05 October 2009
ByAppeared in BioNews 528
New disclosure laws for donor-conceived individuals and gamete/embryo donors in the UK have come into force, broadening access to donor genetic information. The provisions were enacted together with the vast majority of the new Human Fertilisation & Embryology Act 2008, approved by Parliament last year and aimed at updating its predecessor 1990 statute to be more in line with contemporary liberal attitudes and advances in reproductive technology. In 2005, the disclosure law was controversially relaxed to remove donor anonymity so that donor-conceived individuals upon reaching the age of majority can request names and contact information for their genetic donor parent(s).
The new provisions now extend access further to allow donor-conceived individuals, from the age of 18, to be able to trace any existing half-siblings who might also have been conceived through fertility treatment involving the same donor, provided all siblings consent by registering their details with a voluntary sibling contact register launched by the Human Fertilisation & Embryology Authority (HFEA).
Laura Witjens, chairwoman of the National Gamete Donation Trust, welcomed the regulations: 'People are curious about where they belong and identifying your siblings is just as much a part of belonging as knowing who your genetic parents are.' Professor Lisa Jardine, chairwoman of the HFEA, characterised the amended regulations as a 'real step forward', adding: 'It is vitally important that donor-conceived people can access information about their own, personal genetic origins if they wish to do so. The new act enshrines their right to this information and the HFEA has put systems in place to ensure that applicants know what information they can obtain and how to go about accessing it.'
The first donor-conceived children will not reach majority until this March, but the amended regulations have now reduced the age to 16-years-old to be able to request certain non-identifying information about their donors - including height, eye colour and hair colour - and receive any message the donor may wish communicated to them, as well as about any potential donor-conceived half-siblings - including the number, sex and birth year. Donor-conceived children from 16 may also request confirmation that someone they wish to be physically intimate with is not related to them. Reciprocally, donors have a right to find non-identifying information about the results, if any, of their donation - including the number, sex and year of resulting birth(s).
The provisions do contain safeguards limiting their scope. First, donor-conceived individuals may not obtain contact information for the legal children of a donor (even if donor-conceived through fertility treatment), thereby protecting the privacy of the donor's intended family. Secondly, the HFEA has a discretionary power to withhold information 'in special circumstances' should the disclosure in effect cause the identification of a non-consenting party. Lastly, identity information is only provided to 18-year-olds when either the donor or donor-conceived half-sibling have voluntarily registered their details with the HFEA or are donors who donated after April 2005. Therefore, disclosure is predicated on donor-conceived children being aware of their assisted conception. However, under the new legislation parents are not obliged to tell their children about their genetic origins.
If known, these children would have to value this genetic knowledge enough to provide their details on the HFEA's voluntary sibling database. Olivia Montuschi, co-founder of the Donor Conception Network, commented, 'It's important to have the choice.' Sarah Norcross, director of the Progress Educational Trust, supports balanced legislation and 'looks forward to the day when everybody knows this information but nobody cares.'