A sad and bad time for donor conceived people

It’s not a good time for donor conceived people at the moment.  Olivia Pratten has had her ground-breaking judgement that records of DC people should be treated in the same way as adoption records, overturned in the Court of Appeal in British Columbia, and it looks like the wonderful service, along with DNA records of offspring and donors, that has been available via UK Donor Link is going to disappear.  The history is long but the government have behaved badly and donor conceived people are going to suffer for it.

UK Donor Link, along with DC Network, have decided not to bid to the Department of Health for the combined service that would bring together donor recruitment with a miserable shadow of the sensitive and unique service offered by UKDL.  The reasons are set out in the press release below.  It’s a very sad day…

UK DONORLINK VOLUNTARY REGISTER SERVICE FOR DONOR OFFSPRING AND DONORS UNDER THREAT

A unique register service containing DNA records of around 400 adults searching clues to their genetic origins may be lost shortly, despite being earlier praised by Government Ministers and achieving international acclamation. UK DonorLink has since 2004 aided donor offspring hoping to find information about and make connections with the sperm or egg donors or half siblings to whom they are genetically related. Government funding for it has been under threat for some time but now the same government department that has praised its work has decided that it should be combined with a service promoting donor recruitment to become a ‘web-based model’ that charges its users.

Advances in medical science can sometimes prompt unforeseen emotional, medical and social consequences. It is now widely accepted that adults conceived through the use of donated sperm or eggs need access to information about their donors (and in some cases to meet them). UK law was changed in 2005 to give such rights to those conceived since the national system of record-keeping started in 1991– but this was not retrospective. Post 1991 donors too have been awarded rights to information, albeit more limited.

The UK DonorLink register meets a similar need for the many thousands of people affected prior to 1991 (but on a voluntary not statutory basis). Such as the woman who wanted to trace her donor to see if he could be a match for her bone marrow transplant; the family of a deceased donor that wanted to pass on vital medical information any offspring he may have – and the many offspring who want to know more about the person who contributed half of their genetic make-up. This includes registrants, like Rachel, only learned after she had grown up that she was donor-conceived, with the emotional trauma that this can bring:

Rachel, 29, said: “My parents never told me they had used a donor to conceive me, but when I was 25 I worked out that I could not be related to the father who brought me up and they had to tell me the truth. I felt shattered and isolated. But through the register and DNA tests I have been able to meet up with my half brother, and this has given me enormous comfort.”

This is sensitive work that cannot be dealt with safely through the impersonal channels of the internet. It needs highly skilled professionals who understand the complexity of DNA work and are experienced in assisting people like Rachel to cope with finding out unexpected information about their own identity, to think through the implications of searching and, if successfully ‘linked’, making contact with the other party. As Shirley, another registrant, said:

’The feelings that surround the discovery of the identity of one’s [donor] father or half siblings are complex and cannot be dealt with in a quick chat with a friend. A new sibling is not necessarily the best person to explore such feelings with….. This is not a job for DIY but needs experienced and qualified staff ’

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Press release FINAL 29 Nov 2012

UK DonorLink’s work has been praised around the world and yet it is set to disappear. The current annual cost of providing the service is £85,000.

UK DonorLink National Adviser, Dr Marilyn Crawshaw of the University of York, says:

“UK DonorLink has proved to be a vital service for the only group of donor conceived people and sperm and egg donors not provided for within the law and is looked on from around the world as a model to follow. As we have learnt from adoption, those coming forward to try and trace their genetic relatives – especially when they have been brought up in a cloud of secrecy about their origins and are now faced with the complexity and uncertainty of DNA to manage – need a service like this, one with professional support and guidance, if they are to safely navigate the difficult road ahead. As with adoption, such services should be publicly funded. The UK government should be proud of being an international leader in this field rather than allowing this much praised service to collapse”.

