TY - JOUR
T1 - Sharing Data to Build a Medical Information Commons
T2 - From Bermuda to the Global Alliance
AU - Cook-Deegan, Robert
AU - Ankeny, Rachel A.
AU - Maxson Jones, Kathryn
N1 - Funding Information:
Daily data release, however, was for some a bitter pill to swallow. The adoption of this policy in the HGP was driven by Sulston and Waterston, as the C. elegans genome-sequencing leaders, and strongly supported by leaders of the two foremost funders: the NIH and the Wellcome Trust. Debates raged about whether daily data release would hurt HGP data quality (4, 17, 140). Perhaps the most significant hurdle for daily data release, however, was its apparent incompatibility with commercialization. The US Bayh-Dole Act allowed universities and businesses the first right to title on inventions funded by government grants, and a German policy allowed HGP investigators
Funding Information:
The authors’ research was supported in part by an NHGRI grant to Baylor College of Medicine (R01 HG008918); an NHGRI grant to the Center for Public Genomics at Duke University, a former Center of Excellence in ELSI Research (P50HG-003391, principal investigator R.C.-D.); the Ewing Marion Kauffman Foundation (principal investigator R.C.-D.); and the United States Studies Centre at the University of Sydney (principal investigator R.A.A.). R.C.-D. is a senior fellow of FasterCures, a center of the nonprofit Milken Institute. All opinions expressed and errors remaining here are the responsibility of the authors.
Publisher Copyright:
© Copyright 2017 Robert Cook-Deegan et al.
PY - 2017/8/31
Y1 - 2017/8/31
N2 - 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.
AB - 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.
KW - Data sharing
KW - Knowledge commons
KW - Model organisms
KW - Patents
KW - Science policy
KW - Sociology of science
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U2 - 10.1146/annurev-genom-083115-022515
DO - 10.1146/annurev-genom-083115-022515
M3 - Article
C2 - 28415857
AN - SCOPUS:85028741763
VL - 18
SP - 389
EP - 415
JO - Annual Review of Genomics and Human Genetics
JF - Annual Review of Genomics and Human Genetics
SN - 1527-8204
ER -