On Tuesday, the UK House of Lords will be debating the Science and Technology Committee's recent report on human genetic databases and the Government's response to that report.
The report was intended to assist the Human Genetics Commission (HGC) and the government consider how best to regulate arrangements for the storage, protection and use of personal genetic information. It called for changes in regulation and for an investment in resources in order that the full benefits of human genetic research could be obtained.
Baroness Helena Kennedy, Chair of the HGC, will be speaking in the House of Lords debate. It is expected that she will raise concerns about how DNA data is stored and used and outline the central principles that must govern genetic databases if they are to operate.
Meanwhile, GeneWatch, a campaign group, has warned that volunteers donating blood samples to a 'genetic databank' ought to be protected by legislation well before patients are recruited for the project. Biobank UK, a collaboration between the Wellcome Trust, the Medical Research Council and the Department of Health, intends to use blood samples to investigate the connections between genes and certain diseases.
GeneWatch says that without legal safeguards, genetic information could fall into the hands of private companies, who might misuse it for their own ends. It has also warned that genetic tests that show whether people might be susceptible to certain diseases might be used to discriminate against people.
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