Background

In 2002 a High Court test case was taken by a donor-conceived woman claiming it was a human right for donor offspring to have information about their donors, or if records had not been kept, for a voluntary register to be set up to allow people to try to make connections. As a result of the judgment the law was changed to end anonymous donation and the Department of Health agreed to fund the voluntary register. The register opened as a pilot in 2004; then in 2008 the Department asked Parliament for powers to put the register on a statutory basis by linking it with the national register of donors and offspring held by the Human Fertilisation and Embryology Authority. But in 2009 that body refused, citing cuts to its budget – by the same Department. Exhaustive attempts to secure alternative funding proved fruitless despite government assurances of being ‘very happy with the service that has been provided’ and of being ‘…very keen to ensure the valuable lessons from the pilot… will be taken forward…’. In March this year, the Department announced that it was to invite tenders for a service that would combine the service with that promoting donor conception with a ‘new vision’ for the register seeing it move to a web-based model and have charges introduced. This would be unthinkable elsewhere, given the obvious dangers that it introduces – like saying that medical services no longer needed doctors or the legal system lawyers! The need for professional services together with support for the groundbreaking work of UK DonorLink has been expressed by all leading professional organisations in the field, including the prestigious British Fertility Society, and by the Registrants themselves. Such a need is made all the more crucial by the fact that DNA ‘linking’ is especially challenging in ‘half-sibling’ relationships given that reliability of results is never 100% certain.

The move also introduces an alarming conflict of interest. Services promoting donor recruitment focus on maximising recruitment numbers and customer care for donors and recipients; those serving donor conceived people and past donors and their families focus on the personal and social issues faced in the longer term unfettered by concerns about any impact this may have on recruitment numbers.

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Press release FINAL 29 Nov 2012

UK DonorLink (www.ukdonorlink.org.uk) is run by After Adoption Yorkshire (AAY), a regional specialist post adoption agency with its HQ in Leeds. Enquiries to:

For media enquiries, please contact:

Christine Gunter, UKDL Project Co-ordinator – Christine.gunter@ukdonorlink.org.uk  0113 264 1631

Christine Tidy, UKDL Project Co-ordinator – Christine.tidy@ukdonorlink.org.uk  0113 264 1631

Marilyn Crawshaw, National Adviser to UKDL – marilyn.crawshaw@york.ac.uk  01904 702060 / 07932 012691

Freda Atherton, Chief Executive – Freda.atherton@aay.org.uk  0113 264 6837 Barbara Stewart Communications and Marketing Officer  0113 264 6837 / 07582 212027

For advice and information about the UK DonorLink register, please contact:

Christine Gunter, UKDL Project Co-ordinator – Christine.gunter@ukdonorlink.org.uk  0113 264 1631 Christine Tidy, UKDL Project Co-ordinator – Christine.tidy@ukdonorlink.org.uk  0113 264 1631

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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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3 Responses to A sad and bad time for donor conceived people

  1. Silver says:

    This makes me very upset and angry. As an egg recipient – and now mum of a donor conceived child – I have always believed that the child is the important one in the donor equation. I know that the rights of the donors and recipients are not irrelevant but, really, can anyone seriously think that it’s OK to deprive donor conceived children of personal information that is available. My own personal view is that genetics is only one small part of the sum of a person – but that is MY view. How can I know what my son will think or feel when he is old enough to understand his origins? How can ANYONE? So if we are prepared to go into these situations, we need to be prepared to think beyond our own beliefs and leave doors wide open for a little person who may feel differently from us.

    I am increasingly concerned by the “money” aspect in donor conception. As it becomes more and more common for couples and individuals to seek donated gametes, so it has moved further and further out of the realm of the NHS in this country and more into the private clinics. This is good in some ways – we were told that it was pointless going on the donor list at our NHS hospital as it was so long and the private clinics have opened up possibilities for those of us turned away by the NHS. But, while clinics are regulated and I’m sure many of them put ethical concerns relatively high on their agenda, ultimately they are money-making enterprises. I suspect this is what leads some clinics to send people abroad, allowing them to think that the waits are very long here. I hope that is not behind this decision somewhere, considering the recruitment aspect.

    Thank goodness the DCN exists!

  2. oliviasview says:

    Thank you for this Silver. Saving money is indeed the motivation for the government’s move to combine the linking of donor conceived people with their donors (pre 1991) and current donor recruitment. They have been unbelievably crass and insensitive in the way they have gone about it,leaving many DC adults feeling distressed and abandoned…as if their needs really didn’t matter at all.
    We still don’t know what is to happen to the HFEA. Again, in another move to combine quangos, the proposal is that the functions of this organisation will be split between several bodies, the main part going to the Care Quality Commission. The Register, statutorily, will have to remain but access to it may become much more difficult and the chance of a sensitive intermediary service being developed for applicants to the Register, seems pretty remote as things currently stand. Sadly, things are not looking good.

  3. Pingback: A grandmother’s devotion…and a worrying story | oliviasview

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