In a post at Nature Biotechnology, John Wilbanks (Chief Commons Officer at Sage Bionetworks) and Stephen H. Friend (CEO at that same outfit) write about a project in which users of a health monitoring app have given informed consent to have their data made available to other researchers. It is not open data, as John points out, but it is open to any researchers who make it through the vetting process.

How to get informed consent via an app? It’s an interesting question to which John and Stephen have given a lot of thought. That’s what the post is about. It seems well-designed to me, but I am not qualified to have an opinion.

Nevertheless, it seems to me that we want something like this, for the data being generated could well be of use to researchers who do not yet know that the data exists, who might be stimulated to think new thoughts on the basis of this data, or who have not been born yet.

Categories: misc dw