For immediate release, Monday 14th January 2002
GeneWatch UK this week warned doctors that they should ensure the necessary legal safeguards are in place before asking patients to give blood samples to the proposed new national genetic collection ‘Biobank UK’ (1). A new GeneWatch UK report highlights the lack of legal safeguards (2,3).
Men and women between 45 and 60 are likely to begin to be recruited to the new £60 million genetic project by their doctors later this year. The biobank will link genetic information from the samples to individual medical and lifestyle information.
"Doctors must not be duped into selling a half-baked plan to patients," said Dr Helen Wallace, Deputy Director of GeneWatch UK. "There are clear dangers as well as potential benefits from this type of research. The Government must first ensure that people’s genetic information cannot be abused."
Scientists use biobanks to hunt for genes linked with disease. The hope is that this work will help create new medicines – but this takes many years or decades. In the meantime, genetic tests will be developed to try to predict which people are "genetically susceptible" to common diseases such as heart disease and cancer.
The new GeneWatch UK report reveals that, without proper safeguards, research in Biobank UK could lead to:
- a "genetic underclass" who are excluded from jobs or from insurance for having the ‘wrong genes’;
- companies privatising people’s genes by patenting them - limiting medical research by others and keeping the prices for new treatments unreasonably high;
- people’s genetic information being used for research they disagree with – for example on behaviour, sexuality or intelligence;
- access to genetic test results in the new database by the police or by the Government;
- major scientific errors and mistakes.
"Public trust in doctors could be severely damaged if patients are harmed instead of helped by this research," said Dr Wallace. "Genetic testing means that people with the ‘wrong genes’ could be refused insurance or employment in the future. A legal ban on genetic discrimination must be in place before research begins."
GeneWatch also pointed to its recent revelations that a tobacco company was set to profit from lung cancer genes, following medical research involving lung cancer patients in the US (4).
"Biobank UK could become a gravy train for commercial companies, including those whose products or pollution can cause death and sickness," said Dr Wallace. "Under current patent laws in the UK, you would not even know if a tobacco company was sold the rights to use your genes. Patents on genes block others from developing new treatments for 20 years or more. This kind of profiteering should be banned before doctors ask their patients to give samples."
GeneWatch also called for independent peer review of the biobank proposals following scientific criticism of the plans (5). Spurious links between genes and diseases could be found by research using Biobank UK.
"Poorly designed research means pouring precious public money down the drain," said Dr Wallace. "Doctors’ time and NHS resources should not be wasted – these scientific problems need to be resolved."
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Contact:
Dr Helen Wallace: 01298-871898.
Notes for Editors:
- Biobank UK is being developed jointly by the Medical Research Council (MRC), the Wellcome Trust (http://www.wellcome.ac.uk/en/1/biovenpop.html) and the Department of Health. The plan involves collecting half a million blood samples from volunteers beginning towards the end of 2002. There have been proposals to expand the collection later to include almost the entire UK population ("Fury at plan to sell off DNA secrets", The Observer, 23 September, 2001. Available on http://www.guardian.co.uk/Archive/Article/0,4273,4262710,00.html).
- "Giving your genes to Biobank UK: Questions to ask", written by Kristina Staley for GeneWatch UK, December 2001. Available on the GeneWatch UK website: http://www.genewatch.org/humangen/Publications/reports.htm#BioUK. Printed copies available from GeneWatch UK (£5 for individuals, £20 for businesses and organisations).
- The Government has not yet signed or ratified the European Convention on Human Rights and Biomedicine, which bans genetic discrimination. It has agreed only a voluntary 5-year partial moratorium on the use of genetic tests with the insurance industry, which does not prevent genetic tests taken now from being used to set insurance premiums in the future. There is also no law banning employers from using genetic tests. Current UK law allows people’s genes to be patented by companies, without the individual’s knowledge, and there is no specific law covering the privacy of genetic information.
- "Patent on life warning as links between biotech companies and Japan Tobacco exposed", GeneWatch UK Press Release, 12 November 2001, on www.genewatch.org/Press Releases/pr20.htm
- "A Wild Gene Chase", New Scientist, 9 December 2000