Patients Have a Duty Too; Medical Research Should Be Seen as an Activity to Which We All Have a Responsibility to Contribute, and from Which We All Benefit

Article excerpt

Byline: Peter Elwood

In the 1970s, he discovered aspirin's potential to reduce heart attacks but today Professor Peter Elwood, of the University of Wales College of Medicine, thinks the future of medical research is under serious threat. He believes rights of patients, ethics committees and an impending EU directive could prevent major medical breakthroughs occurring

I HAVE been involved in medical research for over 40 years and during the past 10 years I have become increasingly concerned to see how difficulties in research have increased - with no apparent benefit to anyone.

The 'rights' of patients and subjects are stressed to the exclusion of 'responsibilities'. Government and charities are, to an increasing extent, directing research and deciding the topics they will fund.

The Data Protection Act and other legislation is making research exceedingly difficult, and a proposed directive by the EU threatens to make clinical trials almost impossible.

The willingness of patients and members of the public to co-operate in research has decreased dramatically. Twenty or thirty years ago, it was usual for around 90% of the subjects asked to help in a study to agree to do so. The proportion is now often less than 60%. Selection bias is thus introduced and may lead to the results becoming misleading.

An increasing distrust of doctors and a suspicion of their motives probably explains the reluctance of many people to become involved, but another major reason is undoubtedly a general lack of understanding of the aims and methods of research by the general public, often amounting to a complete misunderstanding.

If knowledge is to advance, research must be promoted, doctors and other medical workers should be encouraged to conduct research and patients and healthy subjects should be encouraged to co-operate.

Medical research should be seen as an activity to which we all have a responsibility to contribute, and from which we all benefit.

All research proposals involving patients or healthy subjects have to be submitted to an ethics committee for approval. This is right and proper and no responsible research worker would ever object.

At the same time, there is almost no restraint on the power of ethics committees to stop research, or to insist on major changes in a research proposal that is reasonable and clearly in the public interest.

Many research workers see them as an obstruction to be negotiated and one that puts off many younger potential research workers.

Many of the committees appear to focus entirely, and to an extent that is unbalanced, on the rights of patients, making no attempt to discern the extent to which the results of a proposed study would be in the best interests of society and future patients.

They allow no persuasion of patients to co-operate in research.

In the last 10 or so years the legal restraints on medical research have increased greatly, with no apparent benefit to the public.

The Data Protection Act in 1998 severely limits the exchange of data between health authorities and medical research organisations.

There is moreover widespread confusion as to what disclosures are permissible, and many health authorities simply issue a flat refusal to co-operate with research workers. …