Annual Report 2013

NOTE FROM THE CHAIR

The pace of scientific and biomedical developments may sometimes leave us wondering if ethics can really keep up. In these rapidly advancing fields, the role of the Nuffield Council on Bioethics is extremely important. One of the strengths of the Nuffield Council on Bioethics is its ability to deliver comprehensive and authoritative advice on bioethics issues that really matter to people, at the right time. Part of the reason we can achieve this is through the valuable contributions of the many people we involve in our work.

In 2013 alone, hundreds have sent in views to our consultations (on biodata and on children and research), and many more have attended our fact finding meetings that feed into the development of these reports and more again have reviewed the reports in detail prior to publication, including independent peer reviewers, the Working Parties and of course our members of Council. In line with our strategic commitments of transparency and flexibility, we have also invited people to suggest future topics that the Council might consider looking into and to comment on our evolving list of possible future work.

Significantly, this was a year of high turnover of Council members. We recruited several new additions, we are delighted to welcome them and look forward to more of their fresh and insightful contributions over the coming years. Conversely, we were sorry to lose no less than seven members of Council who finished their terms in 2013, I thank them warmly for all they have given to the Council, it is hard to imagine how the Council could have made the progress it has in the last six years without each and every one.

When we start counting, it becomes apparent just how many people contribute to and support the work of the Council, at all stages of our projects, and I would like to take the opportunity to thank them all. Especially I would like to thank the members of the Council and the staff of the secretariat who continually drive forward the Council’s work in new and exciting ways with the greatest respect for the rigour and independence that the Council has built its reputation upon. I hope you enjoy reading about some of the new ventures we have undertaken in 2013 in the following pages of this review.


Professor Jonathan Montgomery
Chair

NOTE FROM THE Director

The issues that we have to grapple with in the realm of bioethics seem not to have diminished in number, but nor have they diminished in complexity. On the contrary, whether it is through developments in genomics, data science, neuro- or bio-technologies, or various combinations of these, the complexity of scientific progress in the coming years is going to be challenging. But underlying it are the clear and persistent issues that we should all continue to address - health inequalities; the effects of climate change; and the prevalence of disorders such as dementia, obesity and poor mental health, etc.

In the face of this complex challenge it seems to me that we can help ourselves by keeping a few guiding thoughts in mind. First, we must continue work across disciplines and across sectors to gain insight into what is coming and what it entails, and to ensure good communication and collaboration between the life sciences, social sciences and humanities, whilst fully involving civil society.

Second, we should not isolate ‘bio’ from other concerns, as the conjunctions between ‘bio’ and ‘non-bio’ are increasingly important. In the same way, what is ‘medical’ has changed, extending not only to predictive and preventive interventions, but also blurring the boundaries into what might be called health optimisation or enhancement.

And developments readily cross sectors, so that ‘health’ technologies can extend into other fields such as industrial, leisure, environmental and agricultural sectors.

Third, we must continue to engage an ever wider public. New technologies emerge in social contexts, and it is essential that we encourage public discourse so that we can understand that context and engage the whole of society in considering their concerns, priorities and responses.

And finally, we must continue to work globally – developments in the biosciences can travel rapidly, and accordingly we should share widely our reflections on their ethical dimensions. This means talking and listening, working together to gain common insights and approaches where appropriate. It can also mean supporting and helping develop the capacity of others to reflect on bioethical issues. In any event, it should mean helping ensure that the benefits of scientific development are widely and fairly distributed.

Complexity can be difficult, but it need not be daunting, especially if are willing to share, cooperate and engage.


Hugh Whittall
Director

Donor conception: ethical aspects of information sharing

This report considers the interests of people affected by donor conception and addresses ethical questions around if, how and when donor-conceived people should be told about their origins.

Since the introduction of regulation in 1991, over 35,000 donor-conceived children have been born in the UK as a result of their parents having treatment in a licensed clinic. In addition, many donor-conceived people are born as a result of private, unlicensed sperm donation, or of treatment in overseas clinics.

