It was a busy catch-up week last week but at some point I scanned and then cut out an article in Guardian Society about care leavers being able to apply for access to personal information held in their records under the Data Protection Act. The focus of the item was on the ways in which different local authorities responded to requests for this information, those seeking it often being told that records could not be located or handed files that were rendered virtually meaningless by the thick black lines of redactions. It then went on to illustrate the good practice demonstrated by West Sussex county council who realised from the outset the sensitive nature of these requests and that the way in which their staff handled them was likely to make a huge difference to the experience that the enquirer had. “You need to realise from the outset that this is someone’s life history,” says Maggie Lucey, data management and access officer at the Council. “You need someone who is a hybrid between a data protection officer and a bit of a social worker or a counsellor to do this job.” Not as straightforward a role as the job title might at first indicate. As Lucey went on to explain, “Forging a relationship with an applicant early on is crucial.”
All this made me think, not for the first time, about the feelings of donor conceived adults and donors…plus their extended families…when applying to registers and data bases for information potentially leading to connections with people sharing some of their genes. The anxiety and anticipation, the not-knowing-what-they-will-find-ness are likely to be very similar to those seeking ‘care’ records, even if the situations have few other parallels. Of course the other situation where family records are sought is adoption, but the needs of adopted people have long been recognised and intermediary services and/or counselling support is available through local authorities and agencies to facilitate connections, if this is what information seekers want. Connections between those sharing genetic material in donor conception is a very new area. I use what some people would call a rather euphemistic way of describing these links as for some people they are ‘family’ and for others they are simply those to whom there is a genetic connection but without the social and emotional component they would not regard as ‘family’. But for many in both groups, and those who would not choose to be in either camp, these genetic links have meaning and finding out more about the person who gave their sperm, eggs or embryos to help make them and/or half-siblings, is a journey they would like to embark on. Having someone to hold your hand, to make a relationship with on your travels, could make all the difference.
The Donor Sibling Registry in the States has guidelines about the etiquette of being in touch with other registrants and indeed searching for connections (such as in college year books) outside of the registry. Take it easy, go slowly, don’t reveal too much at first, respect each others wishes and needs. It’s all good stuff. I happen to know that Wendy Kramer (the founder) will occasionally provide a buffer between two registrants who are being extra-cautious about contact. She’s a great person, but with the numbers of offspring and donors now on their books, it would be impossible for Wendy to provide this service for even a tiny fraction of people.
UK Donor Link were in no doubt how important it was that their staff had the training and experience to make empathic and supportive relationships with people contemplating registering with them. They recruited a team of people from around the country. mostly from post-adoption services, gave them extra training in donor conception issues and used them to be-friend those who were taking DNA tests prior to registering or as someone to talk with if a link was made. Not counselling as such but using counselling skills as a befriender and mediator. Now that the service has passed to the Donor Conceived Register it is a bit unclear how much of this sort of support is available without being specifically requested.
The HFEA has been pretty slow in getting itself together in providing services for applicants to its register. Opening the Record, the report from the British Infertility Counselling Association but commissioned by the HFEA, reported just around the time of the ending of anonymity for donor in 2004/5. It recommended the setting up of intermediary services accessible to anyone affected by an application to the register for information, so including extended family members of both donors and offspring. I am glad to say that the three year pilot project for intermediary services to be provided by nationwide post-adoption services, agreed by the HFEA at its meeting earlier this month also includes close family members. To give them their due, since their future has been secured, the HFEA has been very pro-active in seeking to improve the quality of donor conception services across the board but I suspect that the paper to the Authority may have been expedited by the recent re-registration of three former donors who linked with post 1991 over-18s looking for information. Some hasty individual contracting of a very experienced post-adoption worker filled the gap but it was a clear indication that they needed to get on with putting these services in place.
There is a very good model for intermediary and counselling services for donors and donor conceived people in the Australian state of Victoria. The Victorian Assisted Reproductive Treatment Authority (VARTA) in Melbourne leads the way in enlightened legislation enabling donors and offspring to come together by mutual consent. Kate Bourne, a counsellor who used to work at Melbourne IVF clinic has been employed to help facilitate contacts and the following bullet points about the role of a counsellor in this situation are from slides she will present at the DC Network conference on 27th April.