Precision medicine promises to bring massive amounts of data to the clinic, revolutionize healthcare and guide Obama’s moonshot to cure cancer. It also promises to play a central role in a fundamental transformation of societal institutions, one in which digitized data move to the heart of decision-making practices—whether in science, law, policing, or medicine. This workshop proposes to map out the profound questions of science and justice that stand before us as we enter these brave new worlds of biomedical big data. What happens to trust in medicine and patient outcomes when data portals, not doctors, deliver health information, and when health data is used to understand your risk for disease today, but used in lawsuits or a national security investigations tomorrow? What happens to our ability to think about disease, care for patients, and address public health challenges when access to data expands exponentially for some (and not others)? What do we need to understand and what should we do if we want better knowledge, better care and more just, equitable worlds to be the guiding goals of open, big data approaches to health?
The meeting aims to broaden the public discussion about big data and health from ethical and legal questions about privacy and informed consent to these more fundamental questions about the right and just constitution of care, trust, and knowledge in an age of biomedical data. It seeks to do so in a moment when social inequalities are the widest in U.S. history and the premium on trust relationships is at its highest.
To bring these more fundamental concerns to the level of national policy discussion, we will convene an agenda-setting workshop at UC Santa Cruz. The workshop will gather international leaders in genomics, health and informatics, civil rights, bioethics, indigenous rights, science policy and the social study of health and medicine, as well as key representatives from organizations and institutions leading big data approaches to health (e.g, the American Society of Clinical Oncology, the National Institutes of Health). The meeting will be broken into two phases: 1) Discussion of critical challenges, problems and promises; 2) Collaborative work to set the science and justice agenda of big biodata and precision medicine. Outcomes of the meeting include the writing of an agenda-setting document for a national policy discussion, and its circulation to policy institutions, especially the National Academy of Medicine and the Precision Medicine Initiative.