In the UK, people conceived with donor gametes through licensed clinics since April 2005 will be able to find out who their donor is when they turn 18. Those conceived between 1991 and 2005 can get some information, but can’t find out who the donor is, unless their donor has chosen to be identified. People conceived before 1991 cannot access information via official routes but may be able to get some information from the clinic or through joining the voluntary Donor Conceived Register.

In April 2013 the Council published Donor Conception: ethical aspects of information sharing which examines the interests of all those affected - donor-conceived people, parents, donors, and all their wider family and social networks – and makes recommendations about what can be done to support, encourage and empower those making decisions about sharing information.

Conclusions and recommendations include:
  • Evidence suggests that although donor-conceived people are increasingly being told about their origins, many parents do not tell, despite being widely encouraged to do so
  • Parents of donor-conceived children should be the ones to decide what to tell their children about their conception, but they need more support in making and following through this difficult decision
  • The Government has an ethical responsibility to ensure that appropriate support is available for donor-conceived people, their families and donors where needed
  • Fertility clinics should step up the level of counselling and support offered to prospective parents, new parents and potential donors
  • There should be a public information campaign highlighting that it is possible for past donors who originally donated anonymously to re-register to make themselves identifiable


Follow up

The Human Fertilisation and Embryology Authority (HFEA) has agreed to work towards many of the Council’s recommendations as part of their Donation Work Programme for 2013-2105, such as:
  • Exploring models for counselling and intermediary services for Register applicants and specialist support for other people affected by donation
  • A programme of work to look at how to help donors provide information about themselves and to support clinics in sharing information with recipients
  • A dedicated donation website including information about donor re-registration

6

Working Party meetings

8

Working Party members

10

Fact finding meetings

15

External reviewers

130

Responses to the call for evidence


Chair: Rhona Knight, General Practitioner and Senior Clinical Educator, University of Leicester

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

Novel neurotechnologies: intervening in the brain

New technologies that ‘intervene’ in the brain could help people with serious disorders, but they may cause unintended harms. This report looks at how we can harness the benefits and minimise the possible harms of these technologies.

In the UK hundreds of thousands of people are living with severe brain conditions such as dementia, Parkinson’s disease, stroke, and depression. Technologies including brain stimulation, neural stem cell therapies and brain-computer interfaces offer the potential to help alleviate debilitating symptoms of these conditions.

However, there is not yet enough evidence about how effectively these technologies work, or a complete understanding of exactly how the brain functions. The lack of clear evidence about the ratio of risks to benefits presents challenges to responsible decision-making about patient care, both in treatment and in research. Meanwhile, these neurotechnologies are also being investigated for possible uses in enhancement, gaming and military settings.

In June 2013 the Council published Novel neurotechnologies: intervening in the brain which sets out an ethical framework to guide the practices of those involved in development, regulation, use and promotion of novel neurotechnologies.

Conclusions and recommendations include:
  • We need smarter regulation that fosters innovation whilst recognising the complexity of the brain and prioritising the delivery of safe and effective treatments for patients in need
  • More could be done to bring together and make the most of existing evidence from research and new treatments, such as the creation of publically accessible registers of information
  • Counselling should be routinely provided for patients considering the most invasive forms of treatments that require surgery
  • Media communications have a huge influence on public expectations, so those involved in communicating the possible uses of neurotechnologies must exercise responsibility by not raising false hopes and unrealistic expectations about their potential.

Follow up

The Council organised a workshop in December 2013 to discuss the development of clinical registries to improve the evidence base for brain stimulation treatments. The workshop brought together clinicians and those with experience of setting up other clinical registries with members of the British Society for Stereotactic & Functional Neurosurgery who are currently involved in setting up a registry for Deep Brain Stimulation. The Council will remain involved in tracking and supporting progress on this issue.

