This post is part of Bill of Health’s ongoing blog symposium on Critical Studies of Citizen Science in Biomedical Research. Here, Dana Mahr examines claims of empowerment in participatory health platforms and the implications of this for participants and biomedical research more broadly. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.
By Dana Mahr
A new social contract for health?
Since the beginning of the 21st Century, self-reported experiential knowledge of patients (alongside other data) has often been communicated and promoted as an untapped treasure for both medical research and patient empowerment (Goetz 2008). Although this portrayal lacks historical and sociological accuracy (the sharing of experience has always been part of medical practice; e.g. the process of anamnesis) it informs a prominent discourse on so-called “P4-medicine”: “prediction”, “prevention”, “participation” and “personalization” (Hood 2013). Within this coordinate system of concepts, practices of participatory self-reporting (via fitness tracking, information sharing in social health networks, etc.) are seen as steps towards a “New Social Contract for Medical Innovation” (Horne et al. 2015).
Advocates of this social contract claim that it “tackle[s] the rising tide of chronic diseases and transform[s] healthcare from a disease-oriented provision to a true health maintenance service” (Horne et al. 2015). The core element of this new social contract is the collection and use of large amounts of participatory generated data for the democratization of biomedical research. The growing variety of online participatory medicine platforms can be interpreted as part of this trend. Other relevant aspects, however, are market interests, bio-governmentality, and people’s curiosity for self-exploration, self-presentation, and the urge to compare oneself with others. This is most evident in direct-to-consumer (DTC) genetic testing. The slogan of the DTC company 23andMe is telling in this respect: “Welcome to you”.
As the gender studies scholar Lindsey Whitmore states: Participatory medicine platforms or DTC genomic testing companies “facilitate an encounter with the ‘biological self’ (…) that produces forms of bodily autonomy, agency, identity, and connectivity in context of biomedicine and the illness experience, while simultaneously enfolding bodies into more complex regimes of self-regulation, monitoring, hyper-vigilance and governmentality, explicitly in the name of data-generated profit” (Whitmore 2012, p. 2-3). All this is made possible through online practices of gathering and sharing “health data” and experiential knowledge. But the question remains: Why do people share intimate information about their health in huge online platforms that blur their boundaries with large biomedical companies? I suggest that they do it as part of a moral economy of self-reporting.
A moral economy of self-reporting
Participatory online medicine platforms as well as direct-to-consumer genomic companies advertise and justify their collecting activities by inviting potential participants to “donate (…) (their) data for (…) themselves, for others, for good” (PatientsLikeMe), to help “accelerating research” because “your own genetics could help find the answer to someone else’s disease” (23andMe), for “democratizing research” (23andMe), or to “empower” patients through self-reporting (PatientsLikeMe). This shows that health platforms use an activating language that sometimes even imitates aspects of classic social activism like the feminist women’s health movement. Towards this, they claim that there is a “defect” or “abuse” in the medical system and research that needs to be fixed by “empowering” patients to share their “health-data” and “healthcare experiences” as well as to “connect with others” (PatientsLikeMe). While such platforms play on classic topics of health movements like gender or ethnicity, they re-frame them in terms of self-reporting, as a both positive and self-preserving “lifestyle”, and as a new way to enhance scientific research by helping others. The “Women’s health study” of the self-described “citizen science start-up” and DTC company uBiome is paradigmatic for this (see Mohammadi 2013). Since December 2015 the enterprise has invited cis-gendered women to share samples of their vaginal microbiome along with reports of their individual experiences in order to learn more about the menstrual cycle, gain agency towards menstruation, connect with other women who want to learn more about menstruation, and help in the discovery of new findings about changes in the female microbiome during menstruation (uBiome). All these claims – learning about oneself, to communicate, to gain agency, to connect with others, and to produce new knowledge – rhetorically mimic the practices of women’s health collectives in the 1970s, and serve to establish self-reporting as a moral economy (Los Angeles Women’s Health Center 1973; Frankfort 1973; Span 1980).
Embedded in the communication and advertising strategies of internet health platforms which construct the moral economy of self-reporting is an implicit critique of the medical system, regulatory agencies, and regulatory practices. When the FDA started to critically discuss the value and risks of direct-to-consumer genetic testing in 2012, Carole Kushnir, a 23andMe customer, opened a widely read thread in one of the company’s community forums. She directly addressed the FDA: “Don’t stand between me and my DNA!” (Jones 2013, p. 152). Another example of this is the justification of data collection by claiming that “Openness is a good thing” and that classic forms of privacy policies slow down the research that actually could help patients like you and me to gain better treatment (PatientsLikeMe). Potential customers of online health platforms are thereby not only nudged into self-reporting, but are also encouraged to develop a critical stance towards the established legal institutions that were build to protect their privacy (Cohen 2013). Being open with one’s own “health data” and illness experiences is framed within the world of online health platforms as a triple win situation: helping yourself, helping others, helping science.
My intention here is not to judge this way of data-production and re-thinking privacy as intrinsically good or bad. Because users of online health platforms report that they actually feel empowered and included into processes of knowledge production by sharing information about themselves: Connecting with others, learning about treatment options, sharing their illness narratives, and providing their data publicly for science has enormous “lifeworld-value” (Rehmann Sutter and Mahr 2016).
But beyond the reality of this emerging online practice we must ask if we are (on the normative level) in the need of new ethos of data production and privacy. Shall self-reporting become a part of healthcare and research regulations for the 21st Century? And most importantly: Which role shall the willingness of participants to self-report play within it – e. g. in terms of becoming an active, informed, co-productive, and self-empowered scientific citizen?
Stay tuned for more posts in the Citizen Science Blog Symposium!