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

Becnel LB1, Pereira S2, Drummond JA3, Gingras MC3, Covington KR3, Kovar CL3, Doddapaneni HV3, Hu J3, Muzny D3, McGuire AL2, Wheeler DA3, Gibbs RA3.

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data, it has been argued that the autonomy of individuals who decide to participate in data sharing efforts has been superseded and the utility of the data as research and educational tools reduced.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