Notice how the for-profit research industry wants access “baked” into all EHRs up front for research uses, to avoid getting individuals’ consents.
They call this a “value case” for the nation’s electronic health system. What great Lakoffian re-framing and propaganda. How do you argue against “value”?
It’s a “value” alright, just not a “value” for patients, because it sets up a system that is both unethical (no consent) and illegal (violates Amercians’ longstanding rights to privacy).
The story says the research industry wants open access to “de-identified” data, but that is NOT what they tell Congress or the regulators. They say they must have access to longitudinal data, which CANNOT be de-identified, because most research cannot be conducted using de-identified data.
The new AHIC 2 will be industry-driven and industry-paid for, with so-called “standards” being devised to meet the needs of corporations, not to adhere to the laws and ethics that governed the healthcare until the ’90’s and the advent of electronic systems for health data.
Today there are ‘smart’ technology solutions to make consent easy, cheap, understandable, and instantaneous (see the consents on HealthVault by application partners for a preview of how simple and clear and specific consents can be). Electronic consents can be interactive and actually explain things, rather than be densely written in legalese so no one understands them.
Why continue to use the kind of privacy-violating blanket coerced consents that were necessary in the paper health system? ‘Smart’ technologies can do a far better job. Using robust consent management tools, we can obtain valid and easy-to-understand specific, time-limited, and cheap consents from millions instantaneously.
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