Geneticists critical of research ethics committees

BioNews reporting from the BSHG conference, York:
Most genetics professionals think that research ethics committees (RECs) currently hinder, rather than help their research projects, according to the outcome of a debate held at the annual British Society of Human Genetics (BSHG) meeting. Less than ten per cent of around 200 delegates attending the debate agreed with the motion that 'ethics committees facilitate genetic research'. The event coincided with recent calls for changes to the bureaucracy involved in applications for ethical approval of medical research projects, published recently in the British Medical Journal.

Speaking for the motion, REC chairman Professor Andrew George, of Imperial College London, argued that RECs are crucial for preventing public misunderstanding or hostility towards research, and can also help establish a dialogue between study participants and scientists. However, he acknowledged that genetics research projects raised particular issues, and said that although he 'did not want to pretend that RECs are a paragon', they played a 'vital role'.

Opposing the motion, Professor Pat Jacobs of the Wessex Regional Genetics Laboratory in Salisbury described her own unsatisfactory encounters with RECs, and claimed that currently, such committees 'not only do not facilitate genetic research, but they impede it'. She referred to an application for ethical approval of one project, consisting of a 68-page form plus several accompanying letters and appendices, which took the REC eight months to process. She concluded by saying that the current system 'impeded research to such an extent that it is unethical'. In response, REC member Dr John Dean said that all RECs should not be judged on one particular experience, and that they existed to protect adults and children taking part in research projects. He added that research must proceed with the consent of the public, without which, 'lack of funding or activists' might stop research from taking place.

Concluding the debate, Professor Andrew Wilkie, of the University of Oxford, said that current REC bureaucracy meant that patients and researchers both lost out, and 'the result is unethical medicine'. He said that the paperwork involved deterred research scientists from looking for gene mutations in small numbers of patients with very rare conditions. Wilkie finished by calling upon delegates to respond to a letter in last week's BMJ, in which John Pattison, director of research and development at the Department of Health, and Terry Stacey, director of the Central Office of Research Ethics Committees (COREC) asked for researchers to suggest ways in which the process might be better tailored to certain types of applications.

The BSHG conference brought together around 850 clinical geneticists, researchers and genetic counsellors to hear about the latest developments in human genetics. A report of this three-day meeting will appear on the BioNews website shortly.