On Becoming Data Citizens in Contemporary & Future Well-being Service Ecosystems: Personal Genomics & Quantified Selves Judith Gregory EVOKE & Values in Design Lab Department of Informatics, UC-Irvine judithgr@uci.edu Acknowledgement: J. Gregory and G. C. Bowker Chapter in D. Nafus, Editor, Biosensors in Everyday Life: Getting a Sense of Things with Technologies, Bodies, and Everyday Forms of Measurement. The MIT Press, 2016
Evolving Contemporary & Future Well-Being Service Ecosystems New modes of ethnography on contemporary & future well-being Becoming data citizens prompts new forms of data work Digital literacies on shared shared personal data Lacunae on terms and conditions On research ethics: time for a new Belmont Report?
Contemporary landscapes now include: Precision Medicine also known as translational biomedical informatics Genomics-based personalized medicine Personal genomics Personal health records & personal health portals (individual, shared, collective) Patient 2.0 and social media (Quantified Selves and more) Pervasive and ubiquitous computing (smart sensors & environments) Persuasive technologies
Living Algorithmically Quantified Selves Qualified Selves Personal Genomics Data Citizens Image of the connected self from http://gigaom.com/2013/10/13/consolidatethis-quantified-self-edition/
Acknowledgements to our colleagues in the EVOKE & Values in Design Lab & the Intel Science & Technology Consortium Personal Genomics & Quantified Self: ongoing Mathew J. Bietz, Judith Gregory, Geoffrey C. Bowker Robert Wood Johnson Foundation & a generous seed grant from the Intel Science and Technology Center for Social Computing in relation to the research themes Algorithmic Living & Information Ecosystems.
participation of publics The case of translational biomedical informatics
The Privacy Paradox When you ask people if they care about their data, they say they do. If you look at their practices, many actually don t That s why we need ethnography to understand practices -- not only opinions -- to get at what people are actually doing
New kinds of data work: Knowledge transformations Social communities making knowledge Personal genomics communities developing their own healths Personal health & fitness data prompting new social communities Some are based around devices, apps or technologies -- some not Potential to lead to new kinds of research, science & caring practices
New kinds of data work: Knowledge transformations Walking cities multi-city, cities losing weight collectively Sleep research transformed From being in special cocoons to being at home
The Data Citizen Project In the Evoke & Values in Design Lab, Department of Informatics, UC-Irvine, and with many partners, we analyze the ways in which cultural, legal, policy, ethical and social issues are raised by the big data movement and suggest ways to address these issues. Who owns your data, who looks at it and how is it used?
Data Citizen The rise of the quantified self and personal genomics movements pose fundamental questions about the nature of citizenship that go well beyond the confines of the reductive concept of privacy. Further, as we live more and more algorithmically through self-tracking, our identities are necessarily being caught up in the cloud.
For considering the Design Policy Knot, we take a design orientation towards the policy knot articulated by Steven Jackson et al. (2014) The Policy Knot: Re-integrating Policy, Practice and Design in CSCW Studies of Social Computing Jackson, S. J., Gillespie, T. & Payette, S. CSCW'14, Feb 15-19, 2014. ACM 978-1-4503-2540-0/14/02.
The Policy Knot Too often (when policy is thought about at all) it is imagined to come after design and practice, in both time and importance. Under this basically linear presumption, emergent technologies are first designed [emphasis added]; users then adopt and adapt them in contexts of situated practice; and on occasion, when a dispute emerges, aggrieved stakeholders turn to public agencies or the courts to clean up the mess (Jackson et al. 2014)
The Design Policy Knot Policy + Design + Practices + 3 things that are interwoven in new forms of data work Design Policy Knot Borromean ring (intertwining policy, practice and design)
Design Policy Knot Borromean ring (intertwining policy, practice and design) In mathematics, the Borromean rings [a] consist of three topological circles which are linked and form a Brunnian link (i.e., removing any ring results in two unlinked rings). In other words, no two of the three rings are linked with each other as a Hopf link, but nonetheless all three are linked.
Data Citizen Project Data Commons & Governance How and why are people willing to share data about themselves, for example, willingness to share personal data in a data commons? What kinds of governance and circumstances might make available the data collected from individuals, whereby researchers might make use of self-tracked data in their research, and by which individuals are willing to share their data?
Historically the app came first, followed by the policy consequences afterwards resulting in knots In QS and personal genomics there s a much tighter and more rapid connection from the beginning in policy, design and practice with policy not yet relevant enough to the kinds of infrastructures that are evolving [emphasis added] Not only related to infrastructures but because social practices are changing lending autonomy to social practices. And tightness of health interweaving
A surprising result already has been the marked willingness of individuals to share their personal genomic data with other parties -- even in many cases non-anonymously for the public good. The Data Citizen Project Living algorithmically through shared self-tracking in quantified communities is also about our relationships with data about ourselves.
Robert Wood Johnson Foundation (U.S.) orients towards creatively disruptive technologies for public health Translational Biomedical Informatics -> now also known as Precision Medicine 1 Million Veterans contributing blood samples (anonymously) Renewed Framingham longitudinal study in a city (50+ years epidemiological study) http://en.wikipedia.org/wiki/framingham_heart_study Personal Genome Project based at Harvard offers data commons participation http://www.ncbi.nlm.nih.gov/pmc/articles/pmc3275804/ Kaiser Permanente with University of California San Francisco: 250,000+ member-patients have contributed blood samples that redound from individuals to families Country scale: Finland Project Morfeus: Transformation of the health sector project across sectors, technologies & practices on a country scale
From Data Citizen & Big Data to Potentialities for Contemporary & Future Well-being Service Ecosystems
Prediction & Predictabilities
Prediction & Predictabilities Let s not forget the un-predictabilities
Quantified selves: The body politic
Invisibility & Visibilities
"Our Self-Portrait: the Human Microbiome" by Joana Ricou
We consider personal genomics at 5 scales: 1 one s past, present, future 2 one s self, family, ancestors & the future 3 one s genes, one s markers, one s health 4 data big and small, innately intimate data 5 the social, cultural, new communities For each we offer a haiku to express the condensed essences of these phenomenal layers.
Haiku for Scale 1: one s past, present, future The Normal and the Pathological* Alleles switch and change place Passenger and driver Context is everything * Canguilhem, Georges. 1991. The Normal and the Pathological, with an introduction by Michel Foucault. New York: Zone Books.
Haiku for Scale 2: one s self, family, ancestors & the future Unexpected utopias alongside dystopias It never occurred to me That this could become About undoing stigma
Haiku for Scale 3: one s genes, one s markers, one s health Transformations of knowledge Genomics bio-mantra Predictive, proactive Preventive - but not always
Haiku for Scale 4: data big and small, innately intimate data Corporeal and corporate landscapes Personal genomics Are all at once ancestral Temporally back and forth
Haiku for Scale 5: the social, the cultural, new communities Altruism and reciprocity Walking our cities One million veterans Framingham renewals
And a 6 th Haiku on knowledge transformations, things falling apart and coming together anew* Science spins 360º Reversals, re-births of scientific knowledge * Inspired by Russ Altman s Years-In-Review for Translational Biomedical Informatics, http://www.gettinggeneticsdone.com/2014/04/russ-altmans-translational.html
We seek to contribute to a fundamental understanding of ways in which living algorithmically and living with everyday analytics through shared self-tracking in quantified communities is also about our relationships with data about ourselves and others.
We conclude as we began by highlighting altruism, reciprocity and immanence