Summary of Evidence
This study aimed to explore the major themes, concepts and topics discussed in the literature about ELS issues of digital phenotyping, to uncover the ELS implications of digital phenotyping today and their anticipated future, the various disciplinary approaches and methodologies in assessing the ELS implications of the use and implementation of digital phenotyping, and finally the gaps in the research and literature about the ELS issues of digital phenotyping. A conceptual scheme of identified clusters is represented in Fig. 11.
The detailed examination of the different dimensions that characterize the body of literature on the ELS issues of digital phenotyping suggested several key concerns, particularly concerning the integrity of the digital environment. The degree of trust that users attach to access and platform providers in terms of providing secure service environments, as well as the trust placed in governments and regulatory authorities to safeguard the integrity of the digital environment and to prevent adverse effects on individuals and society, is becoming a major parameter affecting the potential of digital phenotyping in the future of healthcare or for its widespread use.
Beyond Issues of Consent: Disempowerment
The authors who are critical of digital phenotyping technologies challenge the dominant, often implicit, beliefs that underlie the phenomenon of healthism—for instance, the belief that individuals have at least some control over their lives and can take responsibility for their own health. The notion of empowerment, in relation to one's quality of life, which is widely used in the literature, seems to be closely linked to healthism, which in turn is linked to the issue of self-control. However, these links do not take into account the social and economic determinants of health (e.g., 2, 41, 51, 65, 92, 104). Decontextualized knowledge production and sharing via technologies are seen by some as devaluing the knowledge of practitioners, who bring experience and empathy to medical practices (e.g., 2, 71, 106, 122, 149). Several authors have particularly warned about the need to regulate digital phenotyping and wearables as consumer or medical grade devices (e.g., 2, 17, 23, 30, 106), but only one looked into issues of covariance vs causation (120). The reliability of the data is questioned as well, since devices from the private sector are patented and they are under no legal obligation to disclose the technical characteristics of their algorithms nor their handling of anonymized data (e.g., 26, 50, 78, 91, 100, 109). The critical literature as a whole denounces the reductive nature of the measurement and quantitative evaluation of health (e.g., 2, 51, 85, 87, 104), while a still less prominent trend in the literature considers that the instrumentalization of the human body serves the interests of private companies and not individuals or society as a whole (e.g., 2, 11, 27, 51, 85, 92).
The Quantification of Life: Delegating Collective Responsibility to Individuals
Similar questions have been problematized in terms of participatory surveillance (Albrechtslund, 2008; Pagliari & Vijaykumar, 2016), a concept that deals with the quantification of life as a whole (e.g., 65, 72, 75, 86, 91, 98, 123). It is argued that individuals may be taking an active part in diminishing their own power to act through digital technologies, and that connected devices may operate in this way through statutory enticement (e.g., 5, 11, 41, 50, 125, 142). On the other hand, the disconnect between the social and economic dimensions has been problematized through applied research, such as in the treatment of obesity (e.g., 12, 43, 48, 50, 64, 68, 75). Several authors, particularly in philosophy and sociology, point to the reductive biomedical nature of digital health's aspirational approaches. They question the potential benefits of the Quantified Self movement and the technological fix associated with it, especially given that users gradually seem to lose interest in connected devices after only a few months of monitoring (e.g., 3, 9, 26, 85, 97, 105, 114, 133). Consequently, the quantification of the self is generally ad hoc in terms of individual practices and does not extend to medical healthcare practices (e.g., 44, 64, 100, 112). The disincentives, costs, and burdens associated with the introduction of biometric evidence generated by the body and its activity, and concerns about the collection of such data, are significant challenges. However, Sharon (2017) uses an ethnographic approach to show a more nuanced understanding of “data fetishism”, aligned towards “enactments of autonomy, solidarity, and authenticity”. On the other hand, self-monitoring of athletic performance (e.g., 31, 49, 100) would be polarly opposed to this type of practice, given that the competitive incentive to improve is strong and the objectives are more precise among this population. In contrast, individuals in the general population experience a high degree of volatility in their use, given their disengagement from self-knowledge, the body, and health through numbers (e.g., 3, 9, 26, 85, 97, 105, 114, 133). However, only limited research has been conducted on these limitations.
