Tracking genes and disease

Plans to establish a UK gene bank reopen the debates on data transparency and patient confidentiality.

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LONDON — Trust that between patients and their doctors could be severely undermined by the plans to set up Biobank UK — a national genetic library of DNA from over half-a-million people, GeneWatch UK has warned.

GeneWatch UK, an independent organization that monitors the ethics and risks of genetic engineering, has suggested that public trust in the medical profession could be 'severely damaged' if — as it fears — patients end up being harmed rather than helped by the project. The organization is concerned that proper legal safeguards are not being put in place to prevent commercial interests — such as employers and insurers — exploiting the information contained in the genetic library for their own financial benefit.

At the very least, GeneWatch UK wants stringent measures put in place before Biobank UK even gets off the ground. Better still, it argues that there should be a national debate about ...

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