10

Working Party meetings

11

Working Party members

12

External reviewers

15

Fact finding meetings

60

responses to the open consultation


Chair: Thomas Baldwin, Professor of Philosophy,
University of York

Find out more: www.nuffieldbioethics.org/neurotechnology

Children and clinical research

How can children ethically take part in research? This report will be published in spring 2015.

Clinical research involving children is essential if we are to improve our understanding of childhood diseases and conditions, and provide the best possible care. But whilst adults may choose to undergo inconvenience, discomfort and potential risks that may be involved in clinical research, it is much harder for parents and others to make such decisions on behalf of their children. There is little consensus on what part children themselves should play either in decisions about their own research involvement, or in wider questions of how research is promoted and regulated.

In May 2013 the Council began an inquiry on the ethical issues arising from children taking part in clinical research. The Working Party held several fact finding sessions and ran an open call for evidence from August to October 2013 to which more than 190 responses were received.

Special efforts have been made to include and involve young people from the outset of this project:

  • A stakeholder event that brought together young people and parents with researchers and medical professionals was held at an early stage of the project
  • The open call for evidence included a survey aimed at young people
  • The Council has collaborated with researchers from the Universities of Sussex and Nottingham and the Institute of Education to develop a pilot youth research ethics committee (REC) project, launched in spring 2014

Follow up

Chair: Bobbie Farsides, Professor of Clinical and Biomedical Ethics, Brighton and Sussex Medical School

Find out more: www.nuffieldbioethics.org/children-and-research

Biological and health data

In March 2013 the Council began an inquiry on the ethical issues arising from the collection, linking, analysis and use of biological and health data.

Increasing accumulations of health and biological data, including 'big data' generated by technologies such as genome sequencing and imaging, combined with advances in technology (e.g. cloud computing) and data science (analytics) are opening up new opportunities for understanding health and disease, and improving treatments for patients and populations. These opportunities, and the strong incentives to pursue them, however, throw up new challenges for existing systems of governance that exist to protect the privacy of individuals while securing public benefits. Anonymity is increasingly difficult to achieve at the same time as science pursues the benefits of data sharing and open data; patients' and research participants' knowledge of, or control over, the use of personal data becomes more difficult as those data are distributed, linked and reused.

During 2013 the Working Party held a series of fact finding meetings with key stakeholders and experts, focusing on privacy and data control, cross-border governance, market economics, and screening and risk-profiling. An open consultation ran from October 2013 to January 2014, to which more than 50 responses were received from organisations and individuals. The final report will be published in December 2014.

Key questions that are addressed in this report include:
  • How might developments in the collection and storage of data, and linking with other data sources (such as social or administrative data) affect the scope of benefits, harms and uncertainties facing individuals?
  • What do they mean for the protection of privacy and the pursuit of common interests?
  • What implications do they have for the governance of biological and health data, biobanks and data repositories?

Chair: Martin Richards, Emeritus Professor of Family Research, University of Cambridge

Find out more: www.nuffieldbioethics.org/biodata

More from our blog


‘Big data’ raises big questions for biomedicine
Published October 2013

The culture of scientific research

This project is exploring how the different features of the research environment are affecting, both positively and negatively, the work and behaviour of UK scientists at different stages of their careers.

Scientific research is increasingly professional, interdisciplinary, multi-institutional, globally competitive and technologically advanced. This presents exciting opportunities to further scientific understanding, but some elements of current research culture may be undermining efforts to maintain ethical conduct in science and produce high quality, valuable, accessible research.

For example, competition for funding, for publication in the top journals, and for jobs and promotions, can spur excellence and raise standards. But what are the effects of a competitive culture on the kinds of research that is prioritised, funded and published, on willingness to share ideas and data, and on the behaviour of researchers?

Within a competitive environment, researchers and their research must be assessed by, for example, institutions, funders and journals. Are the current systems of assessment encouraging ethical conduct and the production of high quality research?

