The voluntary genetics database proposed by the Medical Research Council in the United Kingdom will initially be used to study cardiovascular disease, leading cancers, and respiratory and metabolic disorders, in addition to the neurological and psychiatric illnesses that chiefly affect people in middle age, it emerged last week.
The database, to be known as the UK Population Biomedical Collection, was discussed at a meeting held at the Royal College of Physicians. More than 150 scientists representing a range of disciplines interested in genetic epidemiology, agreed that it was time to set up a prospective genetic study.
Blood samples and lifestyle information will be taken from a cohort of 500000 volunteers. Strong support for the database was expressed last month by the House of Lords Select Committee on Science and Technology (31 March, p 755).
According to Professor Tom Meade, chairman of the expert working group and the newly created protocol development group, recruitment of individuals will be coordinated by about six regional centres, and data from these “spoke” groups will then be forwarded to a central “hub.” The database will be funded by the Medical Research Council, the Wellcome Trust, and the Department of Health.
The central “hub” location has yet to be decided. “Until we have a firm funding decision, which will be based on a peer reviewed protocol, we have a bit of a chicken and egg situation,” explained Professor Meade. But the intention, he said, is to have a pilot study up and running by the beginning of 2002. He anticipated that it would take up to five years to recruit the full half a million volunteers, aged between 45 and 64. Most of these will hear about it through their GP, and research nurses will be linked to practices to collect the blood samples and lifestyle data. Taken together, the study will use the information to look for interactions between genes and environmental factors.
All data will be treated in the strictest confidence, said Professor Meade, and this database will differ in several ways from the much criticised Icelandic database. Firstly, this will be an opt-in study rather than an opt-out arrangement. Secondly, the data collected will not be exclusively licensed to a single private company (although there will be an interface between the study data, and pharmaceutical and biotechnology companies).
Each volunteer will have to give explicit general consent for the information they provide to be used for a wide range of purposes, although the data will remain anonymous and it will not be possible for identifiable data to be passed to the insurance companies.