Blog8th September 2021
Joining the Nuffield Council on Bioethics in Summer 2021 represents an important step towards a long-standing ambition of mine: to embed ethics in public policy. This ambition sparked a long time ago when I was working as a nursing auxiliary and studying for my philosophy degree. During this time I was fortunate to witness the very best of human compassion, but there were some aspects of treatment that I felt undermined people’s agency, and sometimes, dignity. Over the subsequent twenty years I have worked on policy involving deep ethical questions from pre-birth – leading on the Human Fertilisation and Embryology Authority’s (HFEA) ethical review of mitochondrial donation – to end-of-life choices as the first Director of Compassion in Dying. I am delighted to be taking up this role leading the Executive arm of the UK’s trusted and independent authority on bioethics, at a time when it has never been more important.
Over the last 18 months especially, ethics has become more salient to all of our lives. Governments around the world – as well as individuals – have faced previously unthinkable dilemmas. Most prominently there has been the need throughout the pandemic to balance individual and collective interests whilst taking account of the racial and economic inequalities that COVID has exposed within the UK and worldwide. Many countries have faced the prospect of having to prioritise who lives or dies from COVID because of a scarcity of treatment and resources. More recently we have been forced to question who should get the vaccines first – do we prioritise the most vulnerable to serious disease or death, or those who will keep our essential services going? And, with vaccines being a key part of the route back to ‘normal life’, should we enter into the previously unchartered territory of mandatory vaccination?
The dilemmas faced during the pandemic are only part of the increasing importance of ethical discussion in public life. With the UK leaving the EU, our Government sees science and technology as the jewel in its post-Brexit crown. Whilst positioning the UK as a science and technology superpower might be a laudable ambition, it must go hand in hand with ethical leadership. For example, scientific developments around genome editing in farmed animals raise the possibility of changes such as making animals resistant to disease, more docile and therefore easier to manage, or even emit less greenhouse gases. We need broad societal debate about the ethical relevance of such developments alongside how we should regulate them. The UK is well-placed to do this, we are already world-leaders in regulation of some of the most ethically contentious areas of practical science, such as assisted reproduction and, more widely, are home to considerable bioethics and scientific expertise. Science and ethics go hand in hand – which is part of the reason the Nuffield Council on Bioethics was originally created 30 years ago – but we need to see this relationship more routinely recognised by policy makers. During the pandemic we have pushed for policy that involves the following: transparency, public engagement, trustworthiness, accountability and global collaboration. Whilst there are areas of good practice, much more could be done to embed ethics in policy making.
Whilst ethics has never been more relevant to all our lives, it has struggled to find its way into the political and media narrative during COVID and has been largely absent from the Government’s science and technology agenda. There is an irony in the fact that, whilst I have no doubt everyone has been talking about deep ethical issues over the past 18 months, few of us will have identified as doing so. I think this needs to change – the more the public see ethics as important to daily life, the more there is a political driver for Governments to do so.
Yet whether or not the public demand it, the Government should care about ethics. Arguably it has a moral duty to do so but there are also many practical reasons. We have an opportunity now to shape a better, fairer society, but we cannot do that without talking about the challenges we face from an ethical perspective. One of the most pressing and difficult questions as we move out of the pandemic is how we redress the deep inequalities exposed by COVID. Looking further into the future, we will also be impacted by the increasing application of new science and technologies. For example, genomic technology presents opportunities to make predictions about our health and create more personalised treatments, but there are important ethical questions to work through. For example, when in a person’s life should they receive information about their genetic make-up – at birth? Or should some information be kept back until they are older? – and how will people’s genetic data be used and accessed (within, and beyond, the health system). We need to discuss and tackle these issues, amongst others, at an early stage, to ensure that research and healthcare practises develop in ethical ways.
The Nuffield Council on Bioethics can and should play an important part in embedding ethics in public policy. We have a proud history of independent ethical inquiry and advising on ethical policy making spanning 30 years. From public health to prenatal testing, to global health emergencies and genome editing, the Nuffield Council has been forward-looking and authoritative on the issues that matter and has had a deep impact on societal debate and policy development both in the UK and internationally.
But as the world is changing, we are also thinking hard about how we continue to make our work relevant and accessible; how we increase our audiences and ensure that our work is inclusive; how we meaningfully inform and shape public debate; how we give others a voice and enable public dialogue on the issues of today and tomorrow; and how we work with others to contribute to the development of international bioethics standards. Just as importantly, we need to support the Government to embed ethics in policy making and hold it to account if it does not.