Guided by commitments in our Strategic Plan to be more flexible in our work, the primary focus of this project is on gathering the views and experiences of people involved in scientific research in the UK, and promoting debate. A Steering Group was set up in 2013 to oversee the project, which is being co-ordinated by the Nuffield Council on Bioethics and includes representatives of the Royal Society, Society of Biology, Institute of Physics and Royal Society of Chemistry.

What’s next?


Activities planned for 2014 include an online survey, stakeholder meetings and a series of discussion events at universities around the UK.

The findings of these activities will be published and presented to policy makers towards the end of 2014, following which the Council will consider whether to examine and report on the issues in more depth.

Forward Look

In May 2013 the Council held a Forward Look seminar to discuss four possible future topics.

  • Aesthetic/cosmetic procedures
  • Expensive life-extending treatments
  • Medical tourism and cross-border care
  • Scientific research integrity

To inform the discussions, guest speakers were invited and external experts were commissioned to produce briefing papers on each of the four topics.

Subsequently, the Council decided to take forward two new areas of work:

  • The culture of scientific research (arising from the Forward Look paper on scientific research integrity). See the previous section for further information.
  • The ethics of cosmetic procedures. In January 2014 the Council convened a scoping workshop to help explore the major ethical and societal questions raised by the increasing use of cosmetic procedures. The Council expects to take a programme of work on this topic forward in 2015.

Find out more: www.nuffieldbioethics.org/forward-look-archive

Informing Policy

The Council aims to inform policy discussions and decision-making through contributing balanced and thorough analyses of bioethical issues and carefully considered recommendations. We regularly meet with government officials, parliamentarians and others to promote debate about bioethics, exchange information about current and future work and influence policy. We perceive our independence as critical to our reputation for offering authoritative advice and to help maintain public trust in our work.

In 2013 we circulated briefing papers for MPs and Peers on the provision of information regarding donor conception and on the regulation and use of novel neurotechnologies. We submitted responses to major Government and Parliament consultations including the Human Tissue Authority Code of Practice on organ and tissue donation in Wales and the National Assembly Consultation on the Draft Human Transplantation Bill, the House of Lords Call for Evidence on the Mental Capacity Act, and the Home Office Consultation on the early deletion of DNA and fingerprint records.

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

POST Fellowship

The Council is sponsoring a new bioethics Fellowship based at the Parliamentary Office of Science and Technology (POST), with the aim of promoting informed debate of bioethics among Parliamentarians. A fellow will be appointed for a three-month period each year from 2014 - 2016.

The Fellowship is open to PhD students studying a bioethics-related subject at a UK university who are in their penultimate or final year of part-time or full-time study. The Fellow will gain first-hand experience of the workings of Parliament and will be asked to produce a briefing note on an area of public policy that raises bioethical issues.

Find out more: www.nuffieldbioethics.org/news/bioethics-fellowship-parliamentary-office-science-and-technology

Previous reports: follow up and influence highlights

Emerging biotechnologies: technology, choice and the public good (published December 2012)

During spring and summer 2013 the Council held three follow-up workshops involving a range of academic practitioners and policymakers. These workshops were designed to explore how lines of thought initiated in this report intersect with current debates that cut across specific operational contexts. Each of these workshops covered a specific theme of the report:

  • Biotechnologies and the public sphere: citizen engagement and the engaged citizen
  • Beyond dirigisme and laissez faire: bringing public values into biotechnology innovation
  • Biotechnology research and the public good: the public role of researchers

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

Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review (published June 2012)

In June 2013 the Department of Health announced plans to draft regulations (which were subsequently published in March 2014) that pave the way for the use of new treatments to prevent the transmission of inherited mitochondrial DNA disorders.

