Who will look after our records?

Following the debacle of the consultation put out by the HFEA on increasing ‘compensation’ payments to donors, are we now to have another sham consultation?  This time on the future of the HFEA itself.  Now housed in the city tower that contains the Care Quality Commission (CQC) prior to the expected takeover, the HFEA had always hoped that by co-operating with the money saving intentions behind the Arms Length Body review it might be able to remain a separate unit within the CQC.   At a meeting with fertility industry insiders recently a senior HFEA figure indicated that these hopes had had a recent boost.  This was because a letter to Health Minister Simons Burns by Dame Jo Williams, head of the CQC said that going ahead with the move to integrate the HFEA into CQC mainstream activity threatened the commission’s ability to handle the tough duties it already had.  However, in last week’s Guardian Ian Sample, the science correspondent, reported that at a meeting with the health minister, senior figures at the commission were told they should continue with the plan to adopt the HFEA’s functions, despite their concerns.

On Friday of last week a Department of Health civil servant emailed members of the Project Group on Reproduction (PROGAR) to say that the DH intended to consult shortly on the detail as to where HFEA and HTA (Human Tissue Authority) functions are best transferred.

So plans are to go ahead with integration, but we are nevertheless to be consulted on where HFEA functions are best transferred.  Another cynical paper exercise?  And why should anyone care anyway given the HFEA’s complete disregard for ‘evidence’ in it’s own recent consultation.  A headline eighteen months prior to the announcement in October of egg donors receiving £750 per cycle, stated, “Egg donors to be paid £800”.  The Chair had clearly already made up her mind and wasn’t going to allow anything anyone else said to change it.  We should expect no different from a government that has side-stepped all the usual procedures to push their slash and burn Public Bodies bill (almost) through parliament.

Why should any donor affected person or family care?  Well, despite enormous misgivings about the HFEA they are the devil we know, and they do know an awful lot.  They hold the records of every donor assisted fertility procedure that has taken place since August 1991.  They hold the records of the donors and of the children.  Although they have not had the resources to put in place intermediary services for people seeking information from the records, they do understand how sensitive the information is and something of the needs of the people who approach the Register.  The CQC sets important laboratory and safety standards but the HFEA set ethical standards for behaviour in fertility clinics.  Their remit is wider and deeper than anything the CQC has ever been asked to do…and it has admitted to struggling with that.  The HFEA’s remit also covers the whole of the UK, whilst the CQC’s powers are for England only.  We could expect the CQC to retain the records, as they would have to do by law, but any interest in them or in the well-being of those whose information is contained in them would be well down any list of priorities and may not emerge for years, or at all.

We should be worried about what will happen to all those precious records and to the young people, parents and donors who seek information from the Register.  We should also be worried about who will be thinking about the needs of those of us who cannot bear children without the help of a donor; about our children and about the donors.  The current board of the HFEA is too big and with very few people who bring a psycho-social perspective or who are prepared to challenge the Chair or the executive.  But these things can be changed and at least there is a body whose remit is to take on all the very complex and demanding ethical questions posed by creating families with donor help.

So despite my cynicism about the possibility of being able to affect the outcome, DCN will respond fully to the consultation and I urge YOU to do so as well.  We have to have some hope that we can avert what one un-named HFEA person predicted as ‘a calamity waiting to happen’ if the proposed take-over happens.

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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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