Bill Paseman of rarekidneycancer.org, recently spoke at the National Cancer Institute (NCI) symposium “Cancer Moonshot Symposium on patient/participant-controlled data sharing”, held on September  26-27,  2019 in Bethesda, MD.   (Videos)

From the NCI "The landscape of genomic medicine is rapidly changing, and patients and care providers now have direct access to expanded genomic information including genomic sequencing, direct-to-consumer genomic testing, and clinical and commercial sequencing. Many patients, especially those with cancer, express a desire to control and share their genomic data results. The goal of this symposium is to better understand the potential impact of patient-controlled genomic data sharing on research, clinical care, and patient well-being and engagement."

Bill's talk was chosen to lead off the discussion on the need of patients to control of their own data.

The current version of his presentation can be found here.