This announcement came approximately one year after the Council’s report concluded that these novel techniques offer an ethically acceptable treatment option for families affected by mitochondrial disorders, provided further research shows they are likely to be sufficiently safe and effective, and that families are offered appropriate information and support. In March 2013 the HFEA reported the findings of their public consultation, which chimed with these conclusions of the Councils’ report, to the Government.

Find out more: www.nuffieldbioethics.org/mitochondria

Human bodies: donation for medicine and research (published October 2011)

The Council contributed written responses and verbal evidence to the consultation process for the Human Transplantation (Wales) Act, which was passed by the National Assembly for Wales in July 2013. It introduces a soft opt-out system for consent to deceased organ and tissue donation for Wales from December 2015. The responses were based on the Council’s conclusion that an opt-out system is not unethical in principle, providing families continue to have the opportunity, without pressure, to express their views on what the deceased person would have wanted and whether donation would cause the family significant distress.Council Member Tim Lewens and Assistant Director Katharine Wright were then invited to contribute to the draft of the HTA consultation on the subsequent Code of Practice. It was clear from the final consultation document that that these comments were taken on board, the Council then officially responded to the consultation.

The Council also participated in the 2012-2013 ‘STRATUM’ project, co-funded by the Technology Strategy Board and industry. The aim was to optimise the use of donated biological samples in biomedical research by creating standardised policies across biobanks. As a result of Council staff involvement, the ethical values highlighted in the Human Bodies report (in particular the notion of donors as ‘partners’ in a joint endeavour research, and the importance of trust in the system) are identified in the materials as ‘high level policy principles’ that participating biobanks should follow.

Another of the recommendations in this report was that the NHS should trial paying the funeral costs of organ donors. Subsequently, the Scottish Government’s strategy for organ donation ‘A donation and transplantation plan for Scotland 2013 – 2020’, published in July 2013 includes a recommendation that the Scottish Government should undertake a full public consultation on potential approaches to increasing organ donation in Scotland. Amongst a number of specific issues put forward for consultation is the idea of financial contributions to funeral costs of donor families.

Find out more: www.nuffieldbioethics.org/donation

Biofuels: ethical issues (published April 2011)

Two recommendations from this report were relevant to an EU Parliament vote on biofuels in July 2013: that policy makers should incentivise research and development of new biofuels technologies that need less land and other resources; and that biofuels policies should take into account the possible greenhouse gas emission savings over the whole production lifecycle of biofuels, but taking into account the complexities associated with calculating and determining indirect land use change (ILUC) factors. The Environment, Public Health and Food Safety Committee of the European Parliament voted to reduce the amount of transport fuel derived from food-based renewable sources in the EU. MEPs voted in favour of draft legislative measures which propose to:

  • limit to 5.5% the use of food-based biofuels counting towards the 10% target for renewable energy use in transport, set in the Renewable Energy Directive
  • set a target of 2% for transport energy derived from advanced biofuels with no or low indirect land use change (ILUC) emissions, rather than from biofuels made from food crops
  • include ILUC factors in accounting for greenhouse gas emissions arising from changing patterns of land use owing to the cultivation of crops for biofuels

The ethical framework from this report was also used as the basis for the Technology Strategy Board’s Responsible Innovation Framework, used in the first instance, in their synthetic biology competition.

Find out more: www.nuffieldbioethics.org/biofuels

Dementia: ethical issues (published October 2009)

The Council was involved in an NHS England initiative, led by Alastair Burns, the National Director for Dementia, on timely diagnosis. ‘Timely’, rather than ‘early’ diagnosis was highlighted in this report as the preferred policy aim, leading to a public consensus statement on this issue in July 2013.

The Council’s report has been discussed and used by policy officials in all four UK Health Departments’ dementia strategies. The Alzheimer’s Society Dementia Friends initiative aiming to improve public knowledge and understanding of dementia and to help create more ‘dementia friendly’ communities was launched in 2013, four years after the Council’s conclusions that as a society we have an ethical obligation to become more inclusive of people with dementia, and there is a need for everyday services to adapt to the needs of those living with the condition.

