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Monday, November 29, 2010

Bionews Commentary

'The 'donated' generation': action now not formal apology later
29 Nov 2010. BioNews 586. http://www.bionews.org.uk/page_82853.asp
By: Dr Marilyn Crawshaw and Damian Adams
* Marilyn Crawshaw, adviser to UK DonorLink (UKDL), an Honorary Fellow and recently retired Senior Lecturer at the University of York and an independent researcher and consultant. (Speaking here in a personal capacity)
* Damian Adams, Medical Research Scientist, the Women's & Children's Health Research Institute. (Speaking here as a donor-conceived person)

Australia has, in recent years, had to face up to the social and emotional adversity caused by past policies. Formal government apologies have been made for the 'child migrants', 'the stolen generation' and the 'forgotten Australians'. These are the Barnardos and NCH children shipped from England to Australia, the Aboriginal children forcibly removed from their parents, and the Australian children abused while in state care.
Attention is now turning. A Federal Inquiry into Donor Conception is examining the plight of what Damian Adams has called 'the 'donated' generation' (1). These are the thousands of people conceived using donated gametes who have been denied knowledge of their biological kinship, heritage, familial health history and conception.
Australia is not the only place where this is happening. Olivia Pratten, a donor-conceived adult in British Columbia, Canada, is fighting for donor-conceived people to be granted parity with adoptees in their right to access records and identifying information about their genetic parent(s). She has taken her case to the Supreme Court. The eyes of the world are on that hearing.
In some legislatures, donor registers are being established, giving rights of access to information for those affected at the age of majority or thereabouts. In Australia, some states go further and have registers that facilitate voluntary contact between genetic relatives from birth onwards. They are increasingly well used, often by parents who are finding out how helpful it can be to have contact with a child's donor and other families who 'share' the same donor.
In the UK, the anonymity of donors was removed prospectively after April 2005 (2), partly because of a High Court challenge by donor-conceived adult Joanna Rose (3). Sadly, this was not made retrospective. Although those who donated between 1991 and 2005 have the right to re-register as willing to be identified, there has been no publicity to make them aware of this. This leaves as many as 25,000 people with no rights to identifiable information about their donor.
The plight of donor offspring born before legislation and mandatory record keeping was introduced remains dire. Those coming forward to seek information from fertility centres often find clinics have closed, their records have been destroyed or the clinic turns them away. Governments are failing to protect past records and the welfare of the associated offspring. In particular, countries are failing to address the needs of the older 'donated generation' who lack paper records.
The UK government has funded a pilot voluntary register called UK DonorLink (UKDL) (4) for these people since 2004. In the absence of paper records, it uses DNA testing to help identify possible links. This is complex and challenging work. While parentage is definitive, only the probability of sibship can be determined. This potentially leads to uncertainty and, also, variability as new DNA results are added to the database (5), but registrants report it offers them a window of hope instead of slammed doors.
UK DonorLink has been remarkably successful, despite limited funding and the difficulties of advertising to donor-conceived adults and donors from years ago. Well over 300 people aged from 18 to 70+ have registered or are in the process of registering. More than 30 people have been found to have a high probability of being related, mainly as half-siblings.
There is also a thriving group of registrants - donor-conceived adults and donors - who meet together, offer mutual support and provide advice to the staff about the development of the service. Before joining the UK DonorLink Register, many had never had contact with other donors or donor-conceived adults; UKDL goes some way to reduce that isolation.
The UK government has said the voluntary register should become permanent and has invited the UK's Human Fertilisation and Embryology Authority (HFEA) to run it (a decision is imminent), but its future remains uncertain. Yet the service it provides is vital. Unlike the HFEA services offered to donor-conceived people born after 1991, UKDL is not administrative-only. UKDL frontline staff have professional backgrounds in 'search and contact' work.
Delivering these services through administrative routes alone would be neither sufficient nor ethical for donor offspring or donors. UKDL staff report some registrants welcome support from professionals to help them through the process of registering, providing DNA, understanding DNA results, and making the multiple contacts that can sometimes result. For example, one group of 'highly probable' genetic siblings has 14 members so the next linked sibling will have to manage relationships with 14 new family members and family/friendship networks.
The world is starting to wake up to the idea that the responsibility attached to medical involvement in creating a child does not stop with conception. Internationally, there is an urgent need to provide long-term services - especially 'search and contact' ones - with sufficient resources and skill to meet the needs of all donor-conceived people, donors and their families. Waiting until there is another formal apology from governments later down the line before taking action is not good enough.

1. The meaning of the term Donated Generation
Donated Generation | 18 August 2010
2. Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations (2) (S.I. 2004 No. 1511) | 2004
3. Rose and Another v. Secretary of State for Health and Human Fertilisation and Embryology Authority, Case no: CO/3802/01 (High Court of Justice Queen's Bench Division Administrative Court) | 2002
4. UK DonorLink
UK DonorLink | 29 November 2010
5. Crawshaw, M. and Marshall, L. ‘Practice experiences of running UK DonorLink, a voluntary information exchange and contact register for adults related through donor conception’
Human Fertility Vol. 11 No. 4 pp. 231-237 | 2008

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