On Wednesday 19th June Progress Educational Trust (PET) in partnership with University of Liverpool ran an event titled Anonymous No More? Donor Conception and Direct to Consumer DNA testing. We heard short presentations from genealogist Debbie Kennet, former sperm donor Andy Waters, donor conceived adult Becky and Louise Johnson, CEO of the Victorian Assisted Reproduction Treatment Authority (VARTA) in Victoria, Australia. All speakers, from their different perspectives, were clear that direct-to-consumer DNA testing means that in the donor conception world these initials now stand for Donors Not Anonymous. Four million people in the UK have already undergone DNA testing. The number world-wide is 30 million.
In answer to audience questions, Debbie spoke of the need for nothing short of a revolution in the way donor conception is managed worldwide. Becky talked about the earthquake in her life and the massive sense of loss when, in her thirties, her mother told her of her beginnings by DC. Andy was clear that ‘telling’ was the only way to go because anonymity is now dead and Louise told the audience about Victoria where retrospective legislation has given all parties to DC the right to identifying information and, through VARTA, to approach other parties for contact, although both donors and DC people can veto this. Putting information about DC on birth certificates was mentioned by several people as a way to make sure that parents ‘tell’, but with revolution in the air, this didn’t feel sufficient (or in my mind necessarily the right way to go). Becky hit the nail on the head when she spoke about feeling that the onus to change the way DC is managed is falling on DC people because they are the ones whose sense of identity is being shattered and lives turned upside down by finding out about their origins. It didn’t feel fair to her that DC adults should have to take the burden of pushing for change when so many other people were involved – from policy makers in the government and HFEA, to fertility doctors and clinics, to couples and individuals making decisions about family creation.
VARTA is held up by progressive thinkers as the model to follow but I can see that whilst it opens many doors it can also feel to some DC people as if it opens them, only to have the door slammed in their face if a donor vetoes contact. Why not just do a commercial DNA test and find your donor or half-sibs without having government contracts binding your actions. I also think it is wrong that VARTA can give identifying information to donors so that they can track down offspring, many of whom will not have known they are donor conceived.
Although I understand that time is limited at these events, my frustration came from the lack of talk about what can be done without legislation (although we need changes there also), at the level of how we speak about and approach donor conception and how the procedures are organised. For a start, donor conception is NOT a fertility treatment https://oliviasview.wordpress.com/2018/11/06/donor-conception-is-not-a-fertility-treatment/
DC should be treated from the start as a way of creating a different sort of family. Those qualified to talk through the implications of this would not be doctors and nurses but counsellors, social workers and the wide range of people who understand about family dynamics. Preparation for bringing about this different sort of family would be an accepted part of the contract (as it is in adoption) and doctors, instead of leading, would play an important but adjunct role in providing medical services when potential recipients were ready on an emotional level to consider a pregnancy. Part of the preparation would be an acceptance of the donor(s) as people who would play a part in the lives of children conceived from their eggs or sperm at an agreed point in their lives. I know that those of radical bent would want the donor to be a part of the child’s life right from the start, but I’m talking about starting slowly here. The vast majority of would-be parents would retreat to other countries for egg donation and to the often seamy world of private sperm donors if this was suggested now. Most people don’t like change and changes that appear to challenge the boundaries of the family are most strongly defended. I would see a slow progression towards a culture change where donors would be matched to recipients through mutual choice and agreement and contracts established that would be flexible enough to change with all participants needs but focusing first and foremost on the needs of the child.
The people missing on the PET event panel were parents. Why are parents or would-be parents so important? Because they are the people who are taking the decisions about where to go for donor conception procedures and whether or not to share information with their children. These are the people who are key to the well-being of future generations of donor conceived people. Of course how donor conception preparation and procedures are organised are going to have to change significantly as well. This means convincing the clinics that they are doing so much more than baby-making when they use donated gametes to help create a family or happily send people off to Spain for egg donation. It’s up-hill work, but SO worthwhile making the effort to do.
In my last blog https://oliviasview.wordpress.com/2019/06/23/openness-as-a-state-of-mind-for-parents-by-donor-conception/ I talked about the people who come to the Preparation for Donor Conception Parenthood workshops run by DCN. These couples and individuals are in the vanguard of those who really want to think about what they are doing BEFORE they choose donor conception. We facilitate their process of understanding openness as a state of mind. All recipients of donated gametes deserve this sort of information giving and support. Everyone needs to hear and respond to Becky’s cry for taking responsibility for change. Donor conceived adults, you are not alone.
I do continue to work part-time for DC Network but some of the ideas I have written about in this blog are mine alone and are not necessarily shared by DC N.