Bad consultation…better outcomes

Open HFEA meetings can be very odd events.  They used to be very formal with the small number of ‘public’ attending treated remotely and rather awkwardly.  Lisa Jardine has attempted to change all that.  Yesterday she left her seat at the head of the horseshoe of Authority members and came and addressed the unusually large number of people waiting to hear the outcome of the Donation Review.  We were told that something special was going to happen just for us…but in fact what followed was just as the agenda stated.  A further attempt to put us all at ease involved some jolly joshing between LJ and Chief Exec Alan Doran, who also affected an Oz accent to greet some Australians present.  The awkwardness remains.  And the icy air conditioning in the room didn’t help anyone feel any more comfortable either.  But they are trying.

Despite all the above and DCN’s serious misgivings about many aspects of this consultation – not least that respondents were asked questions about donor anonymity, something which is not in the remit or gift of the HFEA, and the focus from the start was on a perceived shortage of donors rather than the welfare of offspring – the decisions made by the Authority yesterday are ones that DCN can endorse.

The first subject to be considered was donation between family members.  Following some complex arguments it was finally decided that, despite the fact that no cases of mixing of gametes between genetic relatives has ever been recorded in this country, that code of practice guidance should be issued actually outlawing such mixing.  It was also agreed that the HFEA would require clinics to submit data on whether donors are known to the recipient and the nature of the relationship between donor and recipient.  No such data on known donation (whether by family member or anyone else) has been required to be recorded before.  Further, it was agreed that the HFEA work in collaboration with the professions, in consultation with relevant stakeholder groups, to support the production of joint professional best practice on family donation.  DCN much looks forward to contributing to such a document.

The next topic was the number of families that any one donor could contribute to…known as Family Limit.   Here it had only been some clinic staff who had wished to increase the number of families created from each semen donor and their views were countered by overwhelming response from all other respondents, including donor conceived adults, who felt that if anything the number should be lowered or kept the same.  It was agreed that the status quo of 10 families per donor should remain.

There was much discussion of the data that had emerged during the consultation that only one or two families appeared to be being created from the semen from a large number of donors, although evidence gathered directly from clinics following this revelation seemed at odds with these figures.   A number of recommendations to help optimise the use of donor sperm were agreed and the Chair commented that this must be a first step in making sperm donation available to more couples and individuals than is currently the case.

The final topic was that of the conditions that donors may choose to put on their donations.  This had not been part of the public consultation and recommendations were based on legal advice.  The Ethics and Law Committee (ELAC) of the HFEA had given considerable thought to the matter of conditional donation as evidence had shown that the many of the restrictions placed by donors on use of their gametes involved people whose characteristics are protected under the Equality Act 2010.  However, ELAC concluded that it is reasonable for donors to restrict their donation, given the possibility for contact between donor and children) later in life.  The following compromise recommendation from ELAC was accepted by Authority members.

“Permit conditional donation and provide guidance: Provide centres with guidance which explains their duties under the Equality Act in relation to conditional donation.  The effect would be that centres may continue recruiting donors who place any condition on their donation provided that restriction does not fall foul of the Equality Act.”

An effect of this guidance may be that single women and older women, who are not covered by the Equality Act, find that fewer donors are available to them, but as it appears that only a minority of donors place any restrictions on the use of their gametes, restricted services for these groups are unlikely to result. The impact will be monitored.

Full meeting papers and appendices can be found on the HFEA web site from this link –

http://www.hfea.gov.uk/141.html

Roll on the October meeting for the big one, when the impossible questions around what constitutes ‘donation’ and/or selling of gametes, and what this might mean for donor, recipient and donor conceived people, will be addressed.  I’m not holding my breath.

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About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
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