Genetic data hits consent setback

February 18, 2000

The near-complete genetic database of the population of Iceland being built by the US firm deCode Genetics may be shunned by major pharmaceutical companies because it does not involve the active consent of the people being studied.

A meeting of the British Association for the Advancement of Science in London this week heard that Glaxo Wellcome, one of the world's biggest drugs companies, would not regard the deCode data as acceptable.

Lefkos Middleton, clinical genetics adviser to the company, said Glaxo Wellcome would not use genetic data from populations that had not actively given informed consent for it to be used.

The small-scale experiments done by deCode in Iceland to date follow this rule, but the national database does not. Dr Middleton said Glaxo Wellcome had rejected a number of population groups, including one in Norway, because of its insistence on informed consent. The firm is now looking at other groups where positive consent can be obtained from all participants.

Tom Meade, director of the Medical Research Council Epidemiology and Medical Care Unit, told the BAAS meeting that informed consent would also underlie the sample of 500,000 middle-aged British patients whom the MRC plans to introduce to the Wellcome Trust, the world's biggest medical charity.

The plan is to use GPs to explain the scheme, which will cover work on unanticipated conditions, and to obtain consent.

Professor Meade said the group would be used to obtain information on diseases including cancer, cardiovascular disease and physiological diseases. A full report on the proposal is due in March.

Ragnheidur Haraldsdottir, deputy permanent secretary of the Icelandic ministry of health and social affairs, said more discussion was needed of the types of consent patients can give for the use of genetic data.

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