Back at our desks and feeling as refreshed as we could possibly be after the New Year’s festivities, it’s time to look back at what turned out to be another busy and memorable year for the Council. As well as publishing two reports, opening two consultations and recruiting several new Council members, we have explored new ways of promoting public debate and engagement with bioethics issues. This venture has so far seen us take on the Bloomsbury Festival, the Houses of Parliament and even a children’s radio show. Here are some of the highlights of 2013:
Donor conception: ethical aspects of information sharing was launched in April. This report examined whether and how donor-conceived children should be informed about their biological origins; and the roles that parents, donors and others should play in decisions about information sharing. The report garnered widespread coverage across local media as well as stimulating debate on an important and sensitive issue.
In June we published Novel neurotechnologies: intervening in the brain, which looked at the regulation of new technologies designed to help people with serious brain disorders. This report looks mainly at the situation in the UK, although has been well received internationally – the Council has been invited to present the report in Sweden, Germany, Mexico, and to the Presidential Commission for the Study of Bioethical Issues in the USA. As part of its follow-up work, the Council hosted a workshop in December with clinicians, commissioners and patient organisations to discuss one of the key recommendations – a clinical registry for doctors to record data about outcomes and patient experiences from these neurotechnologies so as to improve knowledge sharing to help improve treatments.
New Council members
2013 saw a number of changes to the Council’s membership. We were sorry to say goodbye to several members: Sian Harding, Alison Murdoch, Bronwyn Parry, Nik Rose, Ray Hill, Rhona Knight, Tom Baldwin and Mick Moran. We thank them again for generously donating their time to us. However we were very pleased to welcome Peter Furness, Erica Haimes, Julian Hughes, Roland Jackson, Ann Gallagher, Paquita de Zulueta, Adam Wishart and Tom Shakespeare to the Council, and look forward to working with them over the coming years.
The Council announced in November that it is working with children’s radio station Fun Kids to develop an educational radio series ‘Demanding Dilemmas’. This is a series of short features to introduce children to basic concepts in bioethics and promote discussion of various topics covered by the Council, including biofuels, GM crops and children in clinical research. Episodes are being broadcasting during December 2013 and January 2014 and are available to listen via the Fun Kids website or by free download from ITunes.
We were also very excited to run a stand at the Bloomsbury Festival for the first time, which gave us an opportunity to speak to a variety of people about our work, as well as furnish many festival goers with our wide range of reports and publications.
Another new collaboration for 2013 is a Council-sponsored three-month Bioethics Fellowship at the Parliamentary Office of Science and Technology (POST). This Fellowship is on offer to PhD students studying a bioethics-related subject, with the aim of promoting informed debate among MPs and peers.
In January the Council established a new working party to examine the collection and use of biological and health data, and its implications for research, treatment and privacy. An open consultation opened in October, seeking people’s views on the ethical issues involved.
A consultation was also held for our ongoing project on children and clinical research, and in August we hosted a very successful stakeholder meeting involving young people representing the Royal College of Paediatrics and Child Health (RCPCH) Youth Advisory Panel.
We were delighted to invite Professor John Harris to present the Council’s annual lecture in May. His talk ‘Freedom of Speech, Scientific Freedom and Public Safety: A two-pipe problem with a dual remedy solution’ took place at the Wellcome Collection. Guests attending the lecture also had the opportunity to watch the winning films of the Council’s Box Office Bioethics 2013 competition. The winning film makers attended the lecture to be presented with their prizes by Dr Rhona Knight, Chair of the Council’s Education Advisory Group.
It’s been an eventful year to say the least. We’re looking forward to the next one!