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Human Clinical Embryology and Assisted Conception MSc


 

Rising from the Ashes: Two countries, two reviews of donor conception services - Australia leads the way

21 February 2011

By Damian Adams and Dr Marilyn Crawshaw

Damian Adams is a medical research scientist for the Women's and Children's Health Research Institute, but is speaking here as a donor conceived person. Dr Marilyn Crawshaw is an honorary fellow and recently retired senior lecturer at the University of York, an independent researcher and practitioner, and national adviser to UK DonorLink, and is speaking here in a personal capacity.

Appeared in BioNews 596
By one of those strange coincidences, Australia has just completed its review of donor conception services while the UK is just embarking on one. While many of the areas they look at are similar, there is much to ponder about their different ways of approaching it. The Australian Inquiry was conducted at federal level while, in the UK, the regulatory body, the Human Fertilisation and Embryology Authority (HFEA), is involved. In Australia, constitutional powers mean states have developed their own legislation and policies leading to a complex patchwork of services; trying to fathom what is 'allowed' where and how can be challenging, making the UK system look surprisingly coherent.

The central government in Australia agreed it was time to look at whether services were working adequately and what measures should be used to determine this. In the UK, the pressure for a review came predominantly from the fertility 'industry' amid concerns the gap between supply and demand is too high and is driving customers into the dangers of overseas treatment or, more cynically, is driving down UK revenues. But, in Australia, pressure has come from a different source: those directly affected, particularly the Donor Conception Support Group acting on behalf of individuals and families. This led the review to have a different flavour to the UK's, no doubt influenced by their recent history whereby not paying attention to the long-term consequences of policies led to formal state apologies to child migrants, the 'stolen' (Aboriginal) generation and the 'forgotten' (children abused in state care) generation. They wanted to know what their citizens thought about donor conception services and what improvements are needed; whereas the HFEA review appears to be driven by those wanting to increase the supply of donors to meet market demand.

The Australian Inquiry invited views about past and present practices, their regulation, the conduct of clinics and medical services, including payments for donors, management of associated data, and provision of counselling and support. It canvassed views about how many offspring should be allowed per donor and what the rights of donor-conceived individuals should be, see (1). All submissions were placed on the website within days of submission - with due regard for privacy for those that requested it - and were not constrained by having to meet a standard format, allowing people of all ages and from all walks of life to respond and say what they wanted to say. Indeed, it was heartening and saddening to read pieces by donor-conceived teenagers, for example, alongside those by the Fertility Society of Australia and to readily and transparently see what they all had to say. Open hearings were also conducted with a range of interested parties, professionals and those directly affected, where further evidence was presented. In fact, due to the amount of evidence collected on this topic, the report was delayed to avoid a hurried response.

The HFEA Donation Review is exclusively online - the result, apparently, of cuts to their budget - and responses will be constrained by the questions, maximum word count allowed and format rendering the exercise highly prescriptive. Neither written submissions in any other format nor oral submissions are allowed. Responses will not appear on the HFEA website as they are received or at any stage afterwards. Presumably, as in the past, applications may be made to 'see' the submissions once the review's report is published and decisions made, but these are likely to be few in number and restricted to researchers. The use of rather dubious 'evidence' in the 'Factsheets' and wording throughout suggests that decisions have already been made that some 'barriers to donating' are indeed 'unjustifiable'. In addition, respondents are asked to give in principle responses, but then made to choose from a range of proposed practices that do not include the option 'none of them', which leaves the document's balance in serious doubt. A lack of transparent explanation about how the review's results will be analysed and the HFEA's perplexing refusal to wait for the findings of the Nuffield Council on Bioethics consultation 'Give and take? Human Bodies in medicine and research' (2) in the autumn, before making its decisions, prompts further concern about whether the 'findings' will be influenced by the same skew.

In contrast, the report of the Australian Inquiry, tabled in Australia's Parliament on 10 February 2011, has produced findings that are both thoughtful and thought provoking (3). And one can be left in no doubt that its primary concern is to put those directly affected - donor-conceived people themselves -at the forefront. This pays homage to the lifelong implications for them, rather than any short term gains for service providers or prospective parents. The report is not perfect - we would argue that there are aspects on which it does not go far enough, such as retrospectivity - but it's an important step forward. So what are some of its main conclusions and recommendations for the UK to take note of?

  • Prohibiting donor anonymity nationwide, drawing those states yet to adopt such policies into line with the majority that do;

  • lowering the number of families from a donor to four and ideally only one;

  • continuing the ban on payment to donors and ensuring that only 'reasonable expense' reimbursements are allowed;

  • requiring counselling for those using donor gametes/embryos and for donors, including the option of this being independent of the clinic, to be mandatory;

  • recommending parents have a right to counselling after the birth of their children to assist with telling their child of its origins;

  • placing responsibility for provision of ongoing, at various life stages, counselling at both federal and state level;

  • recommending that birth registration should include some form of notation, whereby donor-conceived people can be guaranteed awareness of their status and provided with relevant information;

  • establishing a national donor register and also a voluntary register that includes a DNA database, of particular benefit for those without paper records of their origins, which would probably mirror the UK DonorLink system;

  • using joint state and federal funding to publicise the registers;

  • protecting all existing records;

  • reviewing the regulatory framework to ensure it meets requirements and considering making it more comprehensive and stronger;

  • setting up an Ombudsman type system to deal with complaints and concerns;

  • banning the import of gametes except where there is no ethnically similar gametes available.

Practices in some parts of Australia have also been moving ahead in ways yet to be seen in the UK. Infertility counsellors assist families who have used the same donor to have contact with each other, if they wish, so that children grow up knowing their 'siblings'. Donors and offspring, or their parents, are similarly helped to have contact if they wish, safe in the knowledge that professionals are on hand if needed. The quality of donor profiles in many clinics, produced with the help of counsellors and nurses, is commendable and a requirement of any treatment going ahead in some clinics. Those who do not wish to use professional assistance in relation to contact can also 'go it alone' because, unlike in the UK, it is considered good practice to routinely issue donor codes to parents.

Whatever the Australians have to learn from us on the test cricket field - our tongues are firmly in our cheeks as we write this, remembering the one-day series - there is no doubt the UK has much to learn from them on donation matters. The HFEA's policies should be far more centred on the emotional, medical and social well-being of those directly affected - donor-conceived children and adults and any offspring they themselves may have; their families; the children and families of donors - than is portrayed in the way that the HFEA consultation is both written and conducted. Those using our services deserve nothing less.

SOURCES & REFERENCES
1) Inquiry into donor conception in Australia - Terms of reference
Australian Senate Committee | 2011
 
Nuffield Council on Bioethics | 2010
 
3) Inquiry into donor conception in Australia
Australian Senate Committee | 2011
 

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