I have been looking for a peg to hang my huge concerns about the future of UK Donor Link on and the report by the Law Reform Committee of the parliament of the State of Victoria (see previous post) is a perfect one. In recommending access by all donor conceived adults to identifying information about their donors, the Committee went to great pains to say how very important counselling and intermediary services were to making these connections and those between donor conceived siblings and other members of donors and DC adults families. To quote, “All parties will feel vulnerable throughout this process and will struggle to determine the appropriate way to proceed. It is important that particularly leading up to and during this (linking) process, comprehensive counselling and support services be available to these people and their families”. They then go on to recommend that the adoption style family linking service that had been in place with the former Victorian Infertility Treatment Authority be reinstated as it was “far superior to the limited and fragmented services currently available”.
In the light of this statement it is shocking that the UK Department of Health is failing to back the vital support and sensitive adoption style service that is currently provided by UK Donor Link to pre 1991 donors and DC people. It is instead proposing to tender for a fee-based linking service to be run in combination with donor recruitment.
There is a long history here but briefly… following unsuccessful bids by UK Donor Link and the National Gamete Donation Trust (who bid for such a combined service) to the government’s Innovation, Excellence and Strategic Development Fund (IESDF), the DoH initially asked NGDT to put in a single tender for the service to a source of DoH funds that had previously been denied to exist. The DoH soon realised that they could not do this and the fiasco that has followed has revealed extraordinary ignorance of tendering procedures, and general ineptitude. Let alone the failure to understand that combining these two services could possibly produce any conflicts of interest or be perceived as being disrespectful to donor donor conceived people. It has become clear that contingency arrangements to transfer the service to a combined one, should the bids fail, had been made well before the IESDF decision. No-one at UKDL had been given any inkling of this and nor have they been offered any evidence base for the decision, although UKDL’s reluctance on ethical grounds to charge a fee to registrants in addition to them having to pay for DNA testing, is likely to have had something to do with it.
It would appear that the UK government is intent only on saving money and has no real interest in the welfare of donor conceived people and their families. Its only real concern is in keeping at bay a challenge under the Human Rights Act, probably in the shape of reviving Jo Rose and an unnamed child’s High Court action of 2002 when Article 8 of the HR Act was found to be engaged. Unfortunately legal advice indicates that a very minimal service, completely at odds with the ethical principles on which the current service is based, would meet the requirements of this judgement and a legal challenge would not be possible.
UKDL and NGDT have grants to keep them going until October 1st this year but once again these tiny organisations, each performing vital but very different roles, face a completely uncertain future. I would argue, however, that UKDL and those registered with them are the worst affected. They have several employees whose futures are in the balance and have the hugely delicate task of having to decide when to stop taking registrations if they are to close or the service is to transfer to another provider. They also have to explain to people at a very vulnerable time of their lives that they cannot be there for them any longer. It is heartbreaking.
There has been huge support for UKDL from registrants and all those around the world who care about donor conception families. At the moment I know UKDL staff and advisors are despairing on the one hand and on the other hugely heartened and affirmed by the news from Australia that there is somewhere that seems to value the kind of service they are giving.
With the future of a free, in-depth counselling and intermediary service for pre 1991 DC adults and donors in doubt and the continued uncertainty over the future of the functions of the HFEA, it is interesting that on Wednesday 4th March the HFEA will be announcing the launch of a Donation Strategy Group. Does this mean that they know something we don’t yet about their future or that simply without any guidance from the government they are carrying on regardless? I can’t think that it is the latter. Let’s hope this group, which will be advertising for members from Thursday, will be looking beyond donor recruitment, important as that is, and will take into account the Authority’s remit to the long-term welfare of donor conception families. This should include a proper intermediary support service that is capable of expanding as more and more donor conceived young people turn 18 and register to contact half-siblings and is fully in place by 2023 when the first children conceived with identifiable donors become 18. But the way UKDL is being treated doesn’t give one much hope of this happening.
The UKDL/NGDT story has a long way to run yet. I’ll keep you posted.