Free The Data is the work of a consortium of organizations, managed by Genetic Alliance and supported by Invitae, Private Access, the University of California, San Francisco (UCSF), the International Collaboration for Clinical Genomics (ICCG), Syapse and Captricity. We welcome any organization and or individual to the effort. Click here to join, and read on to see who is already a part of the movement!

The Free the Data Steering Committee

Lisa Alderson, Invitae

Sherri Bale, GeneDx

Bob Cook-Deegan, Duke University

Andrea Downing, Advocate and Writer

Jessica Everett, NSGC

Andy Faucett, Geisinger

Jonathan Hirsch, Syapse

Laura Koontz, OCNA

Bob Nussbaum, UCSF

Heidi Rehm, Partners Healthcare and ICCG

Joanna Rudnick, Advocate and Filmmaker

Robert Shelton, Private Access

Sharon Terry, Genetic Alliance

John Wilbanks, Sage Bionetworks


Jack Andraka, Inventor and Liberator


Jennifer Cobb, Captricity


Heather Joseph, SPARC


Lisa Schlager, FORCE



The Free the Data Coalition


The Free the Data coalition shares a central belief in the importance of open access to genetic data and collaboration through information sharing. Join today to help us spread the word about open access! We welcome any individual or organization to the movement.


Who We Are


Congresswoman Debbie Wasserman Schultz: Honoary Chair

Rep. Debbie Wasserman Schultz
Honorary Chair of the Free the Data Coalition




Androcyte LLC

The Arc of Aurora (CO)

Breast Cancer Genetics Research Program, Ponce Health Sciences University


Check Your Boobies

Chicago State University

Chromosome 9 Disorder Advocates


Community Health Charities of America

Detroit Medical Reserve Corps


Facing Our Risk of Cancer Empowered

Foundation for Sarcoidosis Research



Genetic Alliance 

Hereditary Disease Circle

Insight Medical Genetics, LLC

Institute of Genomic Medicine

International Collaboration for Clinical Genomics

International Essential Tremor Foundation

International WAGR Syndrome Association


Metaplastic Breast Cancer Foundation

MGZ - Medical Genetics Center

National Fabry Disease Foundation

National Society of Genetic Counselors

Outpatient Medical Care International PC

Ovarian Cancer National Alliance

Partners Healthcare

Pathway Genomics

Private Access

Sage Bionetworks

Scholarly Publishing and Academic Resources Coalition


State University of New York Empire State College


Tute Genomics

The Ultra Rare Disease, Disorders & Disabilities Foundation

University of California, San Francisco Helen Diller Family Comprehensive Cancer Center

University of Michigan - MMGL Molecular Genetics Laboratory

Yale Cancer Genetic Counseling

Young Previvors


Free the Data uses a participant-centric platform that allows you to decide how much you share, and with whom. Using privacy and security technology similar to banking, you have control over your health information and can set your own sharing, privacy and data access preferences. For more information please see our "Learn More" page, or contact us at



Genetic Alliance is nonprofit health advocacy organization, dedicated to transforming health by engaging individuals, families and communities.