Quantified Self: from a citizen movement to an institutionalized behavior

The Quantified Self (hereafter: QS) is a citizen movement that uses self-measurement of physical, physiological, environmental, behavioral, and/or biological parameters. This practice has been democratized with the multiplication of connected self-measurement devices, as well as health and well-being applications. QS enthousiasts may adopt a “healthier” lifestyle based on recommendations derived from the collected data. In health technologies, QS differs from eHealth, mHealth, and telehealth.

QS demonstrates its potential in the fight against non-communicable diseases. These diseases are caused by various factors such as genetics, physiology, environment, or behavior of an individual, and they can be devided into four categories: cardiovascular diseases, cancers, chronic respiratory diseases, and diabetes. Some of these factors are directly measurable in the QS.

It is worth mentioning that connected self-measurement devices and wellness apps remain in a gray area regarding medical device regulations. In Switzerland, a good number of QS tools do not fall under Art. 4 par. 1 lit. b TPA and Art. 3 MedDo. This increases the risks concerning the reliability and safety of these instruments, as no specific marketing authorization is required.

Identified dangers related to Quantified Self

The connected wearable technology and wellness applications market is currently dominated by the private sector of Big Tech (Google, Apple, Amazon, …). Due to their economic power, these companies have significant investment capacity and contribute to the sector’s rapid development – as witnessed in the development of COVID-19-related applications. However, their market domination creates a risk to users’ rights by drastically limiting the diversity of service providers in the context of self-measurement.

The sensitive personal data (Art. 3 lit. a and c FADP) collected in the framework of the QS are at the origin of two major concerns. The first one concerns their protection. Just like any type of digital data, QS-generated data is exposed to the risks of theft, loss, or unlawful processing. The options available to the user against the data controller are specified in Art. 15, 34, and 35 FADP. The Swiss Criminal Code allows the prosecution of the perpetrator of an offense related to data and IT tools (for a more detailed discussion of the criminal aspect, see Métille et al., 2014). The second concern relates to the commercialization of digital datasets. The data collected in the framework of QS attracts economic, governmental, and pharmaceutical industry actors. This biovalue does not benefit the users at all, even though their personal data is at the heart of this capitalization (Lupton, 2015).

Using connected wearable devices and wellness applications in the context of QS can threaten users’ physical or psychological integrity. This can occur in particular in the case of manufacturing defects, errors in the programming of data analysis applications, or excessive recommendations for physical activity. In this context, the manufacturer could be held responsible according to the Federal Act on Product Liability.

Finally, daily quantifying of bio-behavioral parameters opens a permanent observation window on the behavior and habits of users. The collected data can be used to profile each individual user. The perspective of this purpose endangers the right to self-determination of people who practice self-measurement and illustrates the risk of moving from empowerment of the individual to digital surveillance.

Development perspectives around the Quantified Self

Currently, there is no specific certification for connected self-measurement devices and wellness applications that would inform users about the reliability of measurements and recommendations of QS tools. A “reliability index” could be created based on the model of the French reparability index. The criteria for scoring and the monitoring authority for such an index would need to be determined.

The QS movement does not stop to the practice of individual self-measurement. Connected tracking technologies are being incorporated into the workplace – this practice is also known as Quantified Employee – where one of the stated goals is to ensure employees’ security and health. Incorporating these technologies also raises fears of abuse, particularly for surveillance purposes. In Switzerland, supplementary health insurance companies have also taken up this phenomenon. They offer insurance policies based on optimizing health through quantified objectives using connected wearable devices.

From a sociological point of view, the QS can lead to important societal changes in our conception of solidarity, but also in the role of the State in the framework of public health prevention. A study by Samochowiec draws up four dystopian scenarios which, although unlikely to come true in their entirety, describe the societal issues surrounding the use of connected self-monitoring technologies. Indeed, depending on the importance given to solidarity between individuals and state governance, the scenarios range from a sanitary state to a voluntarist society in terms of health data sharing.

Conclusion

Connected self-tracking technologies have become essential tools for people who want to quantify their health parameters. The increasing number of connected self-tracking devices and wellness applications on the market reflects this success. The data collected through self-tracking contributes to improving scientific knowledge in the context of diseases. However, QS generates a substantial amount of sensitive personal data, the protection of which lacks certainty. The commercial interests of the actors who have access to the collected data poses a concern. In addition, the tools used are not submitted to any certification concerning the reliability of the measurements or recommendations, which can put users at risk. As it stands, it is complex to advise anyone to embark on the QS adventure without prior information on the risks involved and the fate of their health data.

To go further:

  • Lupton, The Quantified Self : A sociology of Self-Tracking, Cambridge 2016 ;
  • Ballano Barcena / C. Wueest / H. Lau, How Safe is Your Quantified Self ?: security response, 11 August 2014 ;
  • Aebischer, Les applications mobiles de santé – De véritables dispositifs médicaux ?, PJA, 2017, pp. 63-72.

Auteur(s) de cette contribution :

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PhD candidate at the Institute of Health Law of the University of Neuchâtel. Research conducted within the framework of the SNSF Eccellenza project "The increasing weight of regulation: the role(s) of law as a public health tool in the prevention state" (n°181125). Interested in issues related to the application of new technologies in the health area and in the prevention of non-communicable diseases.