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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.

 

SOURCES & REFERENCES

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