A matter of opinion

"The Wellcome Trust funds biomedical research because ultimately it wants to improve health," says Caroline Hurren, Head of the Wellcome Trust's Consultation and Education activities. As such, its work can potentially impact on the lives of people throughout society, who will have their own views on this research and its implications. "We need to know how people perceive biomedical developments; their hopes for benefits, their fears about negative consequences and their views about the ways in which research is being pursued. So we need to listen and learn from a wider range of perspectives in society."

Listening, however, is not simply about conducting surveys of public attitudes which attempt to measure a specific response to an often unfamiliar issue. "A standard survey is in danger of simply reporting ‘non-opinions’ rather than deeper, more considered ones," says Ms Hurren’s colleague, Ian Muchamore. "Genuine consultation is about dialogue and deliberation. People need access to appropriate information, opportunities to absorb this and time to consider their views; these are key processes in formulating opinions."

Several approaches to engage the wider public in medical science debates have already been tried in the UK, including consensus conferences and citizens’ juries. Several bodies have provided opportunities for public responses on particular topics, including the Nuffield Council on Bioethics and the Human Genetics Commission. These methods build upon experiences in other policy areas such as local government, transport and health service delivery.

However, suggests Ms Hurren, public consultation in biomedicine is still in its infancy. "A wider range of specifically tailored research methods need to be developed if we are to find out what people really think." This was the rationale behind the Wellcome Trust’s call in 2000 for proposals in public consultation methods, to try to nurture new thinking, and to create a community of people working in this field. Five projects were funded, offering strikingly different approaches to public dialogue on scientific issues.

Mimicking life

Dr Darren Shickle, a successful applicant from the University of Sheffield, believes that many public consultation efforts have been seriously flawed. "The problem with a lot of consultations is that people do them very badly," he asserts. "Public bodies advertise that there will be a public meeting in a cold church hall in the middle of winter, then call it public indifference when nobody turns up. Or they don’t present the issues in a way that enables respondents to get to grips with them, so they don’t get anything meaningful back. It’s often portrayed as a fault of the public, when really it’s a fault of the people doing the consultation."

Dr Shickle and team are investigating whether a technique known as conjoint analysis could be a useful tool for consulting with the public. It aims to combine the benefits of quantitative approaches which survey large numbers of people with those of qualitative methods in providing a deeper understanding of the thinking and views of individuals. The conjoint analysis methodology will be compared with a quantitative consultation asking people to indicate strength of agreement or disagreement with various statements and a consultation using qualitative interviews.

Quantitative surveys using large samples can provide a representative view of a large portion of the population, but often at the expense of oversimplification. Conjoint analysis, on the other hand, retains the large samples but takes account of the complexity of different factors that influence decision making by asking people to make choices between scenarios with a number of different attributes.

As an example, respondents will be asked to compare a number of pairs of potential scenarios for the proposed Wellcome Trust/Medical Research Council Biobank UK project - a collection of DNA and personal medical and lifestyle information supplied by the public as a resource for researchers. Each scenario comprises a set of four attributes - such as who would be able to use the information collected, and when consent should be given - with each attribute differing slightly between scenarios.

By requiring respondents to make trade-offs between different degrees and combinations of attributes in this way, conjoint analysis identifies the relative importance of different attributes and the strength of people’s preferences. The technique thus mimics more closely the way in which people have to make decisions in real life. Importantly, it can help identify the precise point at which those preferences will change from support to opposition (or vice versa). "We want to know, what is the factor that puts people off. Which factor is the most important determinant of whether people want to participate in the research or not," explains Dr Shickle.

Supporting policy making

If this modified method is shown to work, it is likely to be useful to policy makers who wish to gauge the strength of public opinion or find out what factors will ensure public buy-in or potentially cause problems.

Together, the five proposals funded represent a broad spectrum of different methods for consulting with the public. Some may work better than others, or be particularly applicable in specific contexts.

Although the projects were funded through a targeted call for proposals, the Wellcome Trust is still keen to consider proposals for research into public consultation through its Public Engagement with Science grants programme.

These activities aim to create stronger relations between science, policy makers and other parts of society, based on openness and dialogue - helping to create a climate in which biomedical science can continue to deliver benefits while maintaining the confidence and approval of society at large.

See also

• UK Biobank: A Study of Genes, Environment and Health A sample solution: Article on public attitudes to sample collection
• The people’s science: Article on involving consumers in scientific research
• Time to talk: Article on scientists’ perception of science communication

External links

• Nuffield Council on Bioethics
• Human Genetics Commission
• Dr Darren Shickle at the University of Sheffield: Research interests and contact details
• Deliberative mapping study
• New Economics Foundation