Perhaps Budget Day was not the best one for Nuffield Council on Bio-Ethics to choose to launch their consultation on Donor Conception and Information. Not that medical and social affairs journalists are particularly interested in this but the column inches and TV news rooms not choked with financial analysts, are swamped with those pronouncing on the fall-out from the controversial health bill finally having been passed. So not likely to be much publicity for this rather strange year long enquiry into the impact of disclosure/non-disclosure of information about genetic origins.
First take the members of the working group. Nuffield have been at pains to stress that people have been chosen for their ‘direct personal and professional experience with donor conception’ and not because of any organisation they have an affiliation to. So we have a GP chairing, five academics, a senior infertility counsellor and a woman who has been an egg donor. N0 donor conceived person, no parent of donor conceived people and no-one with experience in making links between those sharing genetic connections. They will be taking evidence in person as well as in writing but are currently suggesting that three representatives of each of the donor triangle – donors, recipient parents and offspring – attend a meeting of the working group together. Sounds like a rather crowded room to me.
Nuffield Bio-Ethics Council concerns itself with ethical values and it was helpful to learn at the meeting we had last week with Katherine Wright that their preferred way of working is to start by going back to first principles. This goes some way to explaining why the otherwise seemingly daft first of the ‘easy option’ quick questions on Survey Monkey is, “Should children always be told they are donor conceived?” There is a very simple answer to this. Yes.
Apparently Nuffield are hoping that organisations like DC Network will respond to the 12 much more in depth questions (available on the web site) but that anyone with a personal or professional interest will complete the 8 more straightforward enquiries in the on-line Survey Monkey questionnaire. How they are then going to be able to compare responses when the questions are significantly different is not explained, or maybe that isn’t the point. Anyone can of course answer the in-depth questions instead of using Survey Monkey if they choose…or just write a letter. This has to be an advance on the last highly flawed HFEA consultation when on-line responses were the only acceptable option.
I continue to be sceptical about this exercise, but DCN has no option but to co-operate and I urge all blog readers to do so too…even if Nuffield only end up reinforcing the current position. http://www.nuffieldbioethics.org/donor-conception