Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance

• Published in: Annual review of genomics and human genetics Vol. 18; no. 1; pp. 389 - 415
• Main Authors: Cook-Deegan, Robert, Ankeny, Rachel A, Maxson Jones, Kathryn
• Format: Journal Article
• Language: English
• Published: United States Annual Reviews 31-08-2017
• Subjects: data sharing; Genomics; Humans; Information Dissemination; knowledge commons; model organisms; Models, Animal; Patents as Topic; science policy; sociology of science; patents; science policy; model organisms; knowledge commons; sociology of science; data sharing
• ISSN: 1527-8204; 1545-293X
• DOI: 10.1146/annurev-genom-083115-022515

The Human Genome Project modeled its open science ethos on nematode biology, most famously through daily release of DNA sequence data based on the 1996 Bermuda Principles. That open science philosophy persists, but daily, unfettered release of data has had to adapt to constraints occasioned by the use of data from individual people, broader use of data not only by scientists but also by clinicians and individuals, the global reach of genomic applications and diverse national privacy and research ethics laws, and the rising prominence of a diverse commercial genomics sector. The Global Alliance for Genomics and Health was established to enable the data sharing that is essential for making meaning of genomic variation. Data-sharing policies and practices will continue to evolve as researchers, health professionals, and individuals strive to construct a global medical and scientific information commons.