Tuesday, September 28, 2010

to share or not to share

Researchers in medical genetics share a fundamental dilemma with the people running facebook. Their whole enterprise would benefit from the uninhibited sharing of information, but individual participants might suffer from it.

In biomedicine, there are two major developments that have made a rethink of the privacy settings necessary, namely the arrival of personal genome sequencing, and the genome wide association studies of tropical diseases, which depend on participants who don't always qualify for "informed consent" in the established sense.

Oxford bioethics experts (in and around the Wellcome Trust Centre for Human Genetics, pictured below) have played a leading role in setting up new procedures to handle these privacy problems, and have hosted an international conference on data sharing here earlier this month. Reason enough to explore the issues in a news feature, which is out in Current Biology today:

New data issues
Current Biology
Volume 20, Issue 18
(28 September 2010)
Pages R790-R791

access via sciencedirect

PS my previous publication on this issue is here.

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