Consent to Research

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= Consent to Research makes systems that let people donate their data to research, including informed consent forms and technology to route data to researchers. [1]

URL = http://weconsent.us/

The Consent to Research project seeks to create the world’s largest pool of openly available, user-contributed data about health and disease.

Description

"CtR is a “virtual non profit” - it doesn’t have a legal existence, but is instead held together by open source contracts, social norms, and terms of use.

John Wilbanks runs CtR as a Senior Fellow at the Ewing Marion Kauffman Foundation, a Research Fellow at Lybba, and a member of the Board of Directors at Sage Bionetworks. All of the posts on the site are written by John.

The work is supported by a network of pro bono volunteers, “low bono” vendors, friends, family, and unreasonable patients tired of the system.

Pro bono legal support was provided by Dan Vorhaus and Wilson Sonsini Goodrich & Rosati. Low bono technical services have been provided by Fabricatorz and 5AM Solutions. Inspiration for our work comes from George Church and Jason Bobe and the astronauts who make up the Personal Genome Project, and who first pioneered the “open consent” approach we are turning into a standard system. By listing these folks, we mean to thank them for their help, but do not imply their endorsement.


The Consent to Research project seeks to create the world’s largest pool of openly available, user-contributed data about health and disease.


We’re achieving our goal by helping people become members of a unique group – a “cohort” who not only gather data about themselves and their health, but donate that data to the growing numbers of data-driven research scientists.


How

We create tools to make this pool possible: legal tools (informed consent and related documents), user engagement systems (teaching “wizards” and multimedia), and technology (to properly store and forward user-contributed data to researchers).

The legal system is Portable Legal Consent, so named because it allows our cohort to carry their consent with them, and to attach that consent to the data they donate – it’s portable. The technology is the Consented Genomics Research Environment, or CGRE, a simple system for donating data and then distributing the donated data to researchers.

The first study that uses our toolkit is the Portable Legal Consent for Common Genomics Reearch, or PLC-CGR, which has been positively received by the research and patient advocacy communities. PLC-CGR is a study run by Sage Bionetworks, the first of what we expect to be many such efforts using one of our standardized consent frameworks.

Right now, most people don’t have “computable” data about themselves. So if you don’t already have your genotype sequenced, or an electronic version of your medical records, this project can still accept your data, but it’s not as likely to be used in computational research. You can either commission the creation of this kind of data, or you can join in the growing movement for democratization of data by asking for it from your medical providers.


Why

Because it’s a tragedy that we use so little data in health. Facebook would never change its advertising algorithms with a sample size as small as a phase III clinical trial. If we can build a commons of self-contributed health data, we can bring to bear the kinds of mathematical and statistical models that drive vast portions of our economy, but simply don’t work on small amounts of data like we have in health.

It’s about moving us from health research that is driven from the hypothesis first and alone, to health research that adds a complimentary approach of allowing hypotheses to emerge from vast amounts of data. Building a commons is the fastest, and most democratic, way to achieve that transition.


Legal

All of the tools we are making are free, both in terms of price and in terms of freedom. All our software and copyrightable works are licensed to the public under the Creative Commons Zero waiver or the FreeBSD software license – meaning that anyone in the world can take it, use it, modify it, and redistribute it. We hope that anyone who decides to take it, use it, modify it, or redistribute it will give us credit by linking back to us. Get the source code and start hacking.

In addition, no money is charged to access the data that is uploaded under our system. There may be some access controls put in place downstream where scientists actually get their hands on data, but those can only be controls that help protect the members of the cohort, not controls that place tolls on access to the data.

Our work is supported by Sage Bionetworks, Lybba.org, Inspire2Live, and the Ewing Marion Kauffman Foundation." (http://weconsent.us/about)


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