Tuesday, December 6, 2011

A nation of willing guinea pigs?

FOR decades, the UK's National Health Service has provided medical care to the country's citizens. The records of that care ? given to some 62 million British citizens, at last count, constitute a cache of medical data of incomparable scale and depth. This week, Prime Minister David Cameron announced plans to open up large parts of that database to anyone who wants it.

Cameron's idea, part of a package designed to stimulate the faltering British pharmaceuticals industry, is that researchers will mine this treasure trove to investigate genetic and lifestyle clues to the causes of diseases, including cancer and dementia, and to identify patients who might benefit from new drugs.

This is not the first time a government has made such a proposal. During the 1990s, Iceland's government wanted to compile a database of medical records, DNA samples and genealogical records for the country's entire population. But the plan foundered in the face of fears that it would compromise patient confidentiality ? and that may yet stymie this latest proposal. While the data will be anonymised and patients will be able to opt out, critics argue that few will exercise that right, and confidentiality can be hard to guarantee when such specific details are at issue.

Are they right to be worried? The reality is that academics, companies and charities have been mining the reams of patient data accumulated by the NHS for decades. The UK Association of Cancer Registries, for example, has been extracting and analysing cancer data for 40 years without a single recorded breach of confidentiality.

Nor is public opposition necessarily entrenched. Many Icelanders subsequently handed over intimate medical information to a company called deCODE Genetics while the UK Biobank has enrolled more than half a million volunteers.

It remains to be seen whether such efforts will offer truly valuable insights, but massive data-gathering initiatives represent one of the best options we have for tackling complex diseases. While Cameron's job is to ensure the UK benefits scientifically and commercially from any such databank, any advances will ultimately be of value right around the world. The idea deserves support.

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