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Computer Supported Cooperative Work (CSCW)

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01.06.2016

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

verfasst von: Julie Frizzo-Barker, Peter A. Chow-White, Anita Charters, Dung Ha

Erschienen in: Computer Supported Cooperative Work (CSCW) | Ausgabe 2-3/2016

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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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1000 Genomes. (2015). Retrieved June 14, 2015, from http://www.1000genomes.org/data

Ackerman, Mark S. (2000). The Intellectual Challenge of CSCW: The Gap between Social Requirements and Technical Feasibility. Human–Computer Interaction, vol. 15, nos. 2–3, 179–203.

Allyse, Megan, Katrina Karkazis, Sandra Soo Jin Lee, Sara L. Tobin, Henry T. Greely, Mildred K. Cho, and David Magnus (2012). Informational Risk, Institutional Review, and Autonomy in the Proposed Changes to the Common Rule. IRB: Ethics and Human Research, vol. 34, no. 3, pp. 17–19.

Bennett, Colin J, Kevin D. Haggerty, David Lyon, and Valerie Steeves (2014). Transparent Lives: Surveillance in Canada. Edmonton, AB: Athabasca University Press.

Bietz, Matthew J, Eric P. S. Baumer, and Charlotte P. Lee (2010). Synergizing in Cyberinfrastructure Development. Computer Supported Cooperative Work (CSCW), vol. 19, nos. 3–4, 245–281.

Blumenthal-Barby, Jennifer S., Amy L. McGuire, Robert C. Green, and Peter A. Ubel (2015). How behavioral economics can help to avoid “The last mile problem” in whole genome sequencing. Genome Medicine, vol. 7, no. 1, art. 3.

Boczkowski, Pablo, and Leah A. Lievrouw (2008). Bridging STS and communication studies: Scholarship on media and information technologies. In Edward J. Hackett, O. Amsterdamska, M. Lynch, & J. Wajcman (Eds.), The Handbook of Science and Technology Studies (pp. 949–977). Cambridge, MA: MIT Press.

Bowker, Geoffrey C. (2005). Memory practices in the sciences. Cambridge, MA: MIT Press.

Bowker, Geoffrey C., and Susan Leigh Star (2000). Sorting Things Out: Classification and Its Consequences. Cambridge, MA: MIT Press.

Boyd, Danah. (2010). Making Sense of Privacy and Publicity. http://www.danah.org/papers/talks/2010/SXSW2010.html . accessed 10 March 2015.

Boyd, Danah. (2012). Networked Privacy. Surveillance & Society, vol. 10, nos. 3/4, pp. 348–350.

Burn-Murdoch, John (2012, Oct. 26). Big data: what is it and how can it help? http://www.theguardian.com/news/datablog/2012/oct/26/big-data-what-is-it-examples, accessed 12 March, 2015.

Bush, William S., and Jason H. Moore (2012). Chapter 11: Genome-Wide Association Studies. PLoS Comput Biol, vol. 8, no. 12, e1002822.

Castells, Manuel (2000). The Rise of the Network Society: The Information Age: Economy, Society, and Culture. Malden, MA: Blackwell.

Caulfield, Timothy A., and Bartha Maria Knoppers (2010). Consent, privacy & research biobanks (Policy Brief No.1). Genome Canada. http://www.genomecanada.ca/medias/pdf/en/GPS-Policy-Directions-Brief.pdf

CDC, Public Health Genomics at. (2010). Genomics|Genetic Testing|ACCE. http://www.cdc.gov/genomics/gtesting/ACCE/index.htm, accessed 14 March, 2015.

Check Hayden, Erika (2013). Privacy loophole found in genetic databases. Nature News.

Chow-White, Peter A. and Miguel García-Sancho (2012). Bidirectional Shaping and Spaces of Convergence Interactions between Biology and Computing from the First DNA Sequencers to Global Genome Databases. Science, Technology & Human Values, vol. 37, no. 1, 124–164. 10.1177/0162243910397969

Chow-White, Peter A. and Sandy Green, Jr. (2013). Data Mining Difference in the Age of Big Data: Communication and the Social Shaping of Genome Technologies from 1998 to 2007. International Journal of Communication, 7(0), 28. Retrieved from http://ijoc.org/index.php/ijoc/article/view/1459, accessed 17 June, 2014.

