Page URL: https://www.progress.org.uk/hfeacop12a

This policy document is part of a response submitted by the Progress Educational Trust (PET) to the Human Fertilisation and Embryology Authority's Consultation on its 8th Code of Practice and Revised Consent Forms.


What information do you think those who are choosing a donor should be allowed to access about the prospective donor, as long as this has been made clear to the donor beforehand?

All non-identifying information that donor conceived individuals will be able to access once they are 16 (including the goodwill message)

Those choosing a donor should have the opportunity to learn as much as possible about the donor before treatment. This is in line with the broader principle that it is wrong for the authorities to withhold information from patients, unless there is a compelling reason to do so. There is no such compelling reason here.

Since gamete or embryo recipients will be responsible for the care of children resulting from donation, it is only right that they should be able to access any information that may influence their decision as to whether to use a particular donor. It is up to the recipient to decide how much of this information they wish to read, and what weight they give to it.

From the donor's perspective, however, there are some important caveats. While gamete or embryo recipients should have access to all available donor information, it does not necessarily follow from this that donors should be encouraged to give all of this information. Certainly, donors should not be coerced into giving more than the rudimentary information. We appreciate that that the HFEA is not proposing any such coercion, but we are concerned that it may nonetheless contribute to an environment where such coercion emerges.

In the long term, there is a slippage that can occur between good or best practice, guidelines, and mandatory requirements, where the classification of a practice in one category becomes the justification for promoting it to the more binding category. It would be a mistake for the HFEA or other authorities to make or encourage any pejorative assumptions about the amount of information that a donor gives. For one thing, there may be good reasons for not giving certain information. For another thing, even where there are no such good reasons, the judgement as to whether comprehensiveness of donor information is an indicator of donor suitability should rest (at best) with the recipient or (at worst) with the clinic, not with the HFEA or any other authority.

The importance that a recipient attaches to donor information can be broken down into two categories - utilitarian and emotional. It is right to presume that recipients will ascribe utilitarian (pragmatic and medical) importance to donor information, which is (among other reasons) why it is right that rudimentary information is available from all donors. However, it is not right to presume that recipients either will or will not ascribe emotional importance to donor information. Both attitudes should be accommodated, and the HFEA should remain neutral in the matter.

These caveats aside, providing those choosing a donor with all available donor information is sensible because it is consistent with the UK Government's recent policy of encouraging greater openness about donor conception. This policy informed the 2005 removal of entitlement to donor anonymity, and continues to inform initiatives such as the 'Telling and Talking' workshops that have been organised by the Donor Conception Network with the support of the Department of Health.

We are aware of concerns that providing those choosing a donor with all available donor information may result in certain donors being discriminated against, and the HFEA may come in for some criticism on these grounds if it adopts our suggested policy. Inasmuch as there are legitimate grounds for concern about discrimination against donors, we do not believe that withholding donor information from recipients is a useful way of addressing this problem. It should remain the recipient's prerogative to choose a donor, while availed of all non-identifying donor information. If the recipient's choice should transpire to conflict with existing anti-discriminatory legislation, then this is a matter that can addressed as and when it arises.

In practice, the current shortage of gamete donors may mean that there is little or no choice for a recipient when choosing a donor. This constitutes still another reason to promote provision of all available donor information to recipients, while simultaneously not obliging donors to give any more (or less) information than they wish to. If donors were obliged to give more extensive information about themselves, then the likely inference from this would be that feckless individuals should be disqualified from donating gametes or embryos. Such a message is not only objectionable from a principled perspective, but is also inadvisable from a pragmatic perspective. Given the shortage of gamete donors, the emphasis should be on qualifying rather than disqualifying prospective donors.