A message from George Church, President of Open Humans Foundation Board of Directors, and Misha Angrist, John Cammack, Esther Dyson, Juan Enriquez, Steven Keating, and Michelle Meyer.
On behalf of the Open Humans Foundation Board of Directors we are thrilled to announce a new Executive Director for the Open Humans Foundation: Madeleine Ball.
Madeleine Ball is co-founder of Open Humans, and our previous Director of Research. In recognition of her vision for opening human health data – and her talents in pursuing this vision – Madeleine was recently awarded a Shuttleworth Foundation Fellowship. We are thrilled with her recognition with this award, as it publicly confirmed what we privately knew: Madeleine is an enormously talented individual that balances thoughtful strategy with bold vision. We are confident that she will lead OHF to new innovations and achievements.
Our organization has undergone exciting changes in recent years, and we have had a rich history since our start. Founded by Jason Bobe and George Church in 2008, our organization was originally called “PersonalGenomes.org” to reflect its focus on George Church’s Personal Genome Project.
Jason, our organization’s co-founder and outgoing Executive Director, was pivotal in reifying George’s pioneering vision for open science, genomes, and health data. After helping to establish the Harvard Personal Genome Project (PGP), Jason set-up a global network including sites at Sick Kids Hospital in Toronto, Canada; University College London in the United Kingdom; and Center for Molecular Medicine in Vienna, Austria. Simultaneously, Jason’s support for the pilot PGP site – at George’s lab in Harvard Medical School – helped it achieve many noteworthy successes.
Jason organized the Harvard PGP’s study protocols, consents and operations, including an innovative quiz format for testing and improving understanding in the informed consent process. He also led the effort to integrate the Harvard PGP platform with Google Health (sadly discontinued), and, with Jason’s guidance, Harvard PGP was the first participatory study to adopt “Creative Commons Zero” for public domain human health data, releasing an unprecedented set of public genome and health data, cell lines, and official “genome reference material“, as well as sparking numerous ground-breaking papers.
In 2010, Jason’s work extended to the Genomes Environment and Traits conference (GET), an annual conference exploring the frontiers of understanding about human biology that uniquely brought together research participants and scientists to debate the technical, commercial, and societal impacts of advances in our ability to measure and understand people and their traits. (At the first conference, a dozen pioneers of personal genomes – like James Watson, Esther Dyson and Skip Gates – were interviewed by Robert Krulwich and Carl Zimmer, while a desktop DNA sequencer hummed away in the back, analyzing the microbial DNA extracted from a dollar bill donated by a conference participant.) In recent years, the conference itself became a laboratory: GET Labs invited attendees to participate directly with studies. This led to some interesting shared experiences – like armpit swabs, sampling face mites, and the sounds of sterile kit packaging being unwrapped in the restrooms stalls.
Most recently, in March 2015 Jason and Madeleine launched a new program, Open Humans, with support from the Robert Wood Johnson Foundation and the John S. and James L. Knight Foundation. Its transformative, participant-centered approach unlocks new opportunities for research – including longitudinal data aggregation and a cohort shared between studies. The success of this program led us to change the organization’s name to “Open Humans Foundation” in 2016. While we continue to support PGP and GET programs, we believed this new name would better reflect the organization’s overarching vision, as well as expressing our confidence in the Open Humans program itself.
Madeleine is expected to begin as Executive Director on June 1. We are sorry to see Jason leave the Executive Director position, as he shifts to focus more on his work with the Icahn Institute at Mount Sinai where he leads the Resilience Project and other cutting edge clinical research endeavors at the newly formed Institute for Next Generation Healthcare. Jason will continue his leadership of the organization by joining the Board of Directors later this year.