The UK Government is investing more than £2.5 billion in human genomics research, part of which is to establish a UK population database to examine links between genes and health and disease. Dr. Mae-Wan Ho raises concerns over invasion of privacy and genetic discrimination. She points to increasing collusion of government and biotech corporations to divert vast sums of public money into mega-projects that benefit industry rather than society.
The UK Government's Medical Research Council (MRC) is to commit at least £1.9bn to 'health genomics' research over the next five years - in addition to the £675m already earmarked for constructing tech facilities to study genes and proteins [1]. This will coincide with the establishment of a UK Population Biomedical Collection by the Wellcome Trust, a charity, in collaboration with the Departments of Health. The MRC's contribution to that project will be approximately £20m.
Sir George Rada, speaking for the MRC, said: "The recent publication of the first draft of the human genetic code is just the first step in understanding more about the human body. Scientists are now looking for possible links between particular genes and health and diseases. Working out the functions of these genes is key to designing new approaches to detecting illness early and to preventing and treating diseases. The Collection promises to be one of the most exciting scientific initiatives of recent times. It could deliver benefits for the health of many generations to come."
The study will, in the first instance, involve half a million volunteers donating blood samples from which their DNA would be extracted. The same volunteers will provide lifestyle information to the researchers. Over a period of years, this information would be tracked against their medical records. A small number of regional centres across the UK will be set up to recruit volunteers, with the overall study centrally managed and co-ordinated.
Such studies have already raised concerns over the invasion of privacy and the erosion of civil rights. The genetic data will also result in individuals being discriminated against in employment and health insurance [2]. The database can fall into the hands of a private company and further sold to subscribers (see "Human Genome Map Spells Death of Genetic Determinism", this issue). This collusion between governments and the biotech industry is an extremely worrying trend.
The MRC is giving assurance that "The information and samples collected will be held in public ownership for public benefit and there will not be exclusive access to it by any one organisation or commercial company." But there is no guarantee that the policy of successive governments, or of the same government, will remain unchanged.
The health of nations will be infinitely better served by devoting resources to disease prevention, to phasing out the hundreds of known carcinogens among industrial and agricultural chemicals, rather than by identifying the genes that 'predispose' people to ill-health.