NIH’s autism research project: Top data privacy worries

Planned research by the U.S. National Institutes of Health on autism still poses other data privacy concerns even after the federal agency backed away from a planned national registry for diagnosed individuals, said attorneys Ariana Aboulafia and Andrew Crawford of the Center for Democracy and Technology.

NIH last week disclosed that it would collect records from government and commercial databases – including private sector electronic health records, pharmacy data, wearable devices and other sources – to study autism and build a database to identify autism patients.

Days following the announcement, NIH appeared to backpedal on its plans for a registry, amid an outburst of pushback from patient and privacy advocates.

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