Annual Report 2012

The Nuffield Council on Bioethics means many things. In its narrow incarnation, the formal Council, it brings together a group of highly intelligent, concerned, and committed people to grapple with some of the most important issues confronting our society. The powerhouse is its Secretariat, led by an outstanding Director, Hugh Whittall. They are the face of the Council for most of those who have dealings with it, and especially our international partners who regularly pay tribute to their professionalism and expertise. Our thinking is shaped and informed by members of our working parties, who in turn build on what they learn from those who give evidence to and comment on our projects. In different ways these are all part of the Nuffield Council and what it represents - high quality public discussion and policy formation on ethical issues arising in the biosciences.

This annual report presents our activity during the past year, but also our thinking about what we stand for and who we serve. We have developed a strategic plan that sets out the contributions we hope to make over the next few years and the steps we have already taken to deliver it. We work in a field that matters greatly to us as individuals, and to the societies in which we live. It matters for the future as well as the present.

It is an enormous privilege to be part of that work and in my first year as Chair, it has also been a great pleasure. I am grateful to all those who have been involved with the Council's work and who have made this another successful year. I hope this report gives you a flavour of our work, that you enjoy reading it and that you will continue to engage with issues in bioethics.

Professor Jonathan Montgomery



2012 was again a very busy year for the Council, but it was also a very important one. Having secured our funding for the next five years, and welcomed our new Chair, we mapped out the direction in which we intended to travel and we duly set off in that direction.

The first landmark of the year was the publication of our Strategic Plan for 2012-2016, which followed some extensive discussions with stakeholders from a variety of backgrounds. The underlying message that was reflected in the Strategic Plan was that we needed to build on our solid foundations, looking to reach a wider range of both contributors and audiences, trying out different ways of informing, consulting and engaging people with the issues we address. Already, by the end of 2012, we had developed our processes for identifying new topics, increased our social media activity, and set out more publicly how people can engage at each stage of our work. There is plenty still to be done - indeed development is likely to be continual – but there is a strong feeling at the Council that we are on the right path.

We also published in 2012 two reports that exemplify the different ways in which we can respond to new developments. The report on Novel techniques for the treatment of mitochondrial DNA disorders, published in June, was a short report, prepared by a small working group and responding to a very particular issue where the Council felt that it could make an important contribution to a distinct policy issue. It achieved that, and has given us confidence that we can be relevant, responsive and timely, even when timescales are tight.

The second report, Emerging biotechnologies: technology, choice and the public good, published in December, was at the other end of the spectrum. This took a much wider look at how biotechnologies emerge, and how ethical considerations can be integrated into the research and innovation environment in a way that can help orientate innovation towards socially valuable ends. As such it has less obvious policy ‘deliverables’, but it too has a certain timeliness, and is already contributing to a growing debate in science policy circles about how to make research and innovation systems more responsible, responsive, and ethically informed.

As I write this, we are already into 2013, and the pace of change, externally and internally, still feels relentless. Which is good for us, as it reminds us that we need to keep listening, keep responding and keep adapting. I believe that we are in a good position and frame of mind to do that, and we look forward to the ongoing challenge.

Hugh Whittall

Treatments for mitochondrial DNA disorders using new forms of IVF techniques are being developed but are currently not legally permitted. Should they be allowed? This report looks at the ethical issues in support of an ongoing public debate.



Find out more: www.nuffieldbioethics.org/​mitochondria

Inherited genetic disorders caused by mutations in mitochondrial DNA can cause a wide range of severely debilitating and disabling health problems including heart and other major organ failure, stroke, dementia, blindness or deafness. The onset of these progressive disorders can occur at any age from birth and can cause premature death. There is currently no cure for these conditions.

Techniques are being researched that could prevent the transmission of inherited mitochondrial DNA disorders. This could make it possible for a woman carrying mitochondrial DNA mutations to have a healthy child that is genetically related to her, using healthy mitochondria from a donor’s egg to replace damaged mitochondrial DNA from the mother.

In June 2012 the Council published Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review, exploring the ethical issues relevant to the possibility of using these techniques in treatment. It concludes that:

  • Provided the techniques are proved to be sufficiently safe and effective, and an appropriate level of information and support is offered, it would be ethical for families to use these techniques as treatment.
  • As only a tiny fraction of the donated egg is used, and not the nucleus, it is not legally or biologically accurate to refer to the mitochondrial donor as a mother or 'third parent' of the resulting child.
  • The wider policy debate would benefit from a fuller discussion of the ethics of various possible future therapies for genetic disorders, including heritable effects on the cell nucleus, and therapies involving forms of nuclear transfer.