In May 2013 the Government published a mandate to Health Education England (HEE) that sets out plans for educating and training all NHS staff to improve patient care, including for patients with dementia. The mandate – which lasts from April 2013 to March 2015 – includes a provision that “all NHS staff that look after patients with dementia will complete a dementia awareness programme” and will receive foundation-level training. These plans are in line with recommendations highlighting the importance of ongoing education, training, and support to help people with dementia and their carers tackle dilemmas they may face in day-to-day life.

Find out more: www.nuffieldbioethics.org/dementia

Public health: ethical issues (published November 2007)

An October 2013 a Local Government Association briefing paper titled, 'Changing behaviours in public health - to nudge or to shove?' highlights the Council’s Intervention Ladder as a spectrum of reference for decision-making in public health interventions. The paper explains to local government how behavioural change interventions (‘nudges’) can help local authorities fulfil their public health responsibilities.

Find out more: www.nuffieldbioethics.org/public-health



Education

The Council promotes and supports informed discussions about bioethical issues through a variety of educational resources and collaborations.

Teaching resources

In April 2013 a new set of teaching resources was published, based on the Council’s report Human bodies: donation for medicine and research, which considers the ethical acceptability of various ways of encouraging people to donate parts of the body for treatment and for research. This set of teaching materials is designed for use with students at Key Stage 4 and equivalent. It provides an introduction to organ and tissue donation, looks at different levels of intervention to encourage people to donate, and explores the meaning of ethical values that are often used in the context of donation. It also includes case studies and links to other resources for further discussion. These resources, and the Council’s teaching resources on five other bioethics topics, are available to download from the Council’s website and through other online resource centres such as TES Connect.

Fun Kids Radio collaboration A new collaboration for 2013 was 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 bioethics issues including biofuels, GM crops, and infectious diseases. The series was broadcast on Fun Kids throughout winter 2013-2014 and the podcasts are available to download.

Y-touring
The Council acted as an advisory partner on the Central YMCA’s Y Touring Theatre Company play ‘Stunted Trees and Broken Bridges’. This play explored the ethical and social impact of developments in neurotechnology. Several members of the Council’s Working Party on novel neurotechnologies were on the advisory group for the play, which toured schools and venues in spring 2013. The play is followed by a live debate between the actors in character and the audience supported by the use of electronic voting.

Find out more: www.nuffieldbioethics.org/education

News and media

Mainstream media such as newspapers, radio, television, magazines and journals, remain some of the most important ways for the Council to communicate widely about contemporary bioethics issues and to present its views.

In 2013 media briefings were held at the Science Media Centre in London to launch major reports on donor conception and on novel neurotechnologies. Our spokespeople took part in 30 broadcast interviews and the Council was quoted in, or named in 25 UK national press articles, 147 UK local press articles and 159 online articles (including UK and international online media outlets).

The Council has strengthened its online audiences though increased use of the website, blogging, social media and newsletters to communicate frequently and directly with its followers. In addition to 32 news stories about current and previous projects being published on the website, Council staff and members and commissioned guests contributed 26 blog posts on a range of topics and policy issues for the Council’s Nuff’ said blog. Subscriptions to the Council’s UPDATE newsletter continued to increase with around 3,500 people signed up by the end of 2013.

Find out more: www.nuffieldbioethics.org/news

Events

Events are a vital part of the Council’s programme, allowing us to meet as wide a range of people as possible, facilitate in-depth discussions about controversial issues and to hear first-hand what people really think about the issues that we cover.

Highlights of events organised by the Council included the Annual Lecture, ‘Freedom of Speech, Scientific Freedom and Public Safety: A two pipe problem with a dual remedy solution’ by Professor John Harris, and public launch events for both the donor conception report in April, and the novel neurotechnologies report in June.

