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

Sci Data. 2016 Feb 16;3:160010. doi: 10.1038/sdata.2016.10.

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data, it has been argued that the autonomy of individuals who decide to participate in data sharing efforts has been superseded and the utility of the data as research and educational tools reduced.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).

Publication types

  • Dataset
  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Access to Information
  • Biological Specimen Banks
  • DNA, Neoplasm*
  • Databases, Genetic*
  • Genome, Human*
  • Humans
  • Information Dissemination
  • Pancreatic Neoplasms / genetics*
  • Texas

Substances

  • DNA, Neoplasm