Collins, Francis S., Michael Morgan, and Aristides Patrinos (2003). The Human Genome Project: Lessons from Large-Scale Biology. Science, vol. 300, no. 5617, pp. 286–290.

Condit, Celeste M. (2007). How Culture and Science Make Race “Genetic”: Motives and Strategies for Discrete Categorization of the Continuous and Heterogeneous. Literature and Medicine, vol. 26, no. 1, pp. 240–268.

Condit, Celeste Michelle, Roxanne L. Parrott, Tina M. Harris, John Lynch, and Tasha Dubriwny (2004). The Role of “Genetics” in Popular Understandings of Race in the United States. Public Understanding of Science, vol. 13, no. 3, pp. 249–272.

Contreras, Jorge L. (2010). Bermuda’s Legacy: Policy, Patents and the Design of the Genome Commons (SSRN Scholarly Paper No. ID 1667659). Rochester, NY: Social Science Research Network. http://papers.ssrn.com/abstract=1667659

CTV (2015). Blood pressure drug shrinks cancer in “miracle” clinical trial. http://bc.ctvnews.ca/blood-pressure-drug-shrinks-cancer-in-miracle-clinical-trial-1.2271586, accessed 13 March, 2015.

Friedman, Jan (2013). The UBC Medical Curriculum and the Genomic Revolution. University of British Columbia Medical Journal, vol. 4, no. 2. www.ubcmj.com/pdf/ubcmj_4_2_2013_6-8.pdf

Frizzo-Barker, Julie, and Peter A. Chow-White (2014). From Patients to Petabytes: Genomic Big Data, Privacy, and Informational Risk. Canadian Journal of Communication, vol. 39, no. 4.

Fuchs, Christian (2013). Social Media: A Critical Introduction. London: SAGE.

Gandy, Oscar H. (1993). The Panoptic Sort: A Political Economy of Personal Information. Boulder, CO: HarperCollins Canada.

Gavison, Ruth. (1980). Privacy and the Limits of Law. The Yale Law Journal, vol. 89, no. 3, pp. 421–471.CrossRef

Gerlach, Neil, and Sheryl N. Hamilton (2005). From Mad Scientist to Bad Scientist: Richard Seed as Biogovernmental Event. Communication Theory, vol. 15, no. 1, pp. 78–99.

Gibson, Elaine, Kevin Brazil, Michael D. Coughlin, Claudia Emerson, Francois Fournier, Lisa Schwartz, Karen V. Szala-Meneok, Karen M. Weisbaum, and Donald J. Willison (2008). Who’s minding the shop? The role of Canadian research ethics boards in the creation and uses of registries and biobanks. BMC Medical Ethics, vol. 9, no. 1, art. 17.

Gordon, Dan, and Aditya Pai (2012). BIG data, BIG opportunity. Canadian Healthcare Manager, vol. 1, no. 2, pp. 25–27.

Gulland, Anne. (2010). Project to decode genomes in cancer samples promises new treatments. BMJ, vol. 340, c2149.CrossRef

Hackett, Edward J. (2008). The Handbook of Science and Technology Studies. Cambridge, MA: MIT Press.

HapMap Project. (2015). http://hapmap.ncbi.nlm.nih.gov/, accessed 14 June, 2015.

Hockings, Edward, and Coyne, Lewis (2015). Privacy and the 100,000 Genome Project. The Guardian. Retrieved from https://www.theguardian.com/science/political-science/2015/mar/10/privacy-and-the-100000-genome-project, accessed 19 Febuary 2015.

Homer, Nils, Szabolcs Szelinger, Margot Redman, David Duggan, Waibhav Tembe, Jill Muehling, John V. Pearson, Dietrich A. Stephan, Stanley F. Nelson, and David W. Craig (2008). Resolving Individuals Contributing Trace Amounts of DNA to Highly Complex Mixtures Using High-Density SNP Genotyping Microarrays. PLoS Genetics, vol. 4, no. 8.

Hudson, Kathy. L. (2011). Genomics, Health Care, and Society. New England Journal of Medicine, vol. 365, no. 11, pp. 1033–1041.