The Council also ran an event on donor conception at the Cheltenham Science Festival and in a new venture for 2013, hosted a stall at the Bloomsbury Festival to spread the word about the Council’s work. In total, Council representatives gave 29 presentations at a variety of events and locations including conferences, universities and schools, Parliamentary events, public events and seminars.

Find out more: www.nuffieldbioethics.org/events

International engagement

Council members and staff participate in a wide range of international meetings and activities and we have close links with other ethics bodies abroad, especially those in the European Union. For example, the Council is an active participant in the EU’s annual forum of National Ethics Committees and regularly meets with the French and German National Bioethics Commissions to discuss bioethics topics of mutual interest and share best practice.

The Council’s international influence in the bioethics arena is exemplified by its Director being a member of the Steering Committee for the biennial Global Summit of National Ethics Committees, taking place in Mexico in June 2014. The Council also attends and presents its work at the biennial World Congress of Bioethics.

In 2013 Council representatives were invited to present the findings of the novel neurotechnologies report to the Swedish National Council on Medical Ethics and to the Presidential Commission for the Study of Bioethical Issues in the USA, to discuss the donor conception report and other work, with the Danish Parliament’s Select Committee on Health and to present the Emerging Biotechnologies report to the European Group on Ethics.

Find out more: www.nuffieldbioethics.org/international

Network of affiliates

The Council has established a voluntary network of affiliates, consisting of former Council Members, Working Party Members and staff. The network provides a source of information and dissemination both into and from the Council, with the aim of addressing a key strategic goal of increasing the diversity of input into our work, maximising dissemination opportunities and promoting wider public debate on bioethical issues. We also hope that this network will help to ensure that the Council‘s work continues to be relevant to and have an impact on policy making and public engagement with bioethics.









Summary of outputs

Reports and Working Parties

Reports published in 2013 2
Reports published to date 27
Reports published 2010-2012 6
Active Working Parties and projects at end of 2013 3

Media coverage

2013 Mean average per year 2010-2012
No. of broadcast interviews 30 31
No. of online & print articles: UK national press 25 26
Other (incl national and international online media) 306 616
Articles written by Council representatives 7 17

Website & social media statistics

2013 2012 2011 2010
Visits to the website 180,548 162,701 121,476 81,325
Page views 749,974 797,366 666,072 355,209
No. countries with more than 100 visits 79 71 60 49
Subscribers to e-newsletter 3058 2702 2280 1797
Twitter followers 3413 2424 1571 1000
Blog posts 28 9 n/a n/a
Visits to the blog site 4603 787 n/a

Presentations at conferences and events

2013 Mean average per year 2010-2012
No. of events where presentations were given by Council representatives 32 46

Consultations

2013 Mean average per year 2010-2012
Number of consultations held by the Council 2 2
Responses received to the Council’s consultations 240 189
Responses submitted by the Council to the consultations of other organisations 4 9

Academic citations

2013 Mean average per year 2010-2012
Papers or books citing Nuffield Council on Bioethics 538 430

Financial report

Financial Report for the year to 31 December 2013 (unaudited)

2013
Actual
£
2012
Actual
£
Expenditure:
Salaries and staffing costs 572,611 608,380
Reviewers' and consultants fees 35,120 31,132
Office and premises costs 4,924 3,063
Journals & Subscriptions 14,957 15,934
Travel and meeting costs 75,535 81,093
Web, Printing and Publicity 55,170 29,133
Total Expenditure 758,317 768,735
Funded by:
Nuffield Foundation 252,532 255,680
Medical Research Council 252,532 255,680
Wellcome Trust 252,532 255,680
Other 721 1,695
758,317 768,735
Five year Funding 2012-2016 £
Medical Research Council 1,435,896
Wellcome Trust 1,435,896
The Nuffield Foundation 1,435,896
4,307,688
Amount Drawn
Year ending 31 December 2012 768,734
Year ending 31 December 2013 758,317
1,527,051
Outstanding Funding 2014-2016 2,780,637

Council membership

Members of Council during 2013

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

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

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 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

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


New members of Council appointed in 2013

Professor Martin Richards (from January 2013)
Emeritus Professor of Family Research, University of Cambridge. A co-opted member of Council while chairing the Council’s Working Party on biological and health data.

