April - May 2013    

In this edition of Update we invite you to join us at the launch of our donor conception report and our Annual Lecture in April and May respectively, and we bring news of policy developments related to the Council's work.

Annual Lecture 2013: Professor John Harris

John Harris, Lord Alliance Professor of Bioethics and Director of the Institute for Science, Ethics and Innovation at the University of Manchester will present the Council’s Annual Lecture on Tuesday 7 May: Freedom of Speech, Scientific Freedom and Public Safety: A two pipe problem with a dual remedy solution. 
 
Professor Harris was formerly the joint Editor-in-Chief of The Journal of Medical Ethics, and he is currently a member of the Board of Bioethics and many other journals. He frequently appears on radio and television both in the United Kingdom and overseas to discuss biomedical ethics, medical jurisprudence and related issues. This lecture will be preceded by a screening of the winning entries to the Council’s student film-making competition, Box Office Bioethics. Find out more / register for this event.

Donor conception report launch

On Wednesday 17 April the Council will publish its report that considers questions of information sharing in practices of donor conception in the UK, focussing on issues of privacy, openness, and access to information, and the implications of each of these for the individuals, families and groups affected by donor conception. At the launch seminar, members of the Working Party and invited guests will discuss the report’s conclusions and recommendations. Copies of the report will be available at the event, which will be chaired by Dr Toby Murcott, science writer, journalist and broadcaster. Find out more / register for this event, or request a copy of the report (available for free if ordered in advance or up to one week after publication).

Council's conclusions echoed by HFEA advice on prevention of inherited mitochondrial disorders

The Council’s report Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review was back in the spotlight recently when the HFEA announced its advice to the Government on the possible use of these techniques in treatment for affected families, following its own consultation on the issues. The HFEA reported ‘broad public support’ for the techniques to be offered to families at risk of passing on serious mitochondrial disorders, provided that the treatments are assessed to be safe, and that they are provided within a carefully regulated framework. Much of the HFEA’s advice to Ministers regarding policies and safeguards that would need to be implemented should the techniques be permitted for use in treatment is generally in line with the conclusions of the Council’s report, including for example the recommendation that mitochondria donors should not mandatorily be identifiable to resulting children born from their donation, and that follow up studies should be conducted. Find out more.

News on other projects

• Current project: Novel neurotechnologies - This Working Party was established in November 2011 to examine the ethical, social and legal issues arising from the development and impact of 'novel neurotechnologies' that intervene in the brain such as deep brain stimulation and brain computer interfaces. A report is expected to be published in June 2013.

• Current project: Genomics, health records, database linkage and privacy - This project will focus on the ethical issues raised by the use of biological and health data. The Working Party first met in March and will be formally gathering evidence later this year.

• Upcoming project: Children in clinical research­ - This project will focus on the ethical issues raised by the involvement of children and young people in clinical research. It will be chaired by Professor Bobbie Farsides, Professor of Clinical and Biomedical Ethics at the University of Sussex, and is likely to begin in late spring 2013.

• The implications of emerging technology in the diagnosis of dementia
• Exploring the use of emerging technologies to optimise treatment
• Governance related issues in the context of the regulation of emerging technologies in healthcare

• Keynote speech from the Chief Medical Officer and ESBAC’s Senior Responsible Officer, Dame Sally Davies
• ESBAC - background, role and where are we know
• Presentations and discussion on ESBAC’s emerging workplan, including its proposed approach to horizon scanning and how you can contribute
• Networking opportunities