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To whom does the data belong?

April 9, 2012

Neuroskeptic pushed me into the twitter-stream yesterday.  Wheeeee! I got followed and contacted by Marilyn Mann, who blogs about medicine, and she specifically pointed me to this post:  Data sharing as a moral imperative.

This is a slightly different slant on data-sharing than the file-drawer problem (though related). What happens to all that data after papers have been written, and, also the data that were not written up, when the questions asked affect the wellbeing of people in general?  This is very pertinent when it comes to testing of drugs or treatments, but I would also say about questions surrounding diet and other questions of general health.

I think the papers and the blog gives a good inroads to this problem – which can be kind of thorny.  It also touches  on who funds data collection, and do they get to withhold results?  Marilyn’s Blog is a neat resource for these questions.

I’m reminded of a fairly recent dispute in Sweden, between Christopher Gillberg that did research into DAMP – an earlier instantiation of ADHD, and Sociologist Eva Kärfve that wanted to examine the data to see if his conclusions were warranted. In the name of protecting the privacy of his patients, the doctor had the data destroyed. I know it has gone to court in EU, but I don’t know the resolution.

In my naive Academic knee-jerk view, I think data should be free and freely shared.  But, then, the biggest threat to my participants is boredom – or occasionally having to watch scary movies.  However, one can see that protecting the privacy of vulnerable informants can be important.  You may have replaced your informants and participants with numbers, but that may in some instances not be considered enough protection, especially when data is sensitive, and perhaps unique enough that the individual still could be identified. But, as was pointed out in our local paper, when medical treatment is based on this research, the data should be available to scrutiny.

Andrew Gelman has also brought up the ethics question when it comes to sharing data.

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