Getting engaged

Consultations and public opinions

Assessing public opinion can help shape projects, inform public engagement and highlight issues of public concern.

Advances in biomedical science potentially affect the lives of everyone and so rely, ultimately, on public support. "As such, we need to understand how people perceive these developments," says Caroline Hurren, head of the Wellcome Trust’s consultation and education programmes, "and the public needs to feel confident about what is going on behind the laboratory door."

Part of this confidence will come from a perception that there are mechanisms by which public concerns about research and its application can be aired and discussed - real engagement is, of course, a two-way process. Information needs to flow from the public, as well as towards it, and the Trust has been heavily involved in various pieces of social research in recent years.

The aim of these activities has been threefold. First, the Trust has had a genuine desire to gather the views of the public to shape particular projects, most notably the UK Biobank project, which raises issues of considerable public concern.

The second aim has been to develop a better understanding of the attitudinal environment in which science operates. The objective here is to provide a foundation for public engagement activities based on audience needs and perceptions, and the attitudes, concerns and priorities of the scientific community.

The third, wider aim is to attempt to provide a clearer view of public opinion, to support evidence-based decision making and policy setting. The need to capture public views on topical issues has been widely articulated, yet the best way in which this can be done, and the results channelled to the appropriate destinations, is far from clear.

Assessing attitudes

The Wellcome Trust’s first major foray into public attitudes was its investigation of attitudes to cloning. Public Perspectives on Human Cloning used focus groups and in-depth interviews to explore, in a detailed manner, attitudes in a small number of individuals, and to see how these were influenced by the provision of extra information. Concerns about cloning for reproductive purposes focused on the well-being of the resulting children, and people questioned whether cloning for medical purposes would always be put to acceptable use. The study also identified a distrust of scientists’ motives and of regulatory frameworks. This type of approach also revealed that scientifically non-specialist groups can tackle scientifically sophisticated issues, given sufficient time and supporting materials.

The most extensive and ongoing public consultation work has been on the issue of human biological samples. This consultation is part of the UK Biobank project, a major joint initiative between the Wellcome Trust, the Medical Research Council and the Department of Health to establish a biological resource to aid the study of genetic and environmental factors in common conditions such as cancer and heart disease. The project will involve some 500 000 volunteers, who will provide information about their medical history and lifestyle, as well as tissue samples for DNA analysis.

The project obviously raises a number of issues of public interest, not least informed consent and accessibility to data. But which of these are most important and what solutions would be acceptable?

An independent research group was commissioned to consult with a cross-section of the public across the UK, with religious and community leaders, and with special interest organizations such as patient and disability interest groups. The research focused on a number of ethical issues surrounding healthcare, medical research and the principle of collecting human samples, before asking participants’ particular views on the UK Biobank.

After this initial work, further consultations have taken place across the UK with representatives of the age group (45-69 years) that would be participating. Results from these consultations, and those with other key stakeholders such as medical professionals, have been combined with input from ‘professional’ ethicists and fed into deliberations on the running of the UK Biobank project.

Public attitudes

A large public attitudes survey, undertaken in conjunction with the Office for Science and Technology, looked at how people view science. In contrast to what is sometimes assumed, Science and the Public found largely positive attitudes about science: "People aren’t anti-science," says Caroline Hurren. "They are concerned about its regulation, but very aware of the public benefit of scientific research, particularly in biomedicine. This applies even to blue-sky research, which will show no obvious results in their lifetimes."

Science and the Public also attempted to disaggregate the data, to pick apart attitudes in a less global sweep. It identified a number of subcategories of people, who held varying views on science. The ‘Not for me’ group, for example, could not see the relevance of science to their own lives and were not inclined to find out more. By contrast, the ‘Politically Confident’ were enthusiastic about science because of the benefits it brings and felt comfortable with regulatory frameworks. This kind of approach can begin to tease apart attitudes and provide a basis for more informed science communication activities.

To complement this work on public attitudes, the Wellcome Trust also commissioned a survey of scientists’ attitudes to science communication. This provided an interesting counterpoint to the public opinions, and suggests possible actions to encourage greater participation by scientists in public engagement.

The survey revealed that scientists, in general, saw the merits of public communication and were keen to do their bit. However, several major obstacles were thought to exist, including a lack of training, little encouragement from funding agencies, a lack of public interest in science, and the perception that the media distort science.

Interestingly, the survey also identified clear differences in how scientists thought they were perceived by the public and how they actually were perceived.

Novel methods

A variety of methods, including citizens’ juries and consensus conferences, have been used to enable the public to inform scientific decision making. These approaches convene groups of people, usually over a period of time, to get information from experts on a specific topic, consider the information, and make policy recommendations on the basis of that. They have proved particularly popular in environmental issues, and healthcare. "The important thing with these very targeted forms of consultation," says Ms Hurren, "is that they are not done in isolation, as a token gesture, but have a genuine channel to feed into policy making."

Nevertheless none of these techniques is perfect or suitable to every situation, and there is clearly scope for new approaches to capture public thinking. The Wellcome Trust has also supported six research projects exploring novel methods of public consultation.

One example is that being undertaken by Dr Darren Shickle and colleagues at the University of Sheffield, who are using a technique known as conjoint analysis. This combines the depth of qualitative analysis with the breadth of a large quantitative sample, with the aim of identifying the precise point at which people’s preferences change from support to opposition - or vice versa. Other projects are looking at how to involve local media, using short videos of interviews to structure debate, and even how a card game-based approach might be useful to extract deeper opinions in a consultation exercise.

This pluralistic approach reflects that fact that there is no magic formula for perfect consultation that can encompass everyone’s views. There is still much scope for experimentation and innovation - much as there is in scientific research itself.

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