We may be happy to give blood, donate our organs after death, or even take part in clinical trials. But how happy are we to give our personal information to researchers for the public good? This was the topic debated at the Wellcome Trust Spotlight event chaired by Timandra Harkness in July. Here she gives us an overview of the conversations.
The starting points for the debate were the results of some new focus group research commissioned by the Wellcome Trust Policy Department. The focus groups had a generally positive attitude to the potential benefits of sharing data, for patients themselves and for society. And their doubts were more sophisticated than merely worrying about information falling into malicious hands, or supposedly anonymous information being linked back to identifiable individuals.
Trust was a theme that kept emerging, especially in relation to the NHS.
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