The Human Fertilisation and Embryology Authority (HFEA) recently announced membership of its newly formed National Donation Strategy Group, set up in response to the findings of its earlier Donation Review, which, it says, uncovered numerous barriers to gamete donation.
Although this work will fall outside of traditional regulation, the HFEA decided it appropriate to employ a national strategy group of a 'wide range of experts' to find new ways of tackling obstacles to sperm and egg donation, raise awareness of donation and improve the care of donors in the UK. It reassured us that its remit would cover attention to lifelong issues attached to donor conception, including their impact on current barriers to donation (on the basis of this assurance, we ourselves applied to join the Group).
However, it has decided that among the 'experts' it considers appropriate to have on board for their personal experience, only donors and donor conception parents need be included. Donor-conceived people have not been invited – and neither have professionals with core experience of working with parents, families, children or adults post treatment - despite the statement from the HFEA's chair, Professor Lisa Jardine, that it was seeking expertise with which to '…build a better environment for donation and particularly for future donor-conceived people' (our italics). While the Donation Review itself was not without its critics, what it must be commended for was the inclusion on its Advisory Group of two donor conceived adults as well as donors and parents. So why are their views not important here?
This development is a worrying echo of that of the Working Group looking at donor information set up by the Nuffield Council on Bioethics earlier this year (due to report in Spring 2013). Its remit is described as follows:
'Parents of people conceived using donor eggs or sperm may or may not choose to tell them about their genetic origins. Is this a private family matter, or are there wider public interests at stake? What kind of information might donor-conceived people and their parents need about their genetic origin? What interests do donors have in receiving information? This short project will explore the ethical issues that arise around the disclosure of information in connection with donor-conceived people' (our italics) (1).
Strangely, the Council also considered it appropriate to omit donor offspring and professionals experienced in post conception matters from its membership (even though it included a donor). It went one step further and excluded donor conception parents too - those with the responsibility for imparting information to their children about their origins. Although it has been rigorous in inviting such parties to give evidence to the Group, both in written submissions and in person, the absence of two key parties from the 'donor conception triangle' (of donor conceived people, parents and donors) and relevant professionals when the Working Group sits around the table, discusses its evidence and makes its recommendations is of major concern.
Social work, the discipline in which we started out, has a long tradition of involving service users in developing services. Although the tradition is newer in health services, it has for some time been a core feature of government policy (see for example (2, 3, 4)). So why are donor-conceived people (and those with core professional experience of working with them) missing from both these important bodies and parents missing from one? Is there a fear of putting their interests centre stage? Are they considered so significant - or insignificant - as not to warrant being invited to the table? Who is keeping them out - regulators, policy makers, those with treatment interests? And why?
We have heard it argued that there is no representative group of donor conceived adults from which to draw, but why should the Nuffield Council Working Group and the HFEA National Donation Strategy Group require people whom they appoint for their personal experience to be or feel responsible for reflecting the range of views held by others in their position - just as they do not expect this from the professionals that they appoint?
At a recent seminar run by PROGAR, Professor Ken Daniels, the internationally respected researcher, policy analyst and practitioner from Canterbury University, New Zealand argued strongly that we need to move from perceiving donor conception as a treatment choice to adopting a 'family building approach' to the services provided to donors, patients, donor-conception parents and donor-conceived people.
By sidelining crucial 'family' members and those with professional experience of working with them as a family, we run the very real danger of missing important opportunities to bring about well informed - and necessary - service improvements. So why is it happening?