Anticipating and responding to bioethics debates

Last week, we published our first bioethics briefing note on The search for a treatment for ageing, which explores the latest scientific developments in the burgeoning field of ageing research and identifies some of the key ethical issues raised. The briefing note was featured on Radio 4’s Today Programme, and coincided with Pfizer’s decision to cease funding for research on Alzheimer’s disease.

If you are familiar with our work, you may be questioning the change in format. This eight-page document is a sliver of the length of our detailed reports, for which we are well-known. Briefing notes are part of a new thread of ‘active response’ activities that aim to brief policy makers, journalists and others, in a timely manner, on the ethical issues raised by developments in biology and medicine. Alongside this, we will continue to carry out our in-depth inquiries, which usually result in detailed reports and policy recommendations.

As well as publishing briefing notes, the new programme will include activities such as facilitating discussion events, writing opinion articles, giving media statements and interviews, briefing MPs and peers, and responding to policy consultations. Many of these activities have long been part of the Council’s work portfolio, but since summer 2017 the Council has devoted more resources to this type of work.

There are several reasons for this subtle change of strategy. Increasingly we have recognised that there is an important role for an independent voice in the media and policy debates that frequently raise bioethics issues. In the UK, the Nuffield Council is in a good position to be such a voice. Our independence, including from Government, and our cross-disciplinary approach allow us to present, as far as possible, a balanced view of the ethical issues at stake. However, our in-depth work is resource-intensive and takes time, meaning we only publish one or two major reports each year. The new programme will allow the Council to contribute to more bioethics debates and on a wider range of topics, albeit in a different way.

In addition, the Council has a rich and extensive body of work, spanning 25 years and covering topics as diverse as animal research, genetic screening, organ donation, biofuels and health data. The new programme opens up opportunities to draw upon past work, where still relevant, and apply it to today’s discussions. The briefing note on ageing research, for example, draws parallels between anti-ageing stem cell therapies and the cosmetics procedures industry, which was the subject of a major Council report in 2017.

The active response programme is closely aligned to another initiative at the Council – our horizon scanning programme. We have always monitored developments in biological and medical research, and the political and social contexts that affect them, but again we will be allocating more resources to this activity and taking a more systematic approach in future. The cornerstone of these activities will be engaging with a broad range of people and organisations, and we are planning a series of horizon scanning events to do just that in 2018 and 2019.

The urgency and importance of a Council response to developments identified through our horizon scanning activities are weighed according to a number of criteria, such as: would a contribution from the Council anticipate or respond to public concern? Would it be timely and distinctive? This is a call of judgement, and the Executive staff and members of Council work together to develop answers to these questions. We also draw upon the expertise of our Affiliates network – an impressive group of over 100 people who have served on the Council or its working groups in the past.

Many of the active response activities cannot be planned in advance because, by definition, they will be initiated to respond quickly to an external event or development. In the recent past, rapid responses have included the publication of a blog on the High Court case of Great Ormond Street Hospital v Charlie Gard, and media reactions to the Government’s consultation on an opt-out system for organ donation.

We do have some medium-term plans however, and over the next few months we will be publishing further briefing notes on whole genome sequencing of newborn babies, and the use of artificial intelligence in healthcare – two areas where we believe scientific advances and political drivers put them high on the agenda. We are also organising a roundtable meeting in April on the use of novel, unproven medical treatments, which is likely to lead to a briefing note on this topic.

Look out for longer-term activities related to our two current in-depth inquiries as well. Our inquiry on genome editing and human reproduction will wrap up with the publication of a report with policy recommendations in summer 2018, and our new inquiry on research in global health emergencies has recently announced its working group members. We will also shortly be publishing a new Strategic Plan for the Council, which explains in more detail our strategic goals and how we will to deliver them over the next five-year period (2018-2022).We hope you find the new activities and directions helpful. Any feedback would be warmly welcomed – please send your comments to me at cjoynson@nuffieldbioethics.org.