The main purpose of keeping detailed medical records will always be to improve patient care, but that is not their only value. Such information has also made critical contributions to medical research. It has enabled scientists to establish that smoking causes lung cancer and that statin drugs protect against cardiovascular disease, and it is poised to become more important still.

Genetic research that seeks to unlock the inherited roots of disease will require vast amounts of data about individuals’ health.

The Wellcome Trust Case Control Consortium, which recently found genes that contribute to diabetes, obesity and heart disease, required information on almost 40,000 people. The UK Biobank project is bigger still, collecting genetic and lifestyle data on 500,000 to investigate how these factors interact to influence health.

As medical records are placed online through the NHS Connecting for Health initiative, scientists should soon be able to study even larger population samples, and to find appropriate patients for their research with ease. Ordinary people are in a position to make a wonderful contribution to medical science, at no cost to themselves and to the ultimate benefit of everyone.

Much of the public, however, is uneasy about this opportunity, as two social science papers published this week made clear. Both an Ipsos MORI poll commissioned by the Medical Research Council, and a qualitative study by the University of Surrey, for the Wellcome Trust, found that while people are positive about medical research, many are reluctant to participate.

While 87 per cent would always trust their GPs with their health data, only 11 per cent say the same of medical researchers. People worry that details of sensitive matters such as sexual or mental health might find their way into the hands of employers, insurers or medical support staff they might encounter in the street. While most are open to persuasion, they are wary that information they give up might be abused.

These results have exasperated scientists, who point out with justification that these fears are misplaced.

The Information Commissioner, for example, is aware of no case in which confidential details of an individual’s health have leaked from a medical research team. Many people said they would be more likely to participate in studies that had been vetted by an ethics committee, but this is already standard practice.

Public awareness of medical research is certainly low. But an interesting theme to emerge from both studies is that as people know so little, they extrapolate from their experience with personal data used in other walks of life. In this information age, such details are bought, sold and stolen daily. The moment we are loose with our e-mail addresses, our inboxes fill with spam. A donation to

charity can mean a deluge of junk mail a week hence. Supermarkets use loyalty cards to build social profiles of their customers. We all worry about credit card fraud and identity theft, and many are concerned about ID cards and DNA databases too. It is not surprising that people assume medical information might be just as vulnerable.

That this is an unfair perception is of course upsetting to scientists, but it is also a cause for hope. Science has an image problem, caused by those with a less scrupulous attitude to confidentiality. Health records are never traded like addresses or shopping habits, but are kept securely for authorised eyes and purposes only.

If this is properly explained to patients, who are told what will not happen to their details as much as what will, there is every chance that their views will change. The public can be taught that research using personal information is an opportunity, not a threat, so long as the medical community accepts the need to educate and engage.

Mark Henderson is Science Editor of The Times

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