UK Government to Establish Population DNA Database* - For Whose Benefit?

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. Vast sums of public money are going into megaprojects that benefit industry rather than the public. The focus on genes is a major distraction from the overwhelming causes of ill health, which are environmental and social. It will also marginalize and victimise those who need healthcare most of all.

The UK Medical Research Council (MRC) is to commit at least £1.9bn to 'health genomics' research over the next five years - in addition to the UK Government's £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 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. The Icelandic population database was indeed sold by the Government to Decode Genetics, a California-based company. The Swedish Government, similarly, is in negotiation with another company over that country's population DNA database. 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. We were told that public finance of the human genome project would keep the human genome in the public domain. That has not been the case. Patenting of human genes and cell lines continues, and private companies have benefited enormously by 'mining' the public database [3].

Governments are increasingly diverting public finance into mega-projects that benefit biotech companies rather than the public. The undue focus on human genomics has narrowed the options for healthcare and foreclosed other promising approaches. It is also a major distraction from the real causes of ill-health, which are overwhelmingly environmental and social, and will end up marginalizing and victimising those most in need of care and treatment.

• Most diseases are complex, and correlation between genes and disease is weak.
• Genetic differences are, much more often than not, swamped by environmental influences.
• So-called 'single gene diseases' such as cystic fibrosis and sickle-cell anaemia make up less than 2% of all diseases. And even those are subject to influence by many other genes and by the environment, so that prognosis based on single genes are notoriously unreliable.
• Practically all populations are genetically diverse, with hundreds of variants in every gene. Thus each individual is genetically unique in their 'predisposition' to different diseases.
• Recent research with gene-chip technology confirms that gene regulation is global: the expression of many, many genes is changed in response to a single chemical signal [4]. There is simply no reductionist, magic bullet approach to health [3].

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.

Article first published 22/01/01

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References

1. 'Mrc Science Budget Allocation Enables Further Development Of Health Genomics Research' MRC Press Release MRC/69/000, 22 November www.mrc.ac.uk
2. See 'Genetic civil rights alert' I-SIS News#6, September 2000
3. See 'Human Genome - The biggest sellout in human history' by Mae-Wan Ho, I-SIS Report, September 2000
4. Magasnik, B. (2000). Global regulation of gene expression. PNAS 97, 14044-5