be a little implicit, not to mention my ever-present unease with any departure from an overriding normative agenda and move towards evidence-based policy making (see my comments in BioNews). However, the value-added information content this text provides is reason enough for me to recommend it to all who study and research in this area. It is perhaps one of the more useful books I have read, both in terms of my own doctoral research into donor conception and also teaching medical law. But, for me, what stands out most of all is how the text provides an example of how interdisciplinary formulation of law and policy can work, and what challenges come with it.
Buy Regulating Reproductive Donation from Amazon UK.