Practice experiences of running UK DonorLink, a voluntary information exchange register for adults related through donor conception

Abstract

Previous practices of withholding information from those conceived through donor conception are changing. However, little is known about the service needs of those affected. In response to this, the UK Government–funded pilot voluntary information exchange and contact register, UK DonorLink, was launched in 2004, covering conceptions prior to August 1991. It is the only register worldwide that relies primarily on DNA testing to establish genetic connectedness in the absence of written records.

Approximately 150 adults came forward to register in the first three years of operation, drawn from all interested parties. Matches between half-siblings have been made, but none yet between donor and offspring. Employing staff with expertise in post-adoption work has proved effective, as long as additional training and support specific to donor issues is provided. The infrastructure required to promote and deliver the service reflects the complex mix of skills and tasks required, and confirms that a service provided through independent counsellors alone would be inappropriate. Having a geographically and socially widespread potential registrant group, together with a limited budget, has limited the effectiveness of advertising and promotion campaigns. Ethical and emotional complexities arising through the direct service are highlighted, including those presented by DNA use.

Keywords:

• Donors
• donor offspring
• registers
• intermediary services

Notes

1 We recently produced a briefing paper about these aspects, which is available on our website, <http://www.ukdonorlink. org.uk> February 2007 Briefing Paper on Key Organisational Features; click on Recent Publications.

2 Its usage in post-adoption work has been challenged when referring to contact between birth family members who have never previously met (Clapton, 2006).

3 Following the submission of this paper, new legislation has been placed before the UK Parliament in the form of the Human Fertilisation and Embryology Bill. Provision for the HFEA to be given the power of authority to run or fund the running of a voluntary register is included. The Bill does not include reference to intermediary services, nor does it include a proposal for services in relation to any aspect of a voluntary register to be free.