After posting this blog item I emailed Peter Suber to ask what his thoughts were on this issue. For those who don’t know Peter Suber, he describes himself as “an independent policy strategist for open access to scientific and scholarly research literature”. His blog “Open Access News” is well known in the OA world.
I asked him a) what he thought of the news item (particularly as it involved the Wellcome Trust who are strong OA supporters) and b) if he thought the privacy issue might have a knock-on impact to other data collections (that have nothing to do with patient information). He responded as follows:
“I blogged the news on August 30, and just updated my post to include
the Nature News article you pointed out, http://www.earlham.edu/~peters/fos/2008/08/nih-takes-two-oa-dna-databases-offline.html The NIH is as strong a supporter of OA as the Wellcome Trust. But on medical data, both agree that privacy takes priority, or that only anonymized medical data can be made OA. What’s interesting to me is that the method for identifying individuals from these data was discovered after the data were thought sufficiently private and put online. Since scientific ingenuity is always at work that suggests there may be a steadily creeping expansion of privacy exception to OA.
I’m not very alarmed, in part because the same scientific ingenuity can find new ways to anonymize data, and in part because I share the view that patient privacy takes priority.
Because I don’t work in the field, I have no opinion on whether the NIH/Wellcome action was really necessary to protect privacy. But I don’t think the action will have any effect on OA datasets where privacy is not an issue”
I would like to thank Peter for taking the time to respond to my email and for allowing me to blog his responses to share them here.