It’s always difficult to find the time to read articles so my regular rail journeys to see my beautiful grand-daughter have a dual purpose. In the recent past I have been accompanied by the Guide to Genetics produced by Progress Educational Trust and this week it was The Hastings Centre’s recent report titled Conceived and Deceived: The medical interests of donor conceived individuals by Vardit Ravitsky, Professor of Bio-Ethics at Montreal University http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=5678
The United States has long been acknowledged to be the Wild West of assisted reproduction and donor conception in particular. States have, or have not, legislated individually in these areas and many clinics are simply in the business for the money. They care little about donors or recipients as people and even less about the children who are the result of their interventions and the families they are to grow up in. Many destroy all donor medical records before the child turns 18. One state is bucking the trend. Effective since July 22nd 2011 the state of Washington requires any donor of sperm or eggs to provide a medical history and identifying information to fertility clinics. It also allows donor-conceived people to request this information from clinics once they reach the age of eighteen. Donors may still veto disclosure of their identifying information but offspring now have guaranteed access to non-identifying medical history.
Some commentators have all but dismissed this legislation as useless because of the veto that donors can apply but in a country that has so far steadfastly resisted regulation of any sort in this area, I think it has to be considered a huge step forward.
In his report Ravitsky very sensibly separates out the two main reasons why donor conceived people want information about their donor. The first is for medical and genetic inheritance reasons. The second emphasises broader a interest in donors’ personal information which is sometimes seen by donor conceived people as being helpful in constructing their identity, thus promoting psychological well-being. The new law in Washington state only addresses the first of these two. Ravitsky asks the question, “What do we as a society owe donor-conceived individuals in terms of obtaining access to information about genetic origins” but keeps the tempo low and the waters unmuddied by confining himself to the regulatory changes required to address the medical interests of donor conceived individuals, regardless of whether a human right to know one’s genetic origins in acknowledged. In doing so he opens himself to criticism from those who would say that it is imperative that donor conceived people are told about their origins and also those who believe that donor conception is inevitably damaging. Although I would count myself amongst those who advocate openness by parents, I find Ravitsky’s approach refreshing in that it takes one issue at a time. Do read the full report, it is very worthwhile.
Slow…generally seems to be the mood of the moment. Slow food (yummy casseroles) and slow (eco-friendly) travel are two examples. I’m usually rather a fast person. I never walk slowly, I get very impatient with people who speak slowly or who are slow to catch on, but I do believe that we should not rush change in the area of donor conception. For some people it seems that supporting and encouraging parents to be open with their children, pushing for the end of donor anonymity, ending payments for donors and promoting contact between donors and offspring at 18 is not enough. We should be putting the donor’s name on the birth certificate, making sure that children grow up knowing their donor (or ‘parent’ as some people would have it) from day one or, at the most extreme end of the spectrum, abolishing donor conception altogether. All at the same time as many people, even in the UK, one of the world leaders in legislative change and open culture, are going abroad to avoid identifiable donors, remain ashamed of their infertility and need for a donor and have no intention of telling their children anything about their conception.
Walter and I have always envisaged the future as being one where donors and recipients will be brought together by some sort of not-for-profit agency, whilst doctors are left to work their scientific spells to bring about a pregnancy. Donor matching and embryology have always seemed like strange bedfellows to me. When the day comes that neither men nor women feel less of a person for being infertile and are able to handle knowing their donor from the start (as of course the minority who choose known donors do now) it will be accepted that the donor is part of an extended family network. But with DC really only very recently out of the closet I don’t see this happening in my lifetime (but I am pretty old now!) and I would have thought it would take at least another couple of generations for the culture surrounding gamete donation to catch up with that of adoption and the openness that exists between adoptive and birth parents. Not that this is always unproblematic.
DC Network has always followed the raising awareness and education route to change. This won’t suit some donor conceived adults who long for something faster, more radical. But the slow way takes more people along with it and given that nothing is going to stop people finding ways to have children, better to tackle one issue at a time. Washington is showing other States the way in the US in doing this.
DC adult Olivia Pratten is of course leading the way in Canada in attempting to access medical and identifying information about her donor. In May last year the Supreme Court of British Columbia made a decision in her favour giving the province 15 months to draft new legislation that will not violate Section 15.1 of Canada’s Charter of Rights and Freedoms. The Court also granted a permanent injunction to prohibit the destruction and disposal of the records of gamete donors. The government of BC appealed the decision and Olivia has been back in Court over the last couple of days. We await the outcome. Fingers crossed for for my name sake.