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

Authors

  • Julie Frizzo-Barker Simon Fraser University
  • Peter Chow-White Simon Fraser University

DOI:

https://doi.org/10.22230/cjc.2014v39n4a2743

Keywords:

Genomics, Big data, Personalized medicine, Privacy, 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.

Le « Big Data » en génomique est une technologie de l’information émergente, qui offre de nouvelles possibilités pour l’innovation médicale et présente de nouveaux défis pour nos structures éthique, sociale et juridique. Un séquençage génomique rapide et abordable, convertit les renseignements personnels les plus sensibles des patients en pétaoctets de données numériques de santé. Tandis que l’approche biomédicale traditionnellement se concentre sur les risques et les bénéfices pour la santé, les Études de la Communication, de la Science et de la Technologie (STS) peuvent fournir certains outils critiques et théoriques nécessaires afin d’explorer le terrain émergent de la représentation numérique du corps humain. Les domaines principaux de ces champs d’étude dont l’Internet, la société en réseau et les constructions sociales de la technologie, forment la base de notre discussion sur les implications sociales de l’accès ouvert aux bases de données génomiques, la confidentialité et les risques liés au stockage et la diffusion de l’information.

Author Biographies

Julie Frizzo-Barker, Simon Fraser University

Julie Frizzo-Barker is a PhD student in the School of Communication at Simon Fraser University. Her research focuses on the social impacts of new media and information technologies, specifically smartphones, social media, big data and data-mining. Her latest work, co-authored with Peter Chow-White, was published in Feminist Media Studies: “There’s an App for that: Mediating the Mobile Moms and the Connected Careerists Through Smartphones and Networked Individualism.” Email: jfrizzob@sfu.ca

Peter Chow-White, Simon Fraser University

Peter Chow-White is Associate Professor in the School of Communication and Director of the Genomics and Networks Analysis (GeNA) Lab at Simon Fraser University and Associate Professor in the Faculty of Medicine at the University of British Columbia in Vancouver, Canada. He is co-author with Lisa Nakamura of the edited book Race After the Internet from Routledge. His work has appeared in Communication Theory, the International Journal of Communication,Media, Culture & SocietyScience, Technology & Human Values, and PLoS Medicine. E-mail: petercw@sfu.ca

Published

2014-11-20