Page URL: https://www.bionews.org.uk/page_93703

Spot the odd one out: The missing place at the donor conception table

23 July 2012
By Dr Marilyn Crawshaw and Jennie Hunt
Marilyn Crawshaw is an Independent Researcher and Practitioner and an Honorary Fellow at the University of York; she co-chairs PROGAR and is national adviser to UK DonorLink.  Jennie Hunt is a Senior Accredited Member of the British Infertility Counselling Association of which she was the founding chair; she is a member of PROGAR and the Senior Infertility Counsellor at IVF Hammersmith. Both authors are writing here in a personal capacity.
Appeared in BioNews 666

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?

SOURCES & REFERENCES
1) Donor conception: ethical aspects of information disclosure
Nuffield Council on Bioethics | 
2) Involve
| 
3) User and public involvement
NHS DIrect | 
4) User and Carer Involvement in Service Planning
HealthKnowledge | 
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HAVE YOUR SAY
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Comment (User:110981 - 23/07/2012)
Well said! I would like to add that at least one donor-conceived person volunteered for both the National Donation Strategy Group and and the Nuffield Review - me! - and was turned down by both, so it can't be argued that there were no donor-conceived people interested in getting involved with these initiatives.
Comment (User:112985 - 26/07/2012)
Am I missing something but as far as I can tell the members of this group have worked in their respected areas for some time so why put the word experts in inverted commas? How very rude to a group of people who care very passionately about what they do and the people they help. Some of them work with a wide range of donor conceived people so can bring to the table a wide range of experiences rather than the personal thoughts of a few - surely a far better arrangement.
Comment (User:103841 - 30/07/2012)
Nick appears to have misread our Commentary and his criticism is therefore illfounded. At the beginning of paragraph 3 we make clear that we are referring to those with personal experience (as opposed to professional experience) of donor conception (hence our use of 'experts' to denote personal rather than professional expertise) but Nick appears affronted on behalf of members of the group with professional experience. I am also somewhat surprised by his statement that some of those on the group work with a wide range of donor conceived people:in their descriptions on the HFEA website, Tracey Sainsbury is the only professional that says that she does. This Commentary was not intended to be a criticism of who is included on the group - and it's sad that Nick has read it this way - but more to draw attention to who is excluded. Does Nick really think that it's appropriate to exclude donor conceived people when parents and donors are included?
Comment (User:110981 - 05/08/2012)
I now feel I'm missing something - not a single person on this group has worked with a wide range of donor-conceived people. Both the counsellor, Tracey Sainsbury, and the fertility lawyer, Helen Prosser, work with parents, not offspring, and Tracey Sainsbury only works with them at the time of treatment. From what I can gather the parents on the group all have young children, not adult offspring, so they can't comment on the perspective of donor-conceived adults, but parents' interests and the interests of offspring don't always converge (for example, the vast majority of offspring were in favour of the removal of anonymity for donors, whereas parents were divided) so parents can't speak on behalf of DC people anyway. Most of Tabitha Freeman's research has been carried out with DC children, not adults, and used hands-off collection methods such as online questionnaires. She seems to have had little actual face-to-face contact with DC people. As a donor-conceived person as far as I'm concerned there is not one person on this group who represents me. The HFEA simply can't argue that these people with their tenuous links to the donor-conceived are able to speak for us.
Comment (User:110981 - 05/08/2012)
Furthermore I resent the implication that I as an individual can't represent my demographic. I'm an active member of the UK donor-conceived community and estimate that I have somewhere between 50 and 100 DC people's e-mail addresses in my address book, and could contact dozens more via online forums. I believe I have a far better grip on where DC people are coming from than anybody on the Donation Strategy Group.
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