Chair of the Working Group
Geoff Watts, Science Writer and Broadcaster

4 fact finding meetings

84 responses to the open consultation

11 Working Party meetings

12 Working Party members

New biotechnologies have the potential to deliver huge benefits, but there may also be significant risks. This report looks at how we ensure that decisions about new technologies are geared towards the public good.

Find out more: www.nuffieldbioethics.org/​emerging-biotechnologies

Biotechnologies are significant in many aspects of life, from food and fuel security, to medicine, industry, and economic development. At global and local levels, societies are committed to securing advances in biotechnology, often with high expectations about the impacts that such technologies can deliver for future wellbeing.

However, the emergence of biotechnologies is a complex process; the uncertainty, ambiguity and transformative potential of emerging biotechnologies make it difficult to predict eventual outcomes in the early stages of research or to control them effectively. It is therefore difficult to find a rational basis on which to commit to particular pathways of biotechnology development, which may be at the expense of other technological or social measures that address the same challenges.

In December 2012 the Council published the report Emerging biotechnologies: technology, choice and the public good. The report was intended to stimulate thinking in a variety of contexts in which the conditions that influence the development of biotechnologies are set (including research, policy, regulation and business) and about how those contexts interact. We emphasise the importance of the public interest in biotechnologies, and set out a ‘public ethics’ approach to addressing the challenges that arise within each of these contexts.

Chair of the Working Party
Mick Moran, Professor Emeritus of Government, University of Manchester

12 Working Party members

11 Working Party meetings

4 fact finding meetings

84 responses to the open consultation

Thousands of children are born each year following the use of donated sperm or eggs. This report looks at if, how and when people should be told about the circumstances of their conception.

Find out more: www.nuffieldbioethics.org/​donor-conception

In February 2012, the Council began an inquiry on the ethical issues that arise in connection with the sharing of information in the context of families created using donor eggs, sperm or embryos.

Key questions that are addressed in this report include how the (sometimes conflicting) interests of all the various parties involved in donor conception may properly be balanced; and what role the state, the public sector, or health and social care professionals more generally, should play in what is often seen as the private domain of the family.

During 2012 the Working Party hosted a series of factfinding sessions, involving more than 50 people with personal experience of donor conception, or who work closely with those involved. These meetings aimed to provide a forum where the many different views about these issues could be heard, as part of a wider evidence gathering process undertaken for this inquiry. In addition almost 130 responses were received to a call for evidence held from March to May. We published this report in spring 2013.

Chair of the Working Party
Rhona Knight, General Practitioner and Senior Clinical Educator, University of Leicester

“Between 1,500 and 2,000 children are born from donated gametes each year. In the 1970s and 1980s, doctors advised couples receiving treatment that there was no need to tell. Today openness is encouraged, but it is not enforced.”

The Independent,
April 2012

Brain disorders affect huge numbers of people, but procedures that intervene in the brain are risky. This project looks at the ethical implications of novel neurotechnologies, and will report its findings in summer 2013.

Find out more: www.nuffieldbioethics.org/​neurotechnology

This project is exploring the ethical, social and legal issues arising from novel neurotechnologies such as deep brain stimulation, transcranial brain stimulation, brain-computer interfaces, and neural stem cell therapy.

These technologies are being developed for use in the treatment of conditions arising from degenerative and psychiatric illnesses and brain trauma. In the UK deep brain stimulation is currently used to treat Parkinson’s disease, epilepsy and chronic pain, and in coming years it is expected that the use of novel neurotechnologies will be expanded to treat and assist people living with conditions including stroke, Alzheimer’s disease, depression, multiple sclerosis, obesity, anorexia, obsessive compulsive disorder, tinnitus, brain injury and spinal cord injury. It is thought these neurotechnologies could bring significant therapeutic benefits, especially for those with severe symptoms for whom other treatments have proved ineffective.

Beyond treatment, brain-computer interfaces could be used by paralysed individuals to control assistive devices supporting their everyday lives. Though non-therapeutic uses of novel neurotechnologies are still largely at the research stage, there are interesting developments in this field too. These include applications for military purposes, recreational gaming and exploration of early suggestions that brain stimulation could have cognitive enhancement effects.

