Raising awareness of bioethics: what is the role of a national ethics committee?

This is an edited transcript of a talk given by our Director, Hugh Whittall, at the 2016 Global Summit of National Ethics Committees.

Bioethics has to and does engage important public interests and is in itself a public enterprise. Of course, national ethics committees (NECs) advise policy, but if we see bioethics as a public enterprise that engages public interests then this obviously requires public involvement in a pluralistic fashion, engaging a national and international discourse. That much we all will agree. And we know that this will contribute to what is only ever a provisional resolution of issues which means that we also have to engage in continual reflection that involves people much more widely.

The question then is: What is the role of NECs in this context? I will break this down into some different elements, asking: What is it that we are trying to do; and what are the ways in which we can try to do those things?

So, the first aspect of “What do we want to do?” through engaging people more widely is to get their input into our work, into our deliberative activities. I think that we should not try to claim that we are the experts who make decisions on behalf of everybody, but rather we should engage people to contribute to our own projects, to our own work.

The second is that we try to stimulate a public contribution to a policy process so that the information that goes into policy processes is not simply channelled through NECs themselves but that we stimulate a public discourse in which those contributions can be made in other ways.

The third aspect of what we might be trying to do is to inform people of our own work. So, in the dissemination of our published opinions, reports and recommendations, we will of course target policy makers and decision makers, but we also want to promote an understanding of what we have done within a wider public context.

The fourth aspect of what we are trying to do is to promote a general understanding, not necessarily specific to a particular problem or a particular issue but generally, as others here have said, to cultivate critical thinking. Another phrase that is often used is “promoting bioethics literacy” - this is the capability of people to recognise, to contemplate, to think and to engage in these types of discussions.

So these are four different aspects of what it is that we might be trying to do through engaging a public. When it comes to the ways in which we might try to do that, I have identified three different approaches based on our own experience at the Nuffield Council on Bioethics. The first is to try to engage with people directly. In the UK, we have about 65 million citizens and it is quite difficult to sit and have a cup of tea and a conversation with every one of them, as nice as it would be. The second might be via the media, as an intermediary. And the third might be through partnerships. I would just like to speak a little bit about each of these approaches.

The first, directly speaking to an entire population, of course, becomes very difficult. In our work we carry out public consultations where we seek as many views as we can, we put information out widely, or we might target particular interest groups who we know have a particular stake in an issue, or we might use focus groups where we speak to groups representative of wider publics. All of these approaches clearly have some benefits and some value, but they also have limitations. We have, as others have, prepared educational materials that are intended to be used in schools, and made them freely available online, but teachers have access to thousands of online resources and what they look for are often the ones that respond directly to the questions that will be in exams at the end of the year. So, while I am not saying this could or should not be done, it has been difficult for us to ensure they are widely used.

The second approach is through the media. We run press briefings, send out press releases, etc., and this meets with variable success. We know that the media tend to write stories largely when there is an argument of a certain nature. And the media also want to present the extremes. So, when we say, “Well, we have got quite a balanced argument here”, this is not always well-reported. I think that we must work closely with the media so that when they do see an issue relevant to our field of work, then this is the place that they can come to discuss, to understand and to work through it. Social media is increasingly important and we are using Facebook, Twitter, and blogs to reach wider audiences. I think that we have to keep working with this, but we need to be careful that we are not just talking to our ‘friends’. We can have, say, 5000 followers on Twitter, but we do not know who is really listening.

The third, which is one that we certainly have found important to develop in recent years, is about identifying partners. If we have limited capacity and limited ability to reach people more widely, despite our ambitions and our best intentions, it is interesting to look for partners who can work with us. At the Nuffield Council, we have done this in a number of ways. We worked with Fun Kids, an online radio station that produced a number of two-minute radio clips directed at children aged six to twelve. These were broadcast on digital radio in London and South East England and online and had about 370 000 listeners. We have worked with science museums; we have partnered with theatre groups, such as Theatre of Debate in the UK who construct plays to tour in schools; and we have worked with people who use our material to develop activities or stalls at different kinds of festivals. We have also worked with spoken word groups - last year we partnered with a group called Apples and Snakes which specialises in poetry, and through them we had poets working with us on a project around naturalness. These are examples of ways we can work with others who are well placed to take our work out to audiences that we might not otherwise reach.

The point is, all of these things are opportunities, but they all have certain limitations. The conclusion that I come to here is that we all agree that we would like to do all of these things and engage as many people as possible, but we have limited time and limited resources. The key is to mix up these ideas to understand what it is that we are trying to do, what is the right way to get to that, and to understand the effect of it. The question about impact and how we can measure the effect of what we do is really difficult but really important. Because if we have limited resources, then we have to be really smart about how we select what we do, why we do it, who we work with – these must be trusted independent partners – and how we understand the effect that it has had.

You can watch a video of Hugh and other speakers in the session on raising awareness of bioethics via the Global Summit website (Video 8): https://www.globalsummit-berlin2016.de/documents-and-links