June 2012
1 post
Change The Game.
Just a quick note about the 23andme announcement that it has been granted its first gene patent. Read Dan Vorhaus, who provided us with pro bono advice, with the definitive piece on the topic so far.
23andme is a business. Their business is selling the anonymized data to those who wish to use it for research purposes and in doing their own research on the data. They tell you this up front, as...
May 2012
1 post
Translators Needed!
We are rapidly moving to explore making Portable Legal Consent international. We’re starting by translating the core documents into Dutch, French, and German - and we’re happy to pay for the translations. Please pass the word.
April 2012
1 post
PLC Approved - Sign Up To Be Notified
We received formal notification today that the PLC clinical study protocol and consent were approved on 4/23, and we look forward to advertising for participant enrollment in May once we have completed a few requested modifications to study documents and partner websites.
If you want to be notified when PLC launches and begins enrolling patients, make sure to sign up for our mailing...
March 2012
2 posts
Your data are not a product
Another Nature editorial talking about our work here, this time in Nature Genetics. Another strong endorsement of the idea that patients are entitled to copies of data about their own health, and of building infrastructure that can route that data to researchers.
The title of this post was the title of the editorial. Couldn’t have put it better myself.
Our data are far too often products....
Nature News Editorial Profiles CtR
Nature News ran an editorial called “Incidental Benefits” this week.
There’s a lot of good stuff in there but the conclusion is the kicker.
In this free market, how sure can researchers be that they are truly doing no harm to their study participants when they take a cheek swab? People thinking of entering a study will assess the risks of how their volunteered genetic...
February 2012
1 post
Alpha Testing Closed
Thanks to everyone who signed up. We’ve completed our alpha testing project and didn’t even need to burden all of the volunteers.
Consent to Research is submitting its work to an Institutional Review Board for approval in the coming weeks. We look forward to enrolling our first cohort members thereafter. Keep your eye on this space for news as it comes.
And there’ll be lots of...
November 2011
5 posts
Alpha Testing Launched
We’re opening up for alpha testing today. But first, a bit on why we’re here at all.
Systematic clinical studies are the way we make progress in medicine. Despite all the new technologies which allow us to learn about biology and diseases through animals, cell lines, or molecular experiments, at some point a new treatment has to be tested in humans for the first time. This is...
WatchA 12-minute slidecast explaining the benefits and risks of Portable Legal Consent. Embedded into the alpha Consent process.
October 2011
2 posts
“The time has come for patients to take control of their own data, and...”
– Stephen Friend.
background reading
Wireframe public oct 2011 View more presentations from john wilbanks