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data, it has been argued that the autonomy of individuals who decide to participate in data sharing efforts has been superseded and the utility of the data as research and educational tools reduced.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

Figure 1. The Texas Cancer Research Biobank (TCRB) Open Access (OA) data sharing workflow.

Participants provided initial consent to participate in OA data sharing. Those who granted consent were educated on risks and benefits then quizzed to test understanding and asked whether they wanted to opt out of OA sharing. Tumor and normal blood specimens from those who showed comprehension and reaffirmed consent were then obtained and subjected to whole exome sequencing.

Figure 2. Allele fraction density plot for all TCRB-OA samples.

Variants were restricted to the coding region so that WEX and WGS samples are comparable. Allele fraction (ratio of variant reads to total reads) density is plotted for each sample.