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Our health data is being ingested into Silicon Valley's gaping, proprietary maw

Accepted submission by Anonymous Coward at 2016-07-25 16:04:41
Digital Liberty

Over the past year, technology titans including Google, Apple, Microsoft and IBM have been hiring leaders in biomedical research to bolster their efforts to change medicine.

In many ways, the migration of clinical scientists into technology corporations that are focused on gathering, analysing and storing information is long overdue. Because of the costs and difficulties of obtaining data about health and disease, scientists conducting clinical or population studies have rarely been able to track sufficient numbers of patients closely enough to make anything other than coarse predictions. Given such limitations, who wouldn't want access to Internet-scale, multidimensional health data; teams of engineers who can build sensors for data collection and algorithms for analysis; and the resources to conduct projects at scales and speeds unthinkable in the public sector?

Yet there is a major downside [nature.com] to monoliths such as Google or smaller companies such as consumer-genetics firm 23andMe owning health data — or indeed, controlling the tools and methods used to match people's digital health profiles to specific services.

If undisclosed algorithmic decision-making starts to incorporate health data, the ability of black-box calculations to accentuate pre-existing biases in society could greatly increase. Crucially, if the citizens being profiled are not given their data and allowed to share the information with others, they will not know about incorrect or discriminatory health actions — much less be able to challenge them. And most researchers won't have access to such health data either, or to the insights gleaned from them.


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