Genetic futures

Advances in genetics could significantly alter the way in which healthcare is delivered, for example with therapies and health assessments based much more on an individual's DNA. On the other hand, it may have very little impact at all. In the absence of any clear precedent, it is difficult to predict how genetics will affect the NHS.

"Most futures techniques rely on extrapolating forwards from the past, but they are of little benefit in trying to predict how individuals and organisations might interact when faced with a particular issue," says Caroline Hurren from the Wellcome Trust’s Consultation and Education department.

One approach tried out by the Wellcome Trust in November 2000 was Genescope, a two-day 'behavioural simulation' designed to explore the relationships between different sectors of society likely to be affected by advances in genetics. "The aim was to develop scenarios and test them in a safe environment with all the stakeholders present, so that we could watch the interactions," explains the Trust's Sarah Bronsdon. "It gave people the chance to find out how they might react in a given situation, and to make mistakes without major consequences."

Scenarios were devised in advance and as participants developed strategies to deal with them, new, unexpected risks or set-backs, such as plummeting share prices or public reaction, were introduced. These created a sense of urgency and dynamism, intensified by the short space of time allocated to each scenario.

The pressure was heightened by the presence of BBC health correspondent, Richard Hannaford, who put delegates on the spot at crucial points. "When things were getting hot, the lights would suddenly go down and delegates would be interviewed with 60 people watching," says Sarah Bronsdon. "People had to think rapidly on their feet and respond on behalf of their organisation, which is what happens in real life."

After each scenario, participants were given time to analyse what had happened and learn from their experiences. "People often took very different courses of action the next time, in the light of this reflection," comments Caroline Hurren. "An important finding was that things tended to fall down when people failed to consult with the public, who then reacted badly when they were presented with fait accompli. By the next scenario they had learnt to engage with the public and those organisations working with the public."

Lack of integration and communication between different sectors was another significant finding of the simulation. "Genescope highlighted the segmentation of the research chain," says Sarah Bronsdon. "Researchers, pharmaceutical companies, doctors and the consumer all tended to focus on their bit of the chain without looking at the whole process of which they were a part. Things would have been much smoother if their interests had been more aligned."

Participants also felt that important issues had been highlighted. "We saw that some of the major funders needed to be better prepared for possible responses to scientific discovery by the public," says Professor David Porteous, a researcher at the MRC's Human Genetics Unit in Edinburgh. "There was no counter-balance to the pressure groups, who were recognised as exerting influence far out-weighing their genuine representation of the public. It was clear that something had to be done pre-emptively there."

In practical terms, some participants felt that time pressures curtailed important debate. "I would have found it more productive to have had just one or two exercises and focused more in depth on the issues that were raised," explains Eileen Martin, Chair of Council of Deans and Heads of UK University Faculties for Nursing, Midwifery and Health Visiting and Dean of Health at the University of Central Lancashire.

Genescope provided food for thought for delegates, and perhaps a greater sense of how their particular sphere of interest fitted into a much broader picture. Events such as Genescope may not be able to make it any clearer how genetics will impact on health services, but they may help prepare participants for change when it does arrive.

See also

• Further public consultation programmes at the Trust