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Personal privacy and institutional transparency

October 12, 2012

Ever noticed that it’s vulnerable individuals who are transparent about their data (i.e. public and open on Facebook and the like) whereas it’s for-profit institutions like pharmaceutical companies, charged with being stewards of public health, that get to be as down-low as they want?

Do you agree with me that that’s ass-backwards?

Well, there were two potentially good things mentioned in yesterday’s New York Times to ameliorate this mismatch. I say “potentially” because they are both very clearly susceptible to political spin-doctoring.

The first is that Big Pharma company GlaxoSmithKline has claimed they will be more transparent about their internal medical trials, even the ones that fail. This would be a huge step in the right direction if it really happens.

The second is that Senator John D. Rockefeller IV of West Virginia is spearheading an investigation into data brokers and the industry of information warehousing. A good step towards better legislation but this could just be a call for lobbyists money, so I’ll believe it when I see it.

What with the whole-genome DNA sequencing methods getting relatively cheap, modern privacy legislation is desperately needed so people won’t be afraid to use life-saving techniques for fear of losing their health insurance. Obama’s Presidential Commission for the Study of Bioethical Issues agrees with me.

  1. October 12, 2012 at 8:09 am

    Fully agree, there is even a bigger risk for larger public about “open data’. Data once revealed never could be taken back, the entities who are interested in datamining would have ingested it already. Worse off, they have no obligation to make sure that the data set is upto date. They would sell their services to all who are willing to pay for it, the overall impact is that the average joe on the street would end up paying for there incompetence.

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