For immediate release – Wednesday 24th September, 2003
GeneWatch UK today responded to the "Setting Standards" document published by the controversial genetics research project, UK Biobank(1).
"This report puts the cart before the horse. It sidesteps the big issue - whether trying to identify individuals who are supposedly ‘genetically susceptible’ to smoking related diseases, pollution, adverse drug reactions or unhealthy diets is scientifically credible or of benefit to health. The proposed Biobank will not have data of sufficient quality to do this and faulty genes are not the main cause of most diseases," said Dr Helen Wallace, GeneWatch UK’s Deputy Director.
GeneWatch also described the report as a missed opportunity to clarify the relationship between the Biobank and commercial interests and to involve the public in decisions about who should be given access to the data.
"Biobank plans to remove people’s right to know about commercial conflicts of interest – volunteers will not know which companies want to use their data or why they want to use it. Many doctors would not take part in tobacco industry research, but Biobank has failed to rule it out. Will the insurance industry or employers use the Biobank to develop genetic tests that they then use to exclude people from insurance or a job? The so-called ‘ethics and governance framework’ may simply give industry carte blanche to do what it wants," said Dr Wallace.
GeneWatch also remains concerned that companies could use the Biobank to patent gene sequences linked to diseases and claim excessive monopolies over any future treatments. The Biobank’s policy on patenting has still not been finalised, but gene patenting is legal and could happen without participants being told.
"Many people believe gene patenting is immoral and it can stifle research and innovation," said Dr Wallace.
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For further information, contact:
Dr Helen Wallace on 01298 871898 (office) or 07903 311584 (mobile).
Notes to editors:
- The report is available on the UK Biobank website at www.ukbiobank.ac.uk