Exploring the UK bioethics landscape – how do we embed bioethics thinking in research culture and policy making?

As organisations with interests in the ethical implications of research and catalysing positive research and innovation culture, the Nuffield Council on Bioethics (NCoB) and UK Research & Innovation (UKRI) set out to better understand how the ethical implications of biological and medical research are considered by people and organisations in the UK.

Initial findings from a survey and roundtable meeting suggest a need for consideration of ethical implications to be better embedded in research culture and health and science policy making, and for greater co-ordination across the UK bioethics landscape.

The UK bioethics ecosystem

The UK has a rich ecosystem of world-leading bioethics expertise. Many organisations and people are involved in thinking about the ethical implications related to the outcomes of biological and medical research. The Nuffield Council on Bioethics (NCoB) plays a central role in this space alongside bodies such as the Human Fertilisation and Embryology Authority, Health Research Authority, General Medical Council, British Medical Association and Academy of Medical Sciences. The work of academic researchers and research funders both generate ethical questions and provide insights on how they should be tackled and reconciled.

Like many other areas of public life, the COVID-19 pandemic has tested this ecosystem to the max. Was the UK in a good position to ensure consideration of the ethical implications was embedded in the response?

UKRI and NCoB set out to explore this question through a survey of people with an interest in bioethics and a roundtable with organisations working in the field.[1]

Embedding ethics in policy

A majority of respondents to our survey thought that there had been recognition in some policy arenas – such as genomics – of the need for consideration of ethics. However, many also thought that the ethical implications of biological and medical research had not been discussed enough with the public or stakeholders during the pandemic.

This was echoed by our roundtable participants who debated whether the Government and society more broadly had been ethically prepared for a major public health emergency. Ethical preparedness can be thought of as the state of being ready to identify, understand and evaluate the ethical issues that arise from any relevant law or policy, being then ready to do what is ethically justified and necessary.[2] Roundtable participants supported the idea of ethical preparedness and highlighted the need for bioethical issues to be considered early on and to be embedded in policy making and research culture.

In considering and investigating bioethics questions, survey respondents cited a number of existing ethics frameworks and guidance that they have used in their work, including those produced by the Nuffield Council on Bioethics, medical bodies, patient charities, US National Academies, UN and WHO. They also drew on UK and international declarations, conventions and legislation, such as the GDPR Principles, the Declaration of Helsinki, and the European Convention on Human Rights.

However, roundtable participants highlighted that the language of ethics can be off-putting to those who are not directly involved. It was felt that having a consistent narrative around bioethics that resonates with policy makers and the public would be helpful.

Under-investigated areas

Approximately three quarters of the survey respondents thought that the ethical implications of some fields of research are under-investigated. For example, there was concern that inequalities highlighted by the pandemic have not been addressed sufficiently by ethics bodies. Some flagged that sometimes the issue is not that the ethical implications have been neglected, but rather they are seen as an add-on.

Only a few individuals surveyed indicated having clear formal processes for selecting topics to investigate. Most respondents who do have formal processes tended to be from Government departments, public bodies and the charity/NGO sector.

Diversity of voices

Participants at the roundtable identified diversity as an issue across the UK bioethics sector. They highlighted that it is often a limited number of people and organisations that have a voice in UK policy arenas. Opportunities for engaging a wider range of stakeholders through engagement platforms and the use of technologies was identified.

Better co-ordination

A key takeaway from the roundtable was that better coordination and communication between people and organisations engaged in bioethics activities in the UK could facilitate the sharing of knowledge and skills. It could lead to collaboration on areas of mutual interest, such as public engagement and horizon scanning.

What next?

These activities have increased our understanding of the bioethics landscape and given us some ideas about how we might enhance and improve it. NCoB is currently undertaking a strategic review. One of the key questions we are considering is: how can we embed ethics in policy making and research? We will be taking on board the lessons and ideas from the roundtable and reaching out to the sector for input and advice.

More broadly, these discussions suggest that there are opportunities to improve research and innovation cultures to better support consideration of the ethical implications of scientific discovery. Ensuring that this is considered business as usual and refining our processes to recognise and value a wider range of voices could help to achieve that. UKRI will be continuing to work with other sector partners to explore this throughout 2022.

[1] Our online survey was open for six weeks in summer 2021 and received 68 responses, mainly from people working in universities and research institutions. A roundtable meeting was held in October 2021 with around 30 organisations represented, including Government departments, regulatory bodies, research funding bodies, professional bodies, research groups, and charities. The meeting was chaired by Bobbie Farsides, Professor of Clinical and Biomedical Ethics, Brighton and Sussex Medical School. We are very grateful for everyone’s contributions.

[2] Ethical preparedness should be central to WHO agreement on pandemic preparedness - The Nuffield Council on Bioethics