"The Kavli HUMAN Project, will track every last scrap of data generated by 10,000 New Yorkers. Taken together, that data will weave a detailed narrative of each person’s life – where they go, what they do, how they’re feeling, how they walk the line between sickness and health."
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Previous "studies check up on people once every few months using traditional doctor’s tools like CT scans, HUMAN will be able to track every minute or second, polling data from the genome to the commute. Smartphones – now in almost every pocket in the rich world – are a driving force behind this new way to study human health. They act as both sensors and filing cabinets, allowing physicians to gather real-life health data.
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The HUMAN project is a massive undertaking – and one that may be tricky to get right. As the design of the study is being finalised, a panel is exploring how best to protect everyone’s data. One crucial step, says Koonin, will be to ensure that participants understand what it is that they’re signing up for. Encrypting the data and restricting researchers from accessing the entire set at once could also help maintain privacy. but that may prove very challenging as the New Scientist explains (free membership to read this article):
newscientist.com/article/mg...
Some of the health issues the Kavli HUMAN project plans to study are obesity and cognitive decline. Data captured will be derived from the following sources:
* Home environs
* Smartphone
* Spending
* Exercise
* Medical
* Public records
The article also mentions Apple's recent announced that its ResearchKit software would now be used in studies of autism, epilepsy and melanoma.
The randomly chosen participants in the Kavli HUMAN Project may not be putting their life on the line as do volunteers for clinical trials, but they are certainly putting their privacy on (the) line...
Neil
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