Self-Monitoring in the Neoliberal Context: The System at Large as Issue
Even though ELS issues related to digital phenotyping are seldom put in relation to market forces and market power and their mutual effects, the topic of digital health has become the subject of sociological and philosophical reflections inspired by the work of Foucault on biopower transposed to contemporary post-industrial societies (e.g., 5, 20, 27, 48, 65, 85, 116, 125, 140). It criticizes today's tendency of using wearable devices to impact behavior. Health behaviors, understood as practices of the self, reflect the political influences of biopower in terms of disciplining the individual and controlling populations. In this vein, Lupton (2016) highlights the lack of critical distance in research from how digital technologies are used in health. She argues that the prevailing enthusiasm for digital health care is an impediment to critical questioning of the social, cultural, ethical, political, and economic dimensions at stake with these rapid technological developments. Lupton maintains there are deep implications of the focus on digitalization in healthcare, as it leads to new ways of tracking and monitoring the human body, along with increasingly widespread sharing of related data. A central implication of self-quantification is the significant narrowing of accepted social representations of health, wellbeing, and disease (e.g., 71, 92, 121, 122, 124). Biometrics and related measurements, together with comparisons to virtual norms defined by technology proponents and technology-oriented authors, are gradually reducing the range of experiences and ways of articulating the lived experience of individuals and entire populations. A critical approach to digital health thus requires an analysis of how the boundaries between the domains of health, well-being, and illness are influenced by technology, as well as of issues of intimacy, sharing and privacy, and the relationship to the body. In this perspective, embedding the issue of politics is inseparable from the uses of connected objects and the meaning and subjectivity of the users that incorporate them in their daily lives.
New standards and Reshaped Social Values
In conjunction with the issue of privacy and surveillance, a distinctly critical trend towards digital health has emerged. It highlights the individualistic and normative character of self-monitoring seen as a means to attain a particular objective. It is argued that each individual is deemed to bear sole responsibility for his or her own health, to the detriment of a more community-based and global approach to healthcare, viewed from a broader public perspective. As Ajana (2018) underscored, “Privacy is increasingly framed as a normative individualistic concept that is inherently in opposition to the collective good”. Various authors denounce the managerial dimension that the use of connected objects brings to health, defined as a purely individual resource (e.g., 87, 109, 122, 123, 131). Authors have discussed self-quantification in terms of the emergence of new reference values through competition and comparison, in conjunction with the production of biometric data, whereby the norm is algorithmically defined (e.g., 27, 41, 43, 86, 97). The trend is that the benchmarks that will determine good health via connected devices will be defined by a phenomenon of healthism or dataism—a notion that places the maintenance of good health, performance, and efficiency above other aspects of life and daily activities (e.g., 51, 64, 71, 87, 92, 121, 122). Particularly skeptical authors claim that such healthism will result in a complete disempowerment, as quantifying the self may well entail the establishment of a homogenous lifestyle characterized by the same patterns of consumption, behaviors, and concerns (e.g., 51, 124). In addition, there are concerns about the relationship to the data produced and collected, the meaning attributed to it, and how this data is transformed into action on the self (Lupton, 2016).
