Biosecurity and social responsibility in an era of citizen science

Abstract: Technological and social forces are allowing the growth of science outside a professionalized context.  The Internet, mobile devices, and public availability of big data are technological facilitators of “citizen science”, in part through enabling data sharing, analysis, and communication.  These technological changes now allow the entire scientific process, from funding and development of a research agenda, to conduct, analysis and dissemination and application of findings, to take place without the involvement of any science professionals or research-related institutions.  However, most ethical and regulatory frameworks for biomedical science arose from concepts of obligations of professionals and (largely not-for-profit) institutions.  We will discuss current examples of “citizen science” in biology and clinical research, and the ethical and policy implications.

About the Speaker: Mildred Cho is a Professor in the Division of Medical Genetics of the Department of Pediatrics at Stanford University, Associate Director of the Stanford Center for Biomedical Ethics, and Director of the Center for Integration of Research on Genetics and Ethics. She received her B.S. in Biology in 1984 from the Massachusetts Institute of Technology and her Ph.D. in 1992 from the Stanford University Department of Pharmacology.  Her post-doctoral training was in Health Policy as a Pew Fellow at the Institute for Health Policy Studies at the University of California, San Francisco and at the Palo Alto VA Center for Health Care Evaluation.  She is a member of international and national advisory boards, including for Genome Canada, the March of Dimes, and the Board of Reviewing Editors of Science magazine.  Her current research projects examine ethical and social issues in research on the human genome and microbiome, synthetic biology and genome editing, and the ethics at the intersection of clinical practice and research.