2009-01-15

Is Medical Privacy Obsolete?

Joe Nocera appears to castigate Steve Jobs in this article regarding his secrecy about his medical condition. It is often argued that public figures both in government and publicly traded companies have to be transparent in disclosing their medical condition. Others have taken the further step of arguing that our perception of any privacy is sorely askew and therefore we should just accept that in cyberspace everyone knows you are a dog. Although I have argued for information altruism, most of us have some reasonable expectation of privacy. Disclosure as an act of altruism or even exhibitionism is not in the same category as disclosure compulsion. It's not just worrying about employment and insurability, but about stigmatization that may not even be widespread. For example, if a CEO has found his life to be at risk (and which of ours are not?) and does not want to tell his family about it yet, is it really acceptable that he should be compelled to do so on the behalf of some perceived public good?

Are we going to ask all CEO's to get full personalized medical and genomic screening to predict their functional lifespan because of the hoped-for financial risk perspective? Or only when they are going to die within the year? Or if their exercise capacity is down 20% from the year before? And what is the fundamental basis for arguing that such disclosure should be restricted to the CEO? How about other important jobs: CFO, CIO, the head of Human Resources? Corporate Counsel? Granting a "right-to-know" on any other person's health status is likely to be a very slippery slope. Does your information want to be free?

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