Open AccessAmerican Association for Cancer Research Project Genomics Evidence Neoplasia Information Exchange: From Inception to First Data Release and Beyond—Lessons Learned and Member Institutions’ Perspectives
Author(s) -
Christine Micheel,
Shawn M. Sweeney,
Michele L. Lenoue-Newton,
Fabrice André,
Philippe L. Bedard,
Justin Guinney,
Gerrit A. Meijer,
Barrett J. Rollins,
Charles L. Sawyers,
Nikolaus Schultz,
Kenna Shaw,
Victor E. Velculescu,
Mia A. Levy
Publication year - 2018
Publication title -
jco clinical cancer informatics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.188
H-Index - 12
ISSN - 2473-4276
DOI - 10.1200/cci.17.00083
Subject(s) - data sharing , informatics , political science , library science , public relations , knowledge management , medicine , computer science , alternative medicine , pathology , law
The American Association for Cancer Research (AACR) Project Genomics Evidence Neoplasia Information Exchange (GENIE) is an international data-sharing consortium focused on enabling advances in precision oncology through the gathering and sharing of tumor genetic sequencing data linked with clinical data. The project's history, operational structure, lessons learned, and institutional perspectives on participation in the data-sharing consortium are reviewed. Individuals involved with the inception and execution of AACR Project GENIE from each member institution described their experiences and lessons learned. The consortium was conceived in January 2014 and publicly released its first data set in January 2017, which consisted of 18,804 samples from 18,324 patients contributed by the eight founding institutions. Commitment and contributions from many individuals at AACR and the member institutions were crucial to the consortium's success. These individuals filled leadership, project management, informatics, data curation, contracts, ethics, and security roles. Many lessons were learned during the first 3 years of the consortium, including on how to gather, harmonize, and share data; how to make decisions and foster collaboration; and how to set the stage for continued participation and expansion of the consortium. We hope that the lessons shared here will assist new GENIE members as well as others who embark on the journey of forming a genomic data-sharing consortium.