Abstract
The ‘self’ is often an overemphasised part of self-tracking culture. However, self-tracking is not restricted to individualised forms, but is increasingly becoming a socialised phenomenon, whereby users are incited to share with others information about their physical activities and biodata via social media and dedicated platforms. This chapter builds on previous sections, looking at the ‘communal’ aspect of self-tracking while questioning the ‘solidaristic’ dimension of data sharing. It considers this communal aspect as a form of digital biosociality and links the discussion to debates on ‘data philanthropy’. In doing so, this chapter explores some of the ideological functions of data donation and its philanthropic discourses, highlighting the emerging tensions between data ownership, data sharing and privacy issues in the context of self-tracking practices and data.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Ajana, Btihaj. 2017. Digital Health and the Biopolitics of the Quantified. Self Digital Health 3: 1–18.
Alba, Alejandro. 2016. Police, Attorneys are Using Fitness Trackers as Court Evidence. 2016. http://www.nydailynews.com/news/national/police-attorneys-fitness-trackers-court-evidence-article-1.2607432.
Babe, Ann. 2016. Wearable Fitness Devices: Who Owns Your Data? http://www.safebee.com/tech/wearable-fitness-devices-who-owns-your-data.
Baum, Stephanie. 2014. PatientsLikeMe Wants to Convince Patients to Share Health Data Through Social Media Campaign. http://medcitynews.com/2014/03/patientslikeme-social-media-campaign-hopes-encourage-patients-share-data/.
Bernal, Paul. 2013. Individual Privacy Vs Collective security? No! https://paulbernal.wordpress.com/2013/10/17/individual-privacy-vs-collective-security-no/.
Bernal, Paul. 2014. Privacy Isn’t Selfish. https://paulbernal.wordpress.com/2014/01/21/privacy-isnt-selfish/.
DataFloq. nd. The Problem With De-identification As A Privacy Control. https://datafloq.com/read/problem-de-identification-privacy-control/140.
Dwork, Cynthia, and Deirdre Mulligan. 2013. It’s Not Privacy, and It’s Not Fair. www.stanfordlawreview.org/online/privacy-and-big-data/its-not-privacy-and-its-not-fair.
Evers, M. 2014. Patients Like Me launches “Data for Good” campaign to encourage health data sharing to advance medicine. http://news.patientslikeme.com/press-release/patientslikeme-launches-data-good-campaign-encourage-health-data-sharing-advance-medic. Accessed 1 Feb 2016.
Fairfield, Joshua, and Christoph Engel. 2015. Privacy As a Public Good. https://scholarship.law.duke.edu/cgi/viewcontent.cgi?article=3824&context=dlj.
Fitbit. 2016. Privacy Policy. https://www.fitbit.com/dk/privacy.
Health Data Exploration Project. 2014. Personal Data for the Public Good: Final Report. http://hdexplore.calit2.net/wp-content/uploads/2015/08/hdx_final_report_small.pdf.
Hagen, Niclas. 2010. From Biosociality to Digital Biosociality. https://tycho5s.wordpress.com/2010/10/03/from-biosociality-to-digital-biosociality/.
Hille, Laura. 2016. The Quantified Self—Ubiquitous Control. http://www.digital-development-debates.org/issue-16-food-farming–trend–the-quantified-self-ubiquitous-control.html.
Jordan, Matthew, and Nikki Pfarr. 2014. Forget the Quantified Self. We Need to Build the Quantified Us. http://www.wired.com/2014/04/forget-the-quantified-self-we-need-to-build-the-quantified-us/.
Kirkpatrick, Robert. 2013. A New Type of Philanthropy: Donating Data. https://hbr.org/2013/03/a-new-type-of-philanthropy-don&cm_sp=Article-_-Links-_-Top%20of%20Page%20Recirculation.
Leetaru, Kalev. 2016. Are Research Ethics Obsolete in The Era of Big Data? http://www.forbes.com/sites/kalevleetaru/2016/06/17/are-research-ethics-obsolete-in-the-era-of-big-data/#5ee60571cb9a.
Lupton, Deborah. 2015. Lively Data, Social Fitness and Biovalue: The Intersections of Health Self-Tracking and Social Media. http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2666324.
Lupton, Deborah. 2016. The Quantified Self. Cambridge: Polity Press.
McGonigle, Ian V. 2016. The Collective Nature of Personalized Medicine. Genetic Research Cambridge 98 (3). http://www.ncbi.nlm.nih.gov/pubmed/26792757.
