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King's College London - Health: More than a medical matter

Who will look after donor conception if the HFEA goes?

23 July 2012

By Walter Merricks

Walter Merricks was a member (2002-2008) and interim chair of the HFEA (2007-2008), and chairs the Donor Conception Network

Appeared in BioNews 666

To many people concerned with donor conception - patients, parents, donors and donor-conceived people - the Government plans to abolish the Human Fertilisation and Embryology Authority (HFEA) sound extremely worrying.

Donor children born today will be entitled to information about their donor in 18 years time. Their parents and their donors are currently entitled to certain non-identifying information. Where and how will this information about genetic connections be held in the future? Although the Government says that the functions of maintaining the HFEA Register and providing information to those entitled to it will continue, people are right to be worried.

The Government's preferred plan is to transfer all the HFEA's responsibilities (apart from licensing of research), along with those of the Human Tissue Authority, to the Care Quality Commission (CQC). Unfortunately the CQC is in no fit state to receive these new functions and has made it absolutely clear that it does not want them, saying there would be 'little benefit and significant risks' in taking them on. The much-criticised CQC was the result of a 2009 merger of three predecessor health regulators – those regulating hospitals, social care, and mental health establishments, and is still struggling.

What is shocking about the Government's consultation paper is the dearth of references to the interests of patients, parents, donors or donor-conceived people. Its impact assessment makes virtually no mention of such concerns. The entire thrust of the document is about reducing expenditure; it proceeds on the naive assumption that the money that would be saved would have somehow been wasted, and, despite all experience, that the quality of service will not suffer as a result of institutional reorganisation.

Despite its occasional failings, the HFEA has a specialist board. Its staff have built up experience over the years. The Government does not even mention how the loss of this expert input will affect the service to the sector, to patients and the public.

Interestingly, the Government also mentions two less-preferred possible destinations for Register functions, while transferring most HFEA responsibilities to the CQC. The Register itself might be held by the Health and Social Care Information Centre, a body that holds large health-related databases. And the responsibility of providing information from the Register to those entitled to it would be transferred to the Department of Health which would outsource the work to an external provider. It states that this is highly sensitive work requiring counselling skills, and that the 'information can have a huge impact on people's lives' – perhaps recognising that the CQC may not be brilliant in this department.

So how can donor conception be best protected? Passing everything to the CQC would at least preserve all Register responsibilities together with licensing and inspection in one body, rather than splitting functions three ways. On the other hand severing the donor information function could at least preserve it from being lost in the CQC's vast sprawl.

The drawback would be that the team providing the information would not be linked to the team that has connections to the clinics or the team maintaining the Register itself. The paper does not mention the voluntary register of pre-1991 donors and donor-conceived individuals. This is held and operated by UK DonorLink, a Department of Health-funded charity, but future responsibility for it is under review. If outsourcing the information provision from the HFEA Register is pursued, it would make sense to give the job of disclosing information from both registers to a single organisation.

Overall this is a pretty dire set of options for donor conception. While responses to this consultation are sought by the end of September, there is a long way to go before any change actually takes place. New primary and secondary legislation will be required, and it is not envisaged that the new regime could be in place before 2015. In the meantime lots could happen to throw these plans off the rails. Some doubt whether the CQC can actually survive that long. Just wait to see what the report on the scandal at Stafford Hospital says about the CQC when it's published in the autumn.

Whatever happens, some of us will be trying to make sure the interests of patients, donor-conceived people, their parents and donors are not lost in the turmoil.




04 March 2013 - by Cait McDonagh 
Another full house for the final event of Progress Educational Trust's 'When it Takes More Than Two' series. This time attendees were invited to consider gamete donation from the perspective of the donor conceived... [Read More]
28 January 2013 - by Dr Louisa Petchey 
The Human Fertilisation and Embryology Authority (HFEA) and Human Tissue Authority (HTA) have been spared the 'bonfire of the quangos' it was announced on Friday, but will be subject to an independent review to improve efficiency... [Read More]
28 January 2013 - by Baroness Ruth Deech 
In January the Department of Health published its response to the consultation on proposals to transfer the functions of the Human Fertilisation and Embryology Authority and the Human Tissue Authority to the Care Quality Commission and the new Health Research Authority... [Read More]
26 November 2012 - by Sarah Norcross 
Gamete donation is big business at the Fertility Show. Why do clinics from far and wide pay thousands of pounds to exhibit in London? The simple answer is to make money. But why come to the UK? Because in the UK there is a shortage of gamete donors, or at least a perceived shortage, that's why... [Read More]
24 September 2012 - by Cait McDonagh 
'Quangoing, going, gone', a debate organised by the Progress Educational Trust and the Anne McLaren Memorial Fund highlighted the diverse viewpoints on just what should happen to the Human Fertilisation and Embryology Authority as the government seeks to streamline health regulation... [Read More]

16 July 2012 - by Rachel Cutting 
At the Association of Clinical Embryologists - the professional body representing clinical embryologists in the UK and abroad – we have grave concerns about dissolving the HFEA... [Read More]
09 July 2012 - by Professor Alison Murdoch 
Government intends to save money by improving the efficiency of regulatory bodies. Providers of fertility treatments also favour more efficient regulation as it would help them improve their own services. This common purpose - the need for improved efficiency - is reflected in the consultation announced by the government; the central question is how it should be achieved... [Read More]
02 July 2012 - by Ayesha Ahmad 
The UK Government has launched a consultation on the future of the Human Fertilisation and Embryology Authority (HFEA) and Human Tissue Authority (HTA) amid proposals to transfer the regulators' functions elsewhere.... [Read More]
02 July 2012 - by Earl Howe 
Standards should never come into question, but it's clear to this Government that NHS administrative costs can be streamlined. That is why I set out proposals to change responsibility for regulating fertility treatment and human tissue last week... [Read More]
19 April 2012 - by Rachel Pepa 
On 8 March staff at UK DonorLink were informed that the Government would discontinue the charity's funding as of September this year. They were told that the voluntary contact register service it provides for adults conceived with, or who donated, sperm or eggs before August 1991 would be transferred to the National Gamete Donation Trust by means of a single tender process, meaning it would be combined with the promotion of donor conception.... [Read More]

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