Genetic Alliance

Genetic Alliance is a nonprofit organization, founded in 1986 by Joan O. Weiss, working with Victor A. McKusick, to advocate for health benefits in the accelerating field of genomic research.

They create programs using a collaborative approach, and aim to increase efficiency and reduce obstacles in genetic research, while ensuring that voices from the involved disease communities are heard.

[citation needed] Participating organizations store their data and samples in GARB for on-going use in research, with the goal of developing new diagnostic tools and treatments for diseases.

[3] Genetic Alliance provides the facility, collection, processing and archiving of samples stored in the biobank, as well as training and tools for organizations to effectively participate in this resource.

[2] GARB has an institutional review board (IRB), which approves data collection protocols, material transfer agreements, and documents used in informed consent and minor assents.

President and CEO Sharon F. Terry in 2017