Research Gaps and Methodological Issues
Finally, we identified a series of research gaps and methodological issues that must be addressed in future research. First and foremost, this review revealed a problematic use of terminology and a high degree of semantic confusion used in the current scientific literature (Fig. 3). This phenomenon reflects the rapid and constant development of the technology itself, along with how it is marketed, often involving semantic shifts that are difficult to pinpoint. The observed ambiguity of the concept seems to be linked to the ongoing race to produce increasingly effective connected devices, in close connection with the economic interests of public health. Scholars might need to coin new terms which encompass these emerging meanings and possibilities, as well as the critique or connotation they wish to enclose in the terminology. Some will rapidly gain currency (digital phenotyping, for instance). However, this hinders cross-disciplinary exchange, while the general public, i.e. the users as well as the data provider of all research, might feel overwhelmed by the complex terminology that emerges from various fields: digital phenotyping, ubimedicine, or innernet are not self-explanatory. We recommend that scholars who target an audience outside of their disciplinary fields adopt clear standard English descriptors such as "self-tracking" or "personal sensing" (Mohr et al., 2020). Moreover, when referring to a wearable device by its trade name, scholarly production can even act as an advertising platform for the most common brands of wearable devices, the brand name of the undisputed market leader in wearable fitness being the most used term for wearable devices (e.g., 28, 41, 43, 53, 72, 115). Furthermore, technological advances in the field are based on representations of what is considered to be healthy in relation to different daily activities (e.g. eating, sleeping, being active), but whose referents are only rarely made explicit. The study of digital phenotyping and wearable devices has resulted in a great deal of confusion in the scientific literature regarding wellness and health, but also in the labelling of the quantification of human activity. We consider it necessary to deconstruct these presuppositions and to analyse the terminology in order to identify rigorous concepts and to delimit the fields of application of the various devices. One way to improve this understanding would be to create an interdisciplinary glossary to mitigate misunderstandings without requiring scholars from a particular discipline to immerse themselves over lengthy periods of time in the literature of another discipline. We thus note the need for a better definition of the terms in use, with a view to a better understanding of the issues at stake, whether between the various stakeholders in the health sector or within a single discipline. Furthermore, conferences tagged as interdisciplinary often remain multidisciplinary, as interdisciplinarity faces intellectual and organizational difficulties (Glasberg, 1997), and such a glossary would help rethinking the directions in international and interdisciplinary conferences which remain essential to the challenge of improving communication and collaboration among the various disciplines and sectors in the field.
Furthermore, the reviewed body of literature highlighted the importance of questioning the boundaries between the notions of health and disease. A widely shared conception of the human body withstands throughout the literature: it can be measured, adjusted, programmed, or controlled by technologies. In other terms, the majority of authors discussing ELS issues of digital phenotyping position themselves as technophiles or technophobes, ranging from the idealization of connected objects with some concern about privacy to strong skepticism about them. This recurrent opposition conceals a widely shared conception of the human body, a common apprehension of a human subject who could externalize and delegate their lived sensations to machines. The body, health, and illness are apprehended as biological facts, with little or no place for such facts as culture and intersubjectivity. Moreover, this dichotomy of positions frequently opposes disciplines: health sciences and to a large extent psychology, of a more positivist and post-positivist persuasion, develop perspectives that have little to do with sociological work or the critical approaches developed on wearable devices, thus resurrecting classic oppositions between positivist and/or post-positivist paradigms, on the one hand, and constructivist and/or subjectivist paradigms, on the other (e.g., 2, 51, 85, 87, 104, 116, 120).
This scoping review highlights the need for longitudinal and contextualized studies in the field of digital health. Despite an unprecedented increase in the use of apps and wearable devices, this has not been the subject of many critical empirical studies: critical socio-cultural or longitudinal psychological analyses are scarce, although it is imperative to study the possible addictive and other psychosocial effects of digital phenotyping related technology, such as orthorexia and its links to healthism and dataism (e.g., 31, 43, 68, 86, 131, 140). Similarly, few interdisciplinary or longitudinal studies have been conducted on the uses of connected devices by various stakeholders, especially the most vulnerable groups (children, the elderly, minorities, people with disabilities, etc.). For instance, as Dow Schüll (2016) reported on her ethnographic fieldwork conducted at the Consumer Electronics Show and its Digital Health Summit, “most of the discussion at the Digital Health Summit, however, focused on the well, not the sick”