Following the general election in May 2015, the Nuffield Council on Bioethics has identified five key ethical challenges in bioscience and health policy for the new UK Parliament, and suggests how these challenges can be addressed.
Over the past 24 years, the Council has achieved an international reputation in advising policy makers and stimulating debate in bioethics. To date, the Council has published 28 influential reports, and has established a network of over 100 experts within academia, the media, policy and clinical practice, many of whom have contributed to this document.
The key ethical challenges, explored in greater detail in the document, include:
1. Build and maintain public trust in science and medicine
Public trust in the people and institutions that drive and govern developments in research and medicine can help the potential benefits of these developments to be realised. For example, inadequacies in the way the care.data initiative took people’s expectations into account led to a damaging loss of public trust.
The promotion across the civil service of ‘open policy making’ is commendable as long as policy makers are genuinely open to what they hear - a positive example is the debate on mitochondrial donation. Scientists also have a vital part to play, and should feel able to be honest when talking about the uncertainties surrounding new developments.
2. Embed public participation in policy and research
Taking account of the values and preferences of a wide range of people will help ensure that research, innovation and healthcare meet the needs of society and retain the confidence of the public. Public involvement is an important way of ensuring that social values help to shape and select emerging biotechnologies, and can help determine what is ethically acceptable.
Open and frank public deliberation can also help determine what is ethically acceptable when it comes to new technologies (such as genome editing), and understanding the language people use to express their views is crucial for constructive debate.
3. Take an international lead in bioethics
Taking the lead in international debates about ethics goes hand in hand with international leadership in science. Many areas of debate, such as new health technologies, standards in animal research and regulations governing organ donation, raise ethical questions that are being asked by policy makers across the globe. The Government should take an approach to research and medicine that is both ethically appropriate for the UK and sets a benchmark for those further afield.
4. Use data responsibly to advance science and wellbeing
Biological and health data is increasingly seen as a valuable national resource. Advances in data science mean it is becoming easier and cheaper to collect, link and use data, but these developments have put pressure on conventional governance approaches. Respect for people’s privacy should be at the centre of any data initiative, and any interference with human rights on the grounds of crime prevention and detection should be proportionate to the need for the intervention, and the evidence of its effectiveness.
5. Be a steward of health
People are increasingly expected to take more responsibility for their own health – to lead a healthy lifestyle and play an active role in managing their healthcare. People are more knowledgeable about their health and are demanding healthcare services that are personalised and user-focused. Nevertheless, the Government has important obligations to generate the conditions that empower people to be healthy and to take measures to reduce health inequalities. Public health interventions should be proportionate, and restrictive measures are likely to be successful only if there is public support and evidence of effectiveness.