Professor Peter Furness (from March 2013)
Consultant pathologist, Leicester General Hospital and and Honorary Professor of renal pathology, University of Leicester.

Professor Erica Haimes (from March 2013)
Professor of Sociology at Newcastle University and Founding Executive Director of PEALS (Policy, Ethics and Life Sciences) Research Centre

Professor Julian Hughes (from March 2013)
Consultant in Psychiatry of Old Age in Northumbria Healthcare NHS Foundation Trust, Honorary Professor of philosophy of ageing at the Institute for Ageing and Health, Newcastle University

Sir Roland Jackson (from March 2013)
Executive Chair of Sciencewise and Chair of the Bioscience for Society Strategy Panel for the Biotechnology and Biological Sciences Research Council (BBSRC)

Professor Bobbie Farsides (from June 2013)
Professor of Clinical and Biomedical Ethics, Brighton and Sussex Medical School. A co-opted member of Council while chairing the Council’s Working Party on children and clinical research.

Adam Wishart (from June 2013)
Writer and documentary maker, focussing on the ethics and policy of science and medicine

Dr Paquita de Zulueta (from June 2013)
General Practitioner, cognitive behavioural therapist, Honorary Senior Clinical Lecturer at Imperial College London

Dr Tom Shakespeare (from October 2013)
Senior Lecturer in Medical Sociology at the Norwich Medical School, University of East Anglia

Members of Council who completed terms
in 2013

Professor Sian Harding (until January 2013)
Professor of Cardiac Pharmacology, National Heart and Lung Institute, Imperial College London

Professor Ray Hill (until January 2013)
Retired 2008. Previously Head of Licensing and External Research for Europe, Merck, Sharp and Dohme

Professor Michael Moran (until January 2013)
Professor Emeritus of Government, University of Manchester. A co-opted member of Council while chairing the Council’s Working Party on emerging biotechnologies

Professor Alison Murdoch (until January 2013)
Professor of Reproductive Medicine, Consultant Gynaecologist and Head of the NHS Newcastle Fertility Centre at Life

Professor Bronwyn Parry (until January 2013)
Professor of Social Science, Health and Medicine at King's College London

Professor Nikolas Rose (until January 2013)
Professor of Sociology and Head of Department of Social Science, Health and Medicine, King’s College London

Professor Thomas Baldwin (until June 2013)
Professor of Philosophy, University of York. A co-opted member of Council while chairing the Council’s Working Party on novel neurotechnologies

Dr Rhona Knight (until June 2013)
General Practitioner and Senior Clinical Educator, University of Leicester. Chair of the Council’s Education Advisory Group and Working Party on donor conception.

Secretariat

Hugh Whittall
Director

Dr Peter Mills
Assistant Director

Katharine Wright
Assistant Director

Catherine Joynson
Programme Manager

Carol Perkins
PA to the Director and Secretariat Administrator

Emily Postan
Project Leader, Novel neurotechnologies

Sarah Walker-Robson
Communications Manager

Rosie Beauchamp
Research Officer (until September 2013)

Tom Finnegan
Research Officer

Kate Harvey
Research Officer

Ranveig Svenning Berg
Communications Officer

Johanna White
Office and Communications Administrator

Haniah Bailey
Intern (August - September 2013)

Alex Oldman
Intern (August - September 2013)

Contact us

Nuffield Council on Bioethics
28 Bedford Square
London
WC1B 3JS
Telephone: +44 (0)20 7681 9619
Email: bioethics@nuffieldbioethics.org