WORKSHOP: Open Data/Private Persons: Forging a New Social Contract for Biomedicine in an Age of Genomics and Big Data

University Of California-Santa Cruz, Santa Cruz CA

Investigators

Abstract

Genomics and 'big data' approaches to health today promise a better understanding of the pathology and treatment of a wide range of diseases, from cancer to Alzheimer's. However, mining genomic and other digital health data require practices for collecting and processing large amounts of biomedical data that challenge longstanding commitments to privacy and ownership and control of one's own body. This clash of ethos of sharing with those of privacy and autonomy has sparked a public debate about who owns bodily tissues and how health-related data should be collected and shared for the public good. To bring these growing concerns to the level of national policy, we will convene a two-day long agenda-setting workshop at UC Santa Cruz. The workshop will bring together international leaders in genomics research, women?s health, informatics, healthcare, civil rights, indigenous rights, science policy and the sociology of medicine. The goal will be to innovate novel approaches to navigating the tensions between rights of privacy and consent and desires to share biomedical data. The focus of the workshop will be on how big data research infrastructures might be built that benefit diverse populations, especially Native Americans and indigenous peoples, respecting different approaches to owning and interpreting bodily tissues and genomic data. This project thus develops novel policy approaches to questions of science and justice, utilizing and enhancing the infrastructure of the UCSC Science and Justice Research Center (SJRC). The results of the research will be translated to broader contexts through publishing results in biomedical journals and the popular press. Videos of workshops and publications will be made available on the SJRC website.