IBM (2012). What is big data? http://www-01.ibm.com/software/data/bigdata/what-is-big-data.html, accessed 12 March 2015.

ICGC: International Cancer Genomics Consortium Data Portal (2015). https://dcc.icgc.org/, accessed 14 June 2015.

Jirotka, Marina, Charlotte P. Lee, and Gary M. Olson (2013). Supporting Scientific Collaboration: Methods, Tools and Concepts. Computer Supported Cooperative Work (CSCW), vol. 22, nos. 4–6, pp. 667–715.

Jurgenson, Nathan (2012). When Atoms Meet Bits: Social Media, the Mobile Web and Augmented Revolution. Future Internet, vol. 4, no. 1, pp. 83–91.CrossRef

Kaye, Jane (2012). The Tension Between Data Sharing and the Protection of Privacy in Genomics Research. Annual Review of Genomics and Human Genetics, vol. 13, no. 1, pp. 415–431.CrossRef

Kitchin, Rob (2014). The Data Revolution: Big Data, Open Data, Data Infrastructures and Their Consequences (1st edition). Thousand Oaks, CA: SAGE Publications Ltd.

Kosseim, Patricia, Edward S. Dove, Carman Baggaley, Eric M. Meslin, Fred H. Cate, Jane Kaye, Jennifer R- Harris, and Bartha M. Knoppers (2014). Building a data sharing model for global genomic research. Genome Biology, vol. 15, no. 8.

Latour, Bruno. (2007). Beware your imagination leaves digital traces. Times Higher Literary Supplement. http://www.bruno-latour.fr/node/245

Lévesque, Emmanuelle, Yann Joly, and Jacques Simard (2011). Return of Research Results: General Principles and International Perspectives. The Journal of Law, Medicine & Ethics, vol. 39, no. 4, pp. 583–592.

Libert, Tim (2014). Privacy Implications of Health Information Seeking on the Web (SSRN Scholarly Paper No. ID 2423006). Rochester, NY: Social Science Research Network. http://papers.ssrn.com/abstract=2423006

Lunshof, Jeantine E., Ruth Chadwick, Daniel B. Vorhaus, and George M. Church. (2008). From genetic privacy to open consent. Nature Reviews Genetics, vol. 9, no. 5, pp. 406–411.

Lyon, David (2005). Surveillance as social sorting: computer codes and mobile bodies. In Surveillance as Social Sorting: Privacy, Risk and Automated Discrimination (pp. 13–30). London: Routledge.

MacKenzie, Donald, and Judy Wajcman (Eds.). (1999). The Social Shaping of Technology (2nd edition). Buckingham Eng.; Philadelphia: McGraw Hill Education / Open University.

Manovich, Lev (2001). The Language of New Media. Cambridge, MA: MIT Press.

Marris, Emma (2005). Free genome databases finally defeat Celera. Nature, vol. 435, no. 7038, 6–6.CrossRef

Mayer-Schönberger, Viktor, and Kenneth Cukier (2013). Big Data: A Revolution That Will Transform How We Live, Work, and Think. Boston: Eamon Dolan/Houghton Mifflin Harcourt.

McLuhan, Marshall (1964). Understanding Media: The extensions of man. New York, NY: McGraw Hill.

Nissenbaum, Helen F. (2010). Privacy in context: technology, policy, and the integrity of social life. Stanford, CA: Stanford Law Books.

Pálsson, Gisli and Paul Rabinow (2001). The Icelandic genome debate. Trends in Biotechnology, vol. 19, no. 5, pp. 166–171. doi:10.1016/S0167-7799(01)01607-9

Pasquale, Frank (2015a). The Black Box Society: The Secret Algorithms That Control Money and Information. Cambridge, MA: Harvard University Press.

