HFEA meetings: Open to the public

24 February 2010

We thought you might appreciate our observations on the most recent public meeting we attended, on 24 February 2010, in London and conducted by the Ethics & Law Committee (ELAC), a sub-group of the HFEA.

This time there was a good turnout, at London’s Royal College of Physicians, with patient groups, students, and practitioners out in force. Lunch was excellent!

The focus of the meeting was a morning plenary session on fertility tourism followed by discussion, and small workshops in the afternoon which were aimed at identifying issues of future concern for ELAC to incorporate into their 2010/2011 work plan.

ELAC meets again on 23 March and they may produce a report on this February seminar, but to date there is nothing on the HFEA website. Here are some of our comments in the meantime.

There were 3 principal speakers.

1. Professor Lorraine Culley, Professor of Social Science and Health at De Montfort University, is directing a project exploring experiences of people who travel abroad from the UK for fertility treatment and discussed her project. It is a work in process and no analysis has yet been attempted but it was noted that the UK appears to engage in fertility tourism to a far lesser degree than other European countries.
It was acknowledged that this could possibly be because of the already liberal nature of UK legislation in this field. What could one get overseas that could not be obtained in the UK?

The reasons for travel might be because of superior technology, new techniques, internal constraints, conflicting laws on anonymity, cost issues, shortage of donors, waiting times, etc. It will be interesting to see the final report when the research is finished but too soon for conclusions. The shortage of eggs in the UK was considered the most significant reason for travel outside this country for fertility treatment.

CORE noted how little information was available on the motivation or welfare of gamete or embryo donors, but most particularly the women involved in egg ‘donation’. They are nearly always excluded from discussion, except when they are themselves patients prepared to share eggs in exchange for free IVF treatment.

We very much look forward to the completion and publication of this research.

2. Veronica English, Deputy Head of Medical Ethics at the British Medical Association, added very little to Professor’s Culley introduction, focusing ostensibly on legal issues, but by her own admission asking questions rather than offering answers. Her main query was whether or not it was ethical/legal for clinics to encourage tourism to other countries if the patient was trying to do something which was not permitted in the UK. As so little is prohibited in the UK this did not give her great scope for discussion.

Some of the legal questions raised need robust answers but they remain simply questions, even during subsequent interventions from the floor.

3. The final speaker had gone to Spain for treatment with donor eggs. After unsuccessful cycles of ICSI in the UK she was advised that her best hope of giving birth lay with donor eggs. She looked into options in the UK but opted eventually for donor treatment abroad. She ended up using donor sperm as well, as her husband also had fertility problems and a twin pregnancy resulted.
From CORE’s perspective the most interesting aspect of her narrative was her apparent lack of interest in the egg and sperm donors who had provided her with their gametes. The speaker glossed quickly over the fact that the first egg retrieval cycle had to be postponed because of the health of the donor, but no information at all regarding the sperm donor was covered in her presentation.

Question time after the speeches did not create any great controversies, but CORE raised the issue of the total lack of focus on the welfare of the donor, and Olivia Monteschi, co-found of Donor Conception Network, put in a strong word for the interests of the donor offspring which were also not on the agenda. It is certainly our opinion that both these aspects of donor conception should have been addressed.

The small afternoon workshops were lead by HFEA member/s and the other participants sat wherever they liked. There were two lay people who had fertility problems at my table, along with a couple of interested professionals. My colleague had more actual clinicians than me in her group, but only one patient representative.

The purpose was to identify significant legal problems on the horizon related to IVF practice. The patients understandably personalized the issues, and were reluctant to endorse any prohibitions, but the clinicians were surprisingly more conservative than we would have imagined.

Our observations relate to only two of the tables involved so no conclusions can be drawn from the experience, but at the plenary session afterwards an attempt was made to list all the issues discussed, with concerns to be brought to the attention of ELAC.

Older mothers, genetic testing including extended applications of PGD, intrafamilial gamete and embryo donation (mother to daughters, brothers to sisters, etc.), payment for donors, new technologies, were all mentioned very briefly as time was running out. We assume more information will be made available on this aspect of the meeting when ELAC sits at the end of this month.

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