Narayanan, Arvind, and Vitaly Shmatikov. 2008. Robust De-anonymization of Large Datasets (How to Break Anonymity of the Netflix Prize Dataset). http://arxiv.org/pdf/cs/0610105.pdf?utm_source=datafloq&utm_medium=ref&utm_campaign=datafloq.
Olson, Parmy. 2014. Fitbit Data Now Being Used in The Courtroom. http://www.forbes.com/sites/parmyolson/2014/11/16/fitbit-data-court-room-personal-injury-claim/#147232c2209f.
Patients Like Me. 2014. PatientsLikeMe Launches ‘Data for Good’ Campaign to Encourage Health Data Sharing to Advance Medicine. http://news.patientslikeme.com/press-release/patientslikeme-launches-data-good-campaign-encourage-health-data-sharing-advance-medic.
Pennic, Fred. 2014. Is Your Self-Tracking Health App or Device Really Secure? http://hitconsultant.net/2014/08/21/is-your-self-tracking-health-app-or-device-really-secure/.
Peppet, Scott R. 2011. Unraveling Privacy: The Personal Prospectus & The Threat of a Full Disclosure. Northwest University Law Review. https://www.law.northwestern.edu/lawreview/v105/n3/1153/LR105n3Peppet.pdf.
Quantified Self. 2015. The 2015 Quantified Self Public Health Symposium. https://medium.com/quantified-self-public-health/the-2015-quantified-self-public-health-symposium-e8cab0be1dd1#.lj5hjjetq.
Rabinow, Paul. 1996. Essays on the Anthropology of Reason. New Jersey: Princeton University Press.
Raghupathi, Wullianallur, and Viju Raghupathi. 2014. Big data analytics in healthcare: Promise and Potential. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4341817/#CR14.
Rhodes, Harry. 2014. Accessing and Using Data from Wearable Fitness Devices. http://bok.ahima.org/doc?oid=107442#.V5ePSY5zogs.
Schoen, Seth. 2009. What Information is “Personally Identifiable”? https://www.eff.org/deeplinks/2009/09/what-information-personally-identifiable.
Scholz, Sally J. 2015. Seeking Solidarity. Philosophy Compass 10 (10): 725–735.
Sharon, Tamar. 2016. Self-Tracking for Health and the Quantified Self: Re-Articulating Autonomy, Solidarity, and Authenticity in an Age of Personalized Healthcare. Philosophy and Technology 30 (1): 93–121.
Swan, M. 2012. Sensor mania: The internet of things, wearable computing, objective metrics, and the quantified self 2.0. J Sens Actuator Networks 1: 217–253.
Symantec. 2014. How safe is Your Quantified Self? 2014. https://www.symantec.com/content/dam/symantec/docs/white-papers/how-safe-is-your-quantified-self-en.pdf.
UNGP. 2011. Data Philanthropy: Public & Private Sector Data Sharing for Global Resilience. http://www.unglobalpulse.org/blog/data-philanthropy-public-private-sector-data-sharing-global-resilience.
UnitedHelthcare. 2016. Get Rewarded Instantly! https://broker.uhc.com/assets/UHCEW645218_RewardMe_Flyer%20FINAL.pdf.
Wolf, Gary, and Ernesto Ramirez. 2014. Quantified Self/Public Health Symposium. http://quantifiedself.com/symposium/Symposium-2014/QSPublicHealth2014_Report.pdf.
Wolf, G. 2010. The data-driven life. http://www.nytimes.com/2010/05/02/magazine/02self-measurement-t.html?_r=0. Accessed 1 Feb 2016.
Yakowitz, Jane. 2011. Tragedy of the Data Commons. https://works.bepress.com/jane_yakowitz/1/.
Acknowledgements
The research for this chapter has been conducted as part of the author’s Marie Curie Fellowship project, supported by the European Union’s Seventh Framework Programme under grant agreement no 609033.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2018 The Author(s)
About this chapter
Cite this chapter
Ajana, B. (2018). Communal Self-Tracking: Data Philanthropy, Solidarity and Privacy. In: Ajana, B. (eds) Self-Tracking. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-65379-2_9
Download citation
DOI: https://doi.org/10.1007/978-3-319-65379-2_9
Published:
Publisher Name: Palgrave Macmillan, Cham
Print ISBN: 978-3-319-65378-5
Online ISBN: 978-3-319-65379-2
eBook Packages: Social SciencesSocial Sciences (R0)