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Ethics and law horizon scanning

12 April 2010
By Joanne Anton and Danielle Hamm
Policy Officer and Policy Manager, HFEA
The UK's Human Fertilisation and Embryology Authority (HFEA) recently sought the views of the interested public in planning its work for the next year, in an event focusing on a range of ethical, social and legal issues around the future of fertility treatment. Whilst the HFEA has a strong record of engaging with clinics, patients and the public on ethical and legal issues it identifies, it has never directly asked what ethical and legal issues should be considered in the first place.

So, for the first time, in February 2010, the HFEA Ethics and Law Advisory Committee (ELAC) held a public meeting to seek such views. The public appetite for such a meeting was clear from the number of people who signed up - the event was heavily oversubscribed. The meeting was attended by over 60 people from a range of backgrounds, including patients, clinic staff and policy makers. Over the course of the day, emerging issues around fertility treatment abroad were explored; attendees suggested and discussed issues for ELAC to take forward over the coming year and members of ELAC and attendees informally networked.

The first half of the day focused on fertility treatment abroad, and included three presentations from experts in the field, followed by an open discussion. Professor Lorraine Culley, lead of the 'Transrep' study on UK patients who travel abroad for fertility treatment, highlighted the current lack of knowledge on the number and motivations of such people. Veronica English, from the British Medical Association (BMA), then explored the ethical dimensions of UK clinic involvement in overseas treatment. She focused on centres participating in joint care arrangements with overseas clinics to provide treatment that would be illegal if carried out in the UK, such as sex selection or treatment using gametes from anonymous donors. Nicola Dawson, who has had successful fertility treatment in Spain, shared her first-hand experiences. Nicola's patient perspective provided invaluable insights into the personal decisions, dilemmas and experiences of people who seek fertility treatment abroad.

The issues raised during the presentations and subsequent open discussion included anecdotal comment that UK patients are often motivated to seek treatment abroad due to the shortage of donor treatment in the UK, particularly with donoreggs; that a distinction should be drawn between people going abroad for treatment out of necessity (e.g. shortage of donor gametes in the UK) and people going abroad to avoid UK prohibitions on treatment services. Because of this, it was felt that the HFEA should provide additional patient information on treatment abroad, especially on the legal differences between UK and other countries. It was also felt important that 'abroad' should not be treated 'as one place' - patients often have a very positive experience of treatment outside of the UK. Further, the impact on donor-conceived people born as a result of treatment abroad must be a prominent consideration in our future policy work on this issue.

During the second half of the day, attendees divided into small groups to explore upcoming ethical, legal and social issues of relevance to ELAC and the wider HFEA. Attendees identified the following priority issues for ELAC to consider:

1. Donation

2. Surrogacy, including arrangements abroad, particularly focusing on patient information

3. HFEA role as an information provider

4. Access to treatment, inequalities and a shortage of NHS provision

5. New technologies and how they enter the fertility marketplace

6. Consent to research - why research can be important and how patients' autonomy and confidentiality needs to be protected

7. Fertility preservation for social or 'lifestyle' reasons - reliability, effectiveness and the quality of patient information and consent

8. PGD (preimplantation genetic diagnosis) - new screening tests, both for patients and embryos

ELAC produced a report summarising the issues arising from the seminar, which has been circulated to attendees and published on our website. In March, ELAC considered the issues raised at the seminar and agreed that donation and fertility treatment abroad should be prioritised over the coming year. In addition, ELAC will examine the ethical issues engaged in fertility preservation, surrogacy and consent to the release of identifying information. Feedback received at the seminar was extremely helpful in informing what issues ELAC should prioritise, and the discussions of the day will be used to inform upcoming policy development work.

Given both the positive delegate feedback from the day and the usefulness of the seminar in informing our work and policy development, ELAC has committed to holding annual ethics and law horizon scanning seminars. In addition, ELAC will be looking for opportunities over the coming year to meet with people and discuss prominent ethical and social issues of relevance to our work and the broader sector.

SOURCES & REFERENCES
Ethics and Law horizon scanning seminar report
HFEA |  24 April 2010
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