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
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
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
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.