John Wilbanks

Chief Commons Officer, Sage Bionetworks
Washington, DC, United States

About John

Bio

I like making it easy to share things, in ways that scale.

I am the Chief Commons Officer at Sage Bionetworks, where I am in charge of figuring out how to design policies and technologies that allow health and biological data to be broadly shared between patients, clinicians, and data analysts.

I have worked at Harvard's Berkman Center for Internet & Society, the World Wide Web Consortium, the US House of Representatives, and most recently Creative Commons. For six years my desk was graciously hosted in MIT's Project on Mathematics and Computation. I also started a bioinformatics company called Incellico, which is now part of Selventa. I spoke at TED Global in 2012.

I studied Philosophy at Tulane University, with a focus on contemporary epistemology and the works of Alvin Plantinga. I also focused on French and spent a year studying Letters at Paris-Sorbonne.

Languages

English, French, Portuguese

TED Conference

TEDGlobal 2012

Areas of Expertise

Sharing , Intellectual Property, Biotechnology, Health, Bioethics, Open Access for Biomedical Literature, Open data

An idea worth spreading

Make it easy for anyone to be digitally naked in the service of science. That means sharing my genotype, my health record, and my lifestyle data with the world's scientists - and making it illegal to be discriminated against as a result.

I'm passionate about

Making it easy to legally share data and creative works. Changing health through participation. Being a dad. Routing around failed infrastructure.

Universities

Tulane University

Talk to me about

Sharing things. Remaking the health and pharmaceutical industry. Starting things. Philosophy. Cocktails. Mexican food. Entrepreneurship.

People don't know I'm good at

Making enchilada sauce from scratch.

My TED story

I grew up science positive - my dad is a climate scientist, and from my earliest memories I was in libraries chasing down citations for him. But I see us heading towards a world in which our digital representations, the data and text that we create almost as by products of our daily lives, is only accessible to corporations who take control of our representations through their terms of use. Scientists - who can help us discover beautiful things, and design working policies - are increasingly locked out, almost by accident. It's a world enabled by analog policies wrenched into a digital age. I work to change those policies, not through lobbying of governments, but through the creation of voluntary, standard, free tools that simply work better than the existing approaches. I'm also the proud father of a little boy and the happy husband of another TEDster, Carolina Rossini.

Comments & conversations

161841
John Wilbanks
Posted over 1 year ago
John Wilbanks: Let's pool our medical data
Hi Gordon - apologies, but I hadn't visited this page in ages (I came today because I got a note from TED about metrics changes and was curious). We had some email server issues, and actually changed the email last summer to go directly to me - but it appears we were too late to meet your issue. I am directly and personally sorry that we failed to respond. Please feel free to contact me directly - john.wilbanks@sagebase.org - and I will follow up on your questions. The study is now closed for enrollment, and we'll be publishing the results and the (publishable) data later this year. I'll make a post here when that's available with links.
161841
John Wilbanks
Posted over 2 years ago
John Wilbanks: Let's pool our medical data
If you want to donate your data, your "informed" consent requires that you undergo at least some informing. The video is part of the ethically approved consent process - it's replacing an hour or longer consultation with a doctor. Good news is you only have to go through the process once, should you complete it...