[License-review] Request for approval by license steward: Tidepool Open Access to Health Data Software License

[jonathon]

On 10/25/2013 03:15 PM, Lawrence Rosen wrote:
> Laws can be more effective than licenses.

a) Laws are, by their very nature, regional in scope. Licenses are
global in scope;
b) In both Europe and the US, consumers have the right to obtain their
medical records, on request. What is not explicitly stated in the
relevant statutes, is who has to provide data from third party sources,
such as the raw, or interpreted data from lab tests, and the like;

In rereading the license, is struck me that it implicitly requires the
subject of the test, etc. to provide _fully informed consent_ for
whatever is being done to them, to obtain the samples needed to obtain
the data the test, etc utilizes.  I'm wondering whether or not the
license should explicitly require _fully informed consent_. Whilst that
both opens a can of worms, and is usually outside the scope of licenses,
it might be appropriate, if only to inform the patient of their rights,
as defined by the license.

_fully informed consent_ is a term of art, that requires the subject to
understand all alternative options, and the risks, virtues, and vices of
each of those options. It also requires that the subject be fully
informed, and understand all their legal rights, as related to each
alternative option.

jonathon

  * English - detected
  * English

  * English

 <javascript:void(0);>