The Working Party is focussing on technologies that intervene directly in the brain, either through the use of a device, or by implanting stem cells. These interventions raise fundamental questions about the role of the brain in our self-perceptions and behaviour, the privacy of data collected directly from our brains, and about what the unintended effects of altering brain functions might be. The report will be published in summer 2013.

Chair of the Working Party
Thomas Baldwin, Professor of Philosophy, University of York

“Should we as neuroscientists and clinicians look at the ethics of neurostimulation? We believe that now is a very important time to do so.”

Prof Tipu Aziz
& Mr Alex Green, consultation responders

Two topics that the Council had previously chosen at Forward Look meetings were announced in 2012.

See: www.nuffieldbioethics.org/news​/new-working-party-biodata

Biological and health data

The use of new technologies that facilitate the collection, storing and linking of data has become increasingly important to biomedical research and healthcare, as well as to many of the conveniences of contemporary life. However, new uses of health and biological data relating to distinguishable individuals also hold potentially far-reaching implications for privacy, interpersonal relationships and the relations between individuals and society.

The Council has established a new work theme to examine the ethical issues raised by developments that facilitate the collection, linking, use and exploitation of health and biological data. The Working Party, chaired by Professor Martin Richards, will begin work in spring 2013.

Children and clinical research

Clinical research involving children is essential if children are to receive evidence-based treatments when they are ill. However, concerns inevitably arise as to how children may ethically be involved in research: how the demands of research protocols may be balanced against the duty to protect child participants from unnecessary distress or risk of harm. This project will be considering whether the current systems for regulating clinical research strike the right balance between promoting the understanding of childhood diseases and sufficiently protecting young participants.

A call for expressions of interest was announced on the Council’s website and the Working Party, chaired by Professor Bobbie Farsides, will begin work in summer 2013.

The Council works closely with journalists and reporters to try and ensure balanced coverage of its work in newspapers and other mainstream media such as TV, radio and magazines. We also seek opportunities to contribute to editorials, journals and trade press relevant to each of our topics.

In 2012 we increasingly produced and communicated our own news directly to the online public through our website, social media channels, newsletter and our new blog which launched in September 2012.

“Complex issues have to be set out in a manner comprehensible to readers ….This body of evidence emphasises the need for balanced and responsible reporting on matters of public interest and, in particular, reporting that reflects the balance of scientific and/or medical opinion on any specific issue.”

The Leveson Report into the Culture, Practices and Ethics of the Press November 2012

The Council’s educational initiatives aim to promote and facilitate structured and informed discussions and debates on contemporary bioethical issues.

Teaching resources

The Council produces teaching resources on the topics covered in its reports. These are available online from the Council’s website and other content sharing sites such as the TES website. A survey to gather feedback on the resources was completed in July 2012.

Box Office Bioethics

The first season of Box Office Bioethics, the Council’s student film competition, was completed in 2012. The winning teams received £200 gift vouchers and the commended films were screened at the Council's annual public lecture in May and featured on the Council’s website.

Working with Y Touring

The Council acted as an advisory partner during development of the Y Touring Theatre Company’s new production ‘Stunted trees: broken bridges’. The play tours in early 2013 and explores questions raised for personality, identity, responsibility and liberty, by progress in neuroscience.


Find out more: www.nuffieldbioethics.org/education
Photo credit: Bob Workman

The Council runs its own events and contributes to conferences and events of other organisations in order to gain face-to-face interaction with as wide a range of people as possible.

In 2012, we organised events to launch our reports on mitochondrial DNA disorders and emerging biotechnologies; combined our annual lecture with the first ever Box Office Bioethics prize giving and screening; hosted sessions on organ donation at the Cheltenham Science Festival and on biofuels at the Edinburgh International Science Festival; and gave presentations at a wide range of conferences in the UK and further afield.

Box Office Bioethics winners at the 2012 Annual Lecture

The Council is committed to maintaining a leading role in the international bioethics community, to both support and inform international dialogue and agenda-setting, but also to help ensure that the Council’s work reaches out into the world where science, ethics and governance are increasingly global activities.

The Council frequently meets with the bioethics commissions of other countries. In 2012, we held meetings with the French, German and Italian commissions and hosted events at the Global Summit of National Ethics Committees in Tunisia and the 11th World Congress of Bioethics in Rotterdam.

Following the completion of a wide ranging strategic review, a Strategic Plan for the period 2012 – 2016 was published.

