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

 

Organizations:

AliveAndKickn

Androcyte LLC

The Arc of Aurora (CO)

Breast Cancer Genetics Research Program, Ponce Health Sciences University

Captricity

Check Your Boobies

Chicago State University

Chromosome 9 Disorder Advocates

ClinGen

Community Health Charities of America

Detroit Medical Reserve Corps

DNAdigest.org

DNAIQ

Facing Our Risk of Cancer Empowered

Foundation for Sarcoidosis Research

Geisinger

GeneDx

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

Invitae 

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

SparkBeyond

State University of New York Empire State College

Syapse

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 freethedata@geneticalliance.org.

 

 

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