Family well-being and donor information

One of the most common queries we get in the DCN office is about how much information people are able to have about a donor at different points in the process. Point 20.1 in the Guidance section of the 8th Code of Practice produced by the HFEA says –

The centre should give people seeking treatment with donated gametes or embryos relevant non-identifying information about donors whose gametes are available to them, including the goodwill message and the pen portrait (if available).

However, the experience of many people is that the clinic is extremely reluctant to give any more information than a basic physical profile before treatment and even when a woman has become pregnant, they would prefer not to release any other information they may hold.

It is not easy to know what is going on here.  It is tempting to think that clinics simply don’t want to give up on the power they have traditionally had to select the ‘right’ donor for each couple or individual.   For all the emphasis on patient power and the sharing of decision making these days, there are some areas that doctors definitely prefer to retain control.  There used to be a lot in the papers about the possibility of making ‘designer babies’ if would-be parents were allowed to choose donors, but my sense is that it is much better recognised amongst the general public, even if not with doctors, that parents just want a child that will fit in their family in terms of looks in particular and perhaps secondly, and more controversially, in relation to educational attainment.  I know a number of families where parents have no tradition of further or higher education and have been somewhat surprised and sometimes rather over-awed to find themselves parents to an educational high flyer.  Not necessarily a comfortable situation for children either, although at least if they know about their origins they have an explanation for their difference.  But these days with donors coming from all walks of life, it should be much easier to make a match that feels comfortable to all families.  And that’s the point isn’t it, that would-be parents can know enough about their donor to feel comfortable and to imagine a family built with his or her help.  Having as full a description of the donor as possible, plus a pen portrait and good will message to the child written by the donor can really help with making a bond between a recipient and the child they are about to create or are already carrying.  And we know that increasing numbers of donor conceived adults are saying that having information about their donor is enormously helpful in in thinking about the different parts of themselves and who they are.

One of the reasons why the HFEA stopped giving out donor numbers to recipients and donors was because they feared these numbers were being or would be used to make informal connections on the internet.  The assumption was that this was a bad thing.  DCN attempted to challenge this very defensive decision but were told that the reasons behind it cannot be disclosed and are protected under the Freedom of Information Act.  Could it be that clinics are of a similar mindset and fearful of unknown legal comebacks, have decided that giving as little information as possible may make them less likely to be subject of legal actions in the future?

A more benign explanation may simply to do with clinics not putting effort into supporting donors in writing pen portraits and goodwill messages, either because these are not mandatory or because they don’t see the value in them.  The result is that they just don’t have the information to share with recipients.   Marilyn Crawshaw and a colleague from the University of York did a wonderful piece of as yet unpublished research in 2008 that looked at the role of professionals within fertility clinics in facilitating the writing of what they referred to as ‘later life information’ and the kinds of skills these professionals might need to improve the range and amount of information available.  Interviews were conducted with donors, donor offspring and professionals and information from these sources was used to construct a questionnaire that was sent to all UK licensed clinics.  From these different sources, some common messages emerged, namely the need for written guidance for professionals and donors; the importance for donors and professionals of feeling confident that it could be useful; the need for professionals to have dedicated time and appropriate skills for the task and the need for later professional support for all parties when information was released.

Until these excellent recommendations are acted on it seems that potential parents will continue to find confusing differences between licensed centres as to how much information about donors has been gathered and therefore available or they are willing to hand out.  What can be helpful for recipients is to know the relevant section of the Code of Practice Guidance (above) to quote to their clinic and to make it clear that this information has everything to do with future family well-being and nothing to do with ‘designer babies’ or defensive legal practice.

 

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About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
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