Find out more: www.nuffieldbioethics.org/strategic-plan

The plan sets out a number of objectives across five broad aspects of Council business - our people, our work programme, our audiences, our partnerships and our business management. It outlines the specific ways in which we will address our key priorities, in line with the outcomes of our review, over the coming years. Areas that have been identified for development include:

  • Diversity of input, ensuring that as wide a range of people as possible are able to contribute to our work.
  • Ensuring a wide reach so that both the policy impact and promotion of public debate is maximised.
  • Making sure our processes and decision making are transparent, enabling stakeholders to see how we operate and how people can interact with our work
  • Evaluation of the quality, reach and impact of our work.

Financial Report for the year to 31 December 2012 (unaudited)

2012 2011
Actual Actual
£ £
Expenditure
Salaries and staffing costs 608,380 560,111
Reviewers' and consultants fees 31,131 26,359
Office and premises costs 3,063 6,106
Journals & Subscriptions 15,934 23,366
Travel and meeting costs 81,093 110,273
Web, Printing and Publicity 29,133 71,960
Total Expenditure 768,734 798,175
Funding Due
Nuffield Foundation 273,405 186,905
Medical Research Council 273,405 186,905
Wellcome Trust 273,405 186,905
Other 1,695 1,334
821,910 562,049
Overheads met by Nuffield 536,193 443,995

The Council’s mission is to promote and to support public discussion and to inform policy through identifying and exploring ethical issues arising in the biosciences. We aim to help ensure that policy is informed by the best possible consideration of ethical implications through carefully reasoned analysis of important current issues arising out of bioscientific research.


Find out more: www.nuffieldbioethics.org/informing-policy

The Council engages with government officials, parliamentarians and others to inform policy and promote debate about bioethics. We perceive our independence as critical to our reputation for offering balanced, considered advice and to help maintain public trust in our work.

The Council meets regularly with the UK Department of Health to exchange information about current and future work, and is represented by its Director as an ex officio member of the Department’s new expert advisory group, the Emerging Science and Bioethics Advisory Committee (ESBAC), set up in 2012.

Policy influence

Measuring direct impacts on policy can be challenging, not least because of the time it often takes for policy changes to come about. Nevertheless, over the years the Council has built a sound reputation for significant contributions to the development of bioethics in public policy, and this section provides some specific examples of policy influence that the Council achieved in 2012:

  • The ethical principles proposed by the Council in its 2011 report Biofuels: ethical issues were strongly reflected in the ‘Bioenergy principles’ set out in the Government’s UK Bioenergy Strategy in April 2012. Our ethical principles also formed part of the Technology Strategy Board’s Responsible Innovation Framework for commercialisation of research findings, published in October 2012.
  • The Government’s proposals for a new system of consistent front-of-pack food labelling follows the Council’s recommendation in its 2007 report Public health: ethical issues that the food industry should take a more active role in responding to the problem of obesity and provide universal, readily understandable nutrition labelling based on what is shown through research to be the most effective labelling scheme.
  • The World Health Organization’s report Dementia: a public health priority highlighted key elements of the Council’s ethics framework for dementia. The report referenced a number of the Council’s conclusions including that dementia, and people with dementia, should become an accepted and visible part of society. The Prime Minister’s ‘Dementia Challenge’ notably included a pledge to recruit 1 million ‘Dementia Friends’ – again echoing the need to make society more inclusive of people with dementia and to enable them to participate in everyday life as much as possible.

Reports and Working Parties
Reports published to date 25
Reports published in 2012 2
Reports published 2008-2011 5
Active Working Parties at end of 2012 2
Media coverage
2012 Mean average per year 2008-2011
No. of broadcast interviews 10 28
No. of online & print articles:
UK national press
Other (incl national and international online media)

27
907

29
272
Articles written by Council representatives 12 19
Website & social media statistics
2012 2011

2010 1

Visits to the website 162,701 121,476 81,325
Page views 797,366 666,072 355,209
No. countries with more than 100 visits 71 60 49
Subscribers to e-newsletter 2702 2280 1797
Twitter followers 2,424 1,571 1,000

