By Charles Lister
Chair of the National Gamete Donation Trust
The recent public event organised by the National Gamete Donation Trust (NGDT) and Progress Educational Trust (PET) ‘Ten Years Since the End of Donor Anonymity: Have We Got It Right?’ sparked a stimulating and emotive debate representing a broad spectrum of opinion about donor conception (see BioNews 827). Many issues were fiercely discussed among the panel and audience, which comprised donor-conceived adults, donors, recipients, researchers and fertility professionals. Although no decisions were reached, I think it’s fair to say that there was an emerging consensus that much more needs to be done now to advance the needs of donor-conceived offspring, ensuring that those born after the end of anonymity have access to information about the nature of their conception and their genetic heritage. In short, as a sector, it was evident that we need to address ‘telling and talking’ as a matter of urgency.
It was apparent from the evening’s discussion that while the removal of donor anonymity was generally welcomed, the release of donors’ identities only means anything if donor-conceived children are aware of the circumstances of their conception. At present, whether an individual knows that they are donor conceived depends on the choices made by parents and would-be parents.
Given that many parents are still not actually telling their children about their origins, this deprives their donor-conceived children of, among other things, the opportunity to find out about their donor. In turn, as we heard from the experiences shared by donor-conceived adults at the event, this can have immense implications.
‘Telling and talking’ raises a number of important questions. How do we tell and talk to children about their conception and genetic origins? When should children be told? What is the best way of telling and talking? What mechanisms should be put into place to ensure telling and talking is addressed? What follow-up action can and should be taken to ensure children have actually been told?
Following the event, the NGDT moved quickly to take steps to progress the matter. Our advisory council, which includes representatives from across the sector, met the following day and discussed what can and should be done to encourage parental telling and talking.
While we didn’t reach any decision as to the best way forward, we did agree that the fertility sector needs to take further responsibility for ensuring that we foster an environment in which parental telling and talking becomes the norm. All donor-conceived children need to know of the circumstances of their conception and have access to information abouttheir gamete and embryo donors. How that is best achieved will require further discussion and consultation, drawing together professionals from across the industry, but also listening carefully to the voices of donor-conceived adults, donors and recipients.
We organised the event with PET because we think these issues are vitally important. However, we recognise that because of funding challenges we’re not the right party to drive this issue. While the NGDT will do all that we can, the fertility sector as a whole needs to take swift action to ensure that the needs of donor-conceived offspring are at the forefront of gamete-donation treatment policy, guidelines and decision making.