title: An open access pilot freely sharing cancer genomic data from participants in 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data, it has been argued that the autonomy of individuals who decide to participate in data sharing efforts has been superseded and the utility of the data as research and educational tools reduced.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).
authors.affiliation: Dan L. Duncan Cancer Center, Baylor College of Medicine, Houston, Texas 77030, USA.
authors.forename: Lauren B
authors.initials: LB
authors.lastname: Becnel
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77030, USA.
authors.forename: Stacey
authors.initials: S
authors.lastname: Pereira
authors.affiliation: Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas 77030, USA.
authors.forename: Jennifer A
authors.initials: JA
authors.lastname: Drummond
authors.affiliation: Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas 77030, USA.
authors.forename: Marie-Claude
authors.initials: MC
authors.lastname: Gingras
authors.affiliation: Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas 77030, USA.
authors.forename: Kyle R
authors.initials: KR
authors.lastname: Covington
authors.affiliation: Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas 77030, USA.
authors.forename: Christie L
authors.initials: CL
authors.lastname: Kovar
authors.affiliation: Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas 77030, USA.
authors.forename: Harsha Vardhan
authors.initials: HV
authors.lastname: Doddapaneni
authors.affiliation: Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas 77030, USA.
authors.forename: Jianhong
authors.initials: J
authors.lastname: Hu
authors.affiliation: Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas 77030, USA.
authors.forename: Donna
authors.initials: D
authors.lastname: Muzny
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77030, USA.
authors.forename: Amy L
authors.initials: AL
authors.lastname: McGuire
authors.affiliation: Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas 77030, USA.
authors.forename: David A
authors.initials: DA
authors.lastname: Wheeler
authors.affiliation: Human Genome Sequencing Center, Baylor College of Medicine, Houston, Texas 77030, USA.
authors.forename: Richard A
authors.initials: RA
authors.lastname: Gibbs
mesh_terms: D022126:Access to Information; D018070:Biological Specimen Banks; D004273:DNA, Neoplasm; D030541:Databases, Genetic; D015894:Genome, Human; D006801:Humans; D033181:Information Dissemination; D010190:Pancreatic Neoplasms / Q000235:genetics*; D013781:Texas
chemical_list: D004273:DNA, Neoplasm