From Patients to Petabytes: Genomic Big Data, Privacy, and Informational Risk

Abstract

Genomic big data is an emerging information technology, which presents new opportunities for medical innovation, as well as new challenges to our current ethical, social, and legal infrastructure. Rapid, affordable whole genomic sequencing translates patients’ most sensitive personal information into petabytes of digital health data. While a biomedical approach traditionally focuses on risks and benefits to the human body, the fields of Communication and Science and Technology Studies (STS) can provide some of the critical and theoretical tools necessary to navigate the newly emerging terrain of the human body as digital code. Core areas of expertise from these fields, including the Internet, the network society and the social constructions of technology, ground our discussion of the social implications of open access genomic databases, privacy, and informational risk