For the past twenty years, Tania Simoncelli has designed advocacy strategies and policy solutions to address complex issues at the intersection of science, technology, law and ethics. In 2017, Simoncelli joined the Chan Zuckerberg Initiative as Director of Science Policy, where her work focused on enhancing public support for science and building an initiative to promote patient-driven disease research at scale. Previous roles include positions at the Broad Institute of MIT and Harvard, the White House Office of Science and Technology Policy, the U.S. Food and Drug Administration, and the American Civil Liberties Union. In 2013, Simoncelli was named by the journal Nature as “one of 10 people who mattered” for her work in spearheading the ACLU’s successful Supreme Court case challenging the patenting of human genes. She holds a B.A. in Biology and Society from Cornell University and an M.S. in Energy and Resources from UC Berkeley.
Patients and their caregivers - particularly in the case of patients who with serious or life-threatening illnesses - are tired of waiting on the sidelines for research to come to them (for example, to find them for clinical trials or to address questions of importance to patients). Increasingly patients are seizing greater opportunities to have access to their health information (including genomic/genetic data and clinical data from electronic medical records, including images) to contribute this data directly to research initiatives that they trust and that are addressing questions of importance to them (either because they could benefit individually or the research is focused on questions the patient believes are important). This panel will showcase existing initiatives that are putting patients (and patient groups) more in the driver’s seat with respect to precision medicine.