Pilar OssorioNobel Conference 57

What expectations (if any) do people have when they agree to submit samples of their own data? To what degree should data sets be stripped of individually identifying characteristics? What responsibilities do researchers have to “do good” for individuals as well as “doing good” for society by producing high quality research? How does an algorithm trained on a dataset that under-represented subjects (e.g. based on gender, socio-economic status or race) produce inappropriate diagnostic or treatment guidelines in a healthcare setting?

Pilar Ossorio is a lawyer, scientist and bioethicist who works at the intersection of data/informatics, bioscience, regulation and public policy. Her research considers such questions as: How can big data improve health outcomes, and how can our data management practices either exacerbate or improve existing inequalities? How can we refine genetic testing and analytic procedures to improve clinical care? How can big data be used to reveal and remedy underlying injustices (such as racial disparities in diabetes treatment)? And what sorts of policy frameworks can regulate big data software analytical tools, in the ways the FDA regulates medical devices? 

Ossorio is on the faculty of the law school, and also a member of the department of medical history and bioethics in the medical school at the University of Wisconsin, Madison. She also holds the inaugural Ethics Scholar-in-Residence at the Morgridge Institute for Research, a private, non-profit biomedical research institute using research in fundamental biology to advance human health. Throughout her career Dr. Ossorio has participated in numerous advisory committees and boards that aid governments in setting science policy, including the National Institutes of Health, the FDA, Genome Canada and Health Canada. She has also served on or chaired numerous committees and working groups that advise large-scale genome research initiatives, such as the 1000 Genomes Project and the Human Microbiome project.She is an elected fellow of the American Association for the Advancement of Science (AAAS). A multidisciplinary researcher, she holds both a PhD in molecular biology from Stanford and a JD from the University of California at Berkeley.