Blog posts 2

9

Visits to the blog website 3

787

1 Comparable data not available prior to 2010

2 Blog started on 20 September 2012

3 Data from 20 September – 31 December 2012

Presentations at conferences and events
2012 Mean average per year
2008-2011
No. of events where presentations were given by Council representatives 41 47
Consultations
2012 Mean average per year
2008-2011
Number of consultations held by the Council 3 1
Responses received to the Council’s consultations 282 154
Responses submitted by the Council to the consultations of other organisations 8 11
Academic citations
2012 Mean average per year
2008-2011
Papers or books citing Nuffield Council on Bioethics 447 411

Professor Jonathan Montgomery
(Chair from March 2012)
Professor of Health Care Law, University of Southampton and Chair, Hampshire Primary Care Trust

Professor Albert Weale
(Chair until March 2012)
ESRC Professorial Fellow & Professor of Political Theory and Public Policy, University College London

Professor Ottoline Leyser
(Deputy Chair from March 2012)
Professor of Plant Development and Associate Director, Sainsbury Laboratory, University of Cambridge

Professor Hugh Perry
(Deputy Chair until March 2012)
Professor of Experimental Neuropathology, University of Southampton

Professor Thomas Baldwin
Professor of Philosophy, University of York. Co-opted member of Council while chairing the Council’s Working Party on novel neurotechnologies

Professor Steve Brown
(until June 2012)
Director, Medical Research Council Mammalian Genetics Unit, Harwell, Oxfordshire

Dr Amanda Burls
Director, Postgraduate Programmes in Evidence-Based Health Care, and Senior Fellow, Centre for Evidence-Based Medicine, University of Oxford

Professor Robin Gill
Professor of Applied Theology, University of Kent

Professor Sian Harding
Professor of Cardiac Pharmacology, National Heart and Lung Institute, Imperial College London

Professor Ray Hill
Retired 2008. Previously Head of Licensing and External Research for Europe, Merck, Sharp and Dohme

Professor Søren Holm
(until June 2012)
Professor of Bioethics, University of Manchester and part-time Professor of Medical Ethics, University of Oslo, Norway

Dr Rhona Knight
General Practitioner and Senior Clinical Educator, University of Leicester. Chair of the Council’s Education Advisory Group and Working Party on donor conception.

Professor Graeme Laurie
Professor of Medical Jurisprudence, University of Edinburgh, and Director of the Arts and Humanities Research Council Research Centre for Studies in Intellectual Property and Technology Law

Dr Tim Lewens
Reader in Philosophy of the Sciences, Department of History and Philosophy of Science, and Fellow of Clare College, University of Cambridge

Professor Anneke Lucassen
Professor of Clinical Genetics and Honorary Consultant Clinical Geneticist, University of Southampton Cancer Sciences Division and the Wessex Clinical Genetics Service

Professor Michael Moran
Professor Emeritus of Government, University of Manchester. Co-opted member of Council while chairing the Council’s Working Party on emerging biotechnologies

Professor Alison Murdoch
Professor of Reproductive Medicine, Consultant Gynaecologist and Head of the NHS Newcastle Fertility Centre at Life

Professor Bronwyn Parry
Professor of Social Science, Health and Medicine at King's College London

Professor Nikolas Rose
Professor of Sociology and Head of Department of Social Science, Health and Medicine, King’s College London

Dr Geoff Watts
Science and medical writer and broadcaster. Chair of the Working Group on mitochondrial donation

Professor Jonathan Wolff
Professor of Philosophy, University College London

Hugh Whittall
Director

Dr Alena Buyx
Assistant Director (until June 2012)

Dr Peter Mills
Assistant Director

Katharine Wright
Assistant Director

Emily Postan
Project Leader, Novel neurotechnologies (from July 2012)

Laura Riley
Project Leader, Mitochondrial donation: ethical issues (until June 2012)

Carol Perkins
PA to the Director and Secretariat Administrator

Catherine Joynson
Communications Manager (on maternity leave from April 2012)

Sarah Walker-Robson
Communications Officer (Acting Communications Manager from April 2012)

Ranveig Svenning Berg
Communications Officer (from May 2012)

Rosie Beauchamp
Research Officer (from September 2012)

Tom Finnegan
Research Officer

Kate Harvey
Research Officer

Varsha Jagadesham
Research Officer (until August 2012)

Johanna White
Office and Communications Administrator

Michael Campbell
Intern (July - August 2012)

Victoria Charlton
Intern (July 2012)

Nuffield Council on Bioethics
28 Bedford Square, London WC1B 3JS

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Email: bioethics@nuffieldbioethics.org
Website: www.nuffieldbioethics.org

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© Nuffield Council on Bioethics 2013