An open access pilot freely sharing cancer genomic data from participants in Texas.

TitleAn open access pilot freely sharing cancer genomic data from participants in Texas.
Publication TypeJournal Article
Year of Publication2016
AuthorsBecnel, LB, Pereira, S, Drummond, JA, Gingras, M-C, Covington, KR, Kovar, CL, Doddapaneni, HV, Hu, J, Muzny, DM, McGuire, AL, Wheeler, DA, Gibbs, RA
JournalSci Data
Volume3
Pagination160010
Date Published2016 Feb 16
ISSN2052-4463
KeywordsAccess to Information, Biological Specimen Banks, Databases, Genetic, DNA, Neoplasm, Genome, Human, Humans, Information Dissemination, Pancreatic Neoplasms, Texas
Abstract

Genomic data sharing in cancer has been restricted to aggregate or controlled-access initiatives to protect the privacy of research participants. By limiting access to these data, it has been argued that the autonomy of individuals who decide to participate in data sharing efforts has been superseded and the utility of the data as research and educational tools reduced. In a pilot Open Access (OA) project from the CPRIT-funded Texas Cancer Research Biobank, many Texas cancer patients were willing to openly share genomic data from tumor and normal matched pair specimens. For the first time, genetic data from 7 human cancer cases with matched normal are freely available without requirement for data use agreements nor any major restriction except that end users cannot attempt to re-identify the participants (http://txcrb.org/open.html).

DOI10.1038/sdata.2016.10
Alternate JournalSci Data
PubMed ID26882539
PubMed Central IDPMC4755126
Grant ListP30 CA125123 / CA / NCI NIH HHS / United States
U54 HG003273 / HG / NHGRI NIH HHS / United States