Empowering patients for genomic data sharing
Genomic sequencing has transformed clinical care of cancer patients throughout the world. Exabytes of data are being generated from whole genome sequencing, single cell RNA sequencing, and cell free DNA profiling not to mention imaging and numerous other assays.
These datasets not only inform the clinical care of individual patients, they simultaneously constitute an essential resource for scientific research and development of future therapies.
As researchers, physicians, funding agencies and governmental organizations have important deliberations over balancing patient privacy with scientific data sharing, an important player is often overlooked: the patient.
The role and powers of individual patients, when it is their desire, to not only receive their data but to share it is at the heart of health democracy.
Presentation of a French case study in the US
At a recent conference on personal control of genomic data for research organised by the American National Cancer Institute Joshua Waterfall and Fabrizia Stavru presented their their experience and ongoing efforts to put the patient at the center of the data sharing process.
By bringing together patients, researchers, legal experts, and industry partners, this meeting highlighted the need for collaboration and focused effort on building such resources. The diversity of national regulatory frameworks, institutional resources, and rapidly developing technologies make this problem complex but the simple fact remains: the patient should be central.