Pasquale, Frank. (2015b, March 2). Can a Genetic Test Be Anonymous? The New York Times. http://www.nytimes.com/roomfordebate/2015/03/02/23andme-and-the-promise-of-anonymous-genetic-testing-10/insure-people-against-genetic-data-breaches

Pollack, Andrew (2009, August 18). DNA Evidence Can Be Fabricated, Scientists Show. The New York Times. http://www.nytimes.com/2009/08/18/science/18dna.html

Pollack, Andrew (2011, November 30). DNA Sequencing Caught in Deluge of Data. The New York Times. http://www.nytimes.com/2011/12/01/business/dna-sequencing-caught-in-deluge-of-data.html

Pool, Ithiel de Sola (1983). Technologies of freedom. Cambridge, MA: Belknap Press.

Presidential Commission for the Study of Bioethical Issues (PCSB) (2012). Privacy and Progress in Whole Genome Sequencing. http://bioethics.gov/sites/default/files/PrivacyProgress508_1.pdf

Presidential Commission for the Study of Bioethical Issues (PCSB) (2013). Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research and Direct-to-Consumer Contexts. bioethics.gov/sites/default/files/FINALAnticipateCommunicate_PCSBI_0.pdf

Rainie, Lee (2015). Networked Privacy in the Age of Surveillance, Sousveillance, Coveillance. http://www.pewinternet.org/2015/01/23/networked-privacy-in-the-age-of-surveillance-sousveillance-coveillance/, accessed 2 February, 2015.

Regalado, Antonio (2015 2–18). Networks of Genome Data Will Transform Medicine. http://www.technologyreview.com/featuredstory/535016/internet-of-dna/ , accessed 8 March, 2015.

Rukovets, Olga (2014). FDA to 23andMe: “Stop Marketing Genetic Tests.” Neurology Today, vol. 14, no. 2, pp. 1,11–14.

Schadt, Eric E., Sangsoon Woo, and Ke Hao (2012). Bayesian method to predict individual SNP genotypes from gene expression data. Nature Genetics, vol. 44, no. 5, pp. 603–608.

Schuurman, Nadine, and Ellen Balka (2008). alt.metadata.health: Ontological Context for Data Use and Integration. Computer Supported Cooperative Work (CSCW), vol. 18, no. 1, pp. 83–108.

Solove, Daniel J. (2008). Understanding privacy. Cambridge, Mass: Harvard University Press.

Star, Susan Leigh (1999). The Ethnography of Infrastructure. American Behavioral Scientist, vol. 43, no. 3, pp. 377–391.

Strasser, Bruno J. (2012). Data-driven sciences: From wonder cabinets to electronic databases. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences, vol. 43, no. 1, pp. 85–87.

Thacker, Eugene (2004). Biomedia (1st edition). Minneapolis: Univ. of Minnesota Press.

Thacker, Eugene (2005). The Global Genome: Biotechnology, Politics, and Culture (1st edition). Cambridge, Mass: The MIT Press.

Wei, Sisi, and Charles Ornstein (2015). Over 1,100 Health Data Breaches, but Few Fines. ProPublica, 27 February 2015 https://projects.propublica.org/graphics/healthcare-data-breaches, accessed 7 March, 2015.

Williams, Raymond (1975). Television: Technology and cultural form. New York, NY: Schocken Books.

Wright, Caroline, Hilary Burton, Alison Hall, Sowmiya Moorthie, Anna Pokorska-Bocci, Gurdeep Sagoo, Simon Sanderson, and Rosalind Skinner (2011). Next steps in the sequence: The implications of whole genome sequencing for health in the UK. PHG Foundation. http://www.phgfoundation.org/reports/10364/.

Zhao, Jun, Oscar Corcho, Paolo Missier, Khalid Belhajjame, David Newmann,David de Roure and Carole A. Goble (2011). eScience. In John Domingue, Dieter Fensel, and James A. Hendler (Eds.), Handbook of Semantic Web Technologies (pp. 701–736). Springer Berlin Heidelberg.

Titel: Genomic Big Data and Privacy: Challenges and Opportunities for Precision Medicine
verfasst von: Julie Frizzo-Barker
Peter A. Chow-White
Anita Charters
Dung Ha
Publikationsdatum: 01.06.2016
Verlag: Springer Netherlands
Erschienen in: Computer Supported Cooperative Work (CSCW) / Ausgabe 2-3/2016
Print ISSN: 0925-9724
Elektronische ISSN: 1573-7551
DOI: https://doi.org/10.1007/s10606-016-9248-7

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