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

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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.

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Acknowledgments

Funding for this research was provided by a grant from Genome British Columbia Personalized Medicine Program (Grant #121AML PMP).

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Authors and Affiliations

  1. School of Communication, Simon Fraser University, 8888 University Drive, Burnaby, V5A 1S6, BC, Canada

    Julie Frizzo-Barker, Peter A. Chow-White, Anita Charters & Dung Ha

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  1. Julie Frizzo-Barker
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  2. Peter A. Chow-White
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Correspondence to Julie Frizzo-Barker.

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Frizzo-Barker, J., Chow-White, P.A., Charters, A. et al. Genomic Big Data and Privacy: Challenges and Opportunities for Precision Medicine. Comput Supported Coop Work 25, 115–136 (2016). https://doi.org/10.1007/s10606-016-9248-7

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