James; Further to that, it has been my experience that all of the patients on a study sign the same consent form (with possibly one or two ancillary consents for things like biobanking or pharmacogenetics). Only one copy of the consent, or a pointer to a canonical copy, would need to be on the blockchain. That would make the consent transparent to all. The patient's consent, suitably anonymised, could be recorded on the blockchain with a reference to the canonical consent signed. The final step would be to link the dataset from the research back to the consent under which it operates. That would enable subsequent researchers who seek access to study data to confirm whether the consent allowed what their study required and, if they then obtained access to the data, such that that access was also put on the ledger, this would enable Alice (or her heirs or genome related family) to know how the data was used. Just some initial thoughts. Sincerely, John Wunderlich @PrivacyCDN Call: +1 (647) 669-4749 eMail: john@wunderlich.ca On 23 August 2016 at 12:12, James Hazard <james.g.hazard@gmail.com> wrote:
Very good call today. I was very interested in the discussion of templated consents. This seems very productive. If the consents are authored from templates and have GUIDs, then they can be made machine readable even if all the machine can read is the GUID (for instance in scanned PDFs, which I'm told are common). The GUID also provides a basis for notifications and permissions.
Here is a bit of old work that I did (Primavera did the diagrams) for the Global Alliance for Genomics and Health. http://www.commonaccord.org/index.php?action=list&file=Wx/ org/genomicsandhealth/REWG/Demo/ The complexity of the example reflects (some of) the complexity of the relationships.
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