Public Sharing of Genomic & Health Data

This website cannot display information about genomic profiles or treatments of individuals. However it is recognised that some consumers and patients might be interested in sharing their genomic information. Below are a number of initiatives where individuals can volunteer their health and genomic data.

Note: in providing this information no undertaking is made as to the accuracy of any linked information.

Count Me In partners researchers directly with patients who share their samples and clinical information in order to speed discoveries.

Count Me In partners researchers directly with patients who share their samples and clinical information in order to speed discoveries.

GenomeConnect is a registry used to connect people who are interested in sharing de-identified genetic and health information to improve the understanding of genetics and health.

GenomeConnect is a registry used to connect people who are interested in sharing de-identified genetic and health information to improve the understanding of genetics and health.

MyGene2 is a portal through which families with rare genetic conditions who are interested in sharing their health and genetic information can connect with other families, clinicians, and researchers.

MyGene2 is a portal through which families with rare genetic conditions who are interested in sharing their health and genetic information can connect with other families, clinicians, and researchers.

Nebula Genomics is a storage, sharing, and computing platform for biomedical big data.

Nebula Genomics is a storage, sharing, and computing platform for biomedical big data.

 
A free website where people can share their health data to track their progress, help others, and change medicine for good.

A free website where people can share their health data to track their progress, help others, and change medicine for good.

Working on behalf of patients to generate regulatory-grade clinical and molecular data in a central place.

Working on behalf of patients to generate regulatory-grade clinical and molecular data in a central place.

A worldwide database project which aims to underpin the next generation of cures for rare and intractable cancers.

A worldwide database project which aims to underpin the next generation of cures for rare and intractable cancers.

The goal is to help members interpret their data and enable their contribution to research.

The goal is to help members interpret their data and enable their contribution to research.

Gathers specific genetic, immune, and clinical data across a wide variety of patients to learn more about multiple myeloma, its subtypes, and how to optimize treatment and outcomes.

Gathers specific genetic, immune, and clinical data across a wide variety of patients to learn more about multiple myeloma, its subtypes, and how to optimize treatment and outcomes.

 
A health and DNA discovery platform owned by its community of data contributors.

A health and DNA discovery platform owned by its community of data contributors.

Allows customers of direct-to-customer genetic tests to publish their test results, find others with similar genetic variations, learn more about their results by getting the latest primary literature on their variations and help scientists find new associations.

Allows customers of direct-to-customer genetic tests to publish their test results, find others with similar genetic variations, learn more about their results by getting the latest primary literature on their variations and help scientists find new associations.

RareConnect partners with the world's leading rare disease patient groups to offer global online communities.

RareConnect partners with the world's leading rare disease patient groups to offer global online communities.

Sano Genetics exists to create a global community of people interested and contributing to scientific research.

Sano Genetics exists to create a global community of people interested and contributing to scientific research.

 

Haeusermann T, Greshake B, Blasimme A, Irdam D, Richards M, et al. (2017) Open sharing of genomic data: Who does it and why? PLOS ONE 12(5): e0177158. https://doi.org/10.1371/journal.pone.0177158