Computer Supported Cooperative Work (CSCW)

, Volume 25, Issue 2, pp 115–136

Genomic Big Data and Privacy: Challenges and Opportunities for Precision Medicine

  • Julie Frizzo-Barker
  • Peter A. Chow-White
  • Anita Charters
  • Dung Ha
Article

DOI: 10.1007/s10606-016-9248-7

Cite this article as:
Frizzo-Barker, J., Chow-White, P.A., Charters, A. et al. Comput Supported Coop Work (2016) 25: 115. doi:10.1007/s10606-016-9248-7

Abstract

Genome science is rapidly shifting from research labs and biobanks to the clinical setting. The resulting genomic big data, or large-scale networked genetic material, is a disruptive technology. On one hand, clinical genomics advances life-saving innovation through precision medicine. On the other, the digital databases they are built upon raise new concerns for informational risk to personal privacy. While a traditional biomedical approach focuses on risks and benefits to the human body, our socio-technical analysis sheds lights on the emerging terrain of the human body as digital code. In this paper, we analyze emerging issues related to clinical genomics based on a 3-year collaborative clinical research project to develop a genomic test for Acute Myeloid Leukemia (AML) cancer in British Columbia (BC), the first of its kind in Canada. We found the most pressing issues for genomic researchers and clinicians were challenges around informed consent, return of results and return of incidental findings. In light of technological advances and the emerging context of networked privacy, we outline several recommendations for best practices in diffusing clinical genomics to the healthcare system.

Keywords

Big data Databases DNA Genomics Healthcare Precision medicine Privacy Informational risk Information technology 

Copyright information

© Springer Science+Business Media Dordrecht 2016

Authors and Affiliations

  • Julie Frizzo-Barker
    • 1
  • Peter A. Chow-White
    • 1
  • Anita Charters
    • 1
  • Dung Ha
    • 1
  1. 1.School of CommunicationSimon Fraser UniversityBurnabyCanada

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