I had a long telephone conversation with a donor conceived adult this morning. I’ll call her Mary. Now in early middle age, she was told of her origins a few years ago by her mother. Apparently there had been a lot of cancer in her dad’s family (he had recently died of a particularly pernicious form of the disease) and the hospital wanted to test Mary and her two brothers to see if they carried a gene for this. Not wanting to put her adult children through the tests unnecessarily, their mother broke the news in a rather brusque way and then indicated that she did not want to refer to the matter again. None of the rest of the family know about how the three children were conceived and Mary’s brothers apparently wish this to remain the situation. Mary, who has significant health problems quite possibly inherited from her donor and who is a mother of two children herself, does want to know about her donor and in particular would love to find some half-siblings…someone who looks like her. She also feels it is important that her children know that they too will not inherit their social grandfather’s tendency to cancer but may inherit the health problems of their genetic grandparent via their mother. As her decisions could impact on her brother’s wishes, Mary feels very isolated and unsure what to do.
Of course in this country UK Donor Link is the obvious organisation for Mary to register with to potentially have contact with her donor and half-sibs, but in order for this system to work many more former donors need to come forward to register their willingness to become identifiable. Donors from before the Human Fertilisation and Embryology Act 1990 – ie. those who donated before August 1991 when the Act came into force, may be concerned about becoming known because they are unsure if they could be financially liable for children (now adults) they helped to create. More likely, however, is that they just don’t know that there is a way for them to make these connections. The small amount of evidence that there is about sperm donors is that many of them do think about the families they helped to make and, as they grow older and have children themselves, do understand how important it might be for donor conceived people to have information about them…both medical and psycho-social. Post 1991 donors, whose names ARE on the HFEA register can also re-register as identifiable to offspring of 18 or over, but once again the resounding silence about the possibility of doing so has unsurprisingly resulted in very few men (and now women) contacting their clinic or the HFEA to re-register. Whose responsibility is it to publicise the existence of the register and UKDL? Both the HFEA and the Department of Health are sitting very firmly on their hands whilst former donors remain oblivious to the joy they could bring to those adults to whom it is important to know.
Off to Oxford this evening for another showing of Donor Unknown with Q & A and then to a further Q & A following transmission of the film at a documentary festival at University College London tomorrow at 7pm. Not sure how much more of Jeffrey I can cope with!