As I was having my heart adjusted back to normal rhythm last Wednesday (and yes, it was successful) the Nuffield Council on Bio-Ethics was launching it’s long-awaited report into Ethical Aspects of Information Sharing in Donor Conception. It’s a weighty document, 162 pages with references etc. and an Executive Summary of 17 pages so it’s going to take some time to digest, but first responses that have come my way reveal considerable disappointment. Certainly donor conceived adults present at the launch event were incredulous at Point 29 (5.24 in main report) in the Executive Summary that states….”a person who chooses not to share information is choosing not to be ‘open’ but is not necessarily being dishonest. It is not, for example, usually considered ‘dishonest’ to choose not to disclose private information”. This is a wonderful academic argument that might work well in theory but falls apart when considered in the context of life in any family where comparisons of likeness, in terms of looks, habits and talents, is a topic of everyday conversation. In non-telling donor conception families parents will be avoiding and evading questions and mis-leading their children on a daily basis. Direct enquiries about family connections are likely to lead to direct lies. Deception by omission? I call it dishonesty, and it will be impossible to avoid. How can this possibly be a sustainable basis for a relationship that should be based on trust?
At odds with some of those at the launch meeting, I DO think that it is the responsibility of parents to tell their children rather than this becoming a function of the state, but I also think that Nuffield badly underestimated the self-interest of parents when it comes to the issue of telling. It is all very well the Report saying that parents need to listen to all the evidence about telling being best and then act responsibly, but for many men and women, anxieties that have everything to do with them and little to do with the child, will propel them down the path of non-disclosure. Nuffield is very keen on using the language of ‘interests’ rather than ‘rights’ and by and large I would agree with this less confrontational approach, but I find it distressing that when there is an acknowledged conflict of interests between parent and child, no weight is given to the needs of the child…the one stakeholder in the donor conception triangle who has not been able to exercise a choice.
On the Telling and Talking film made by DC Network some years ago, our (then) 19 year old son Will talks about being so proud of his Dad for having faced up to his infertility and made adult decisions about going ahead with donor insemination and being open about it. And that is what becoming a parent by donor conception means. It requires men and women to be full adults, facing up to their fears and anxieties and taking on the responsibilities incurred by choosing to have a child by donor conception. By failing to grasp this moral imperative, Nuffield has allowed its generally positive message that children should be told from a young age, to be diluted to the point that the British Medical Journal could legitimately headline its article on the Report, “Donor Conceived Children Should Not Have the Right to be Told about Their Origins”. Shocking.
If parents are unable to face up to their responsibilities to their children then I’m not sure that they are likely to take seriously Nuffield’s desire for them to act responsibly towards their donor. For indeed, if a child only finds out in a family quarrel or by accident in teenage years that they are donor conceived, then their desire to find their donor – or even in some cases to see that donor as an alternative parent – is likely to be much greater than the child who has always known. Pity the poor donor at the receiving end of these expectations and emotions. As Walter pointed out in his response to the Report, well-advised donors could insist that their donations only go to prospective parents who the clinic has identified as being committed to telling early. In this way, clinics would not have to refuse treatment to non-telling parents, the preferences of donors would do it for them. “That would be consistent with the Working Party’s preference for measures that empower participants in shaping decisions as opposed to having rules or limitations imposed on them.”
In many ways I am sad to spend so much time writing about the negative aspects of the Working Party’s deliberations. There is actually much to commend, particularly in the general approach: the emphasis on people and relationships (although I do think that the inclusion of a donor conceived person or a parent would have kept feet more firmly on the ground). The discussion at the beginning on how we think about how families are formed and kinship bonds is thoughtful and very worth while reading…’kinship bonds may arise as biological connections and/or may be forged through care and nurture. From one perspective, the link between a donor and a donor conceived person may be indisputably there, while from another it’s self-evidently absent.”
Hugely welcome is the recommendation that clinics should be taking a longer view of what it is they are doing…not just using science to create a pregnancy, but helping to build families. And this in the context of state promotion (referred to as stewardship) of donor conception as just one of the ways in which modern families are made. In sections 50 and 51 of the Executive Summary there is support for continued state funding of the voluntary register and recognition – long fought for – of the need for intermediary as well as counselling services for all partners in the DC triangle. Slightly more questionable is the recommendation that on a dedicated donor conception website, the HFEA should offer support to non-telling families who, in an oblique reference to DC Network, “may not feel comfortable with the under-pinning approach of particular voluntary sector organisations.” It is interesting to ponder on the advice that might be carried on such a site. Another welcome recommendation is that the HFEA, in conjunction with the Donor Conceived Register, should initiate a public information campaign about donor conception and the possibility for past donors to make themselves identifiable if they wish.” (6.57 main report).
So, a mixed bag. ‘Wet’, as a colleague dispiritedly described to me. “They just kept digging themselves deeper into a hole when trying to explain that concealment of donor conception was not being dishonest.” But on the other hand, it gives us all a hell of a lot to think and talk about. The almost forensic picking apart of the interests of different parties is long-winded but essentially fascinating and revealing. I might significantly disagree with parts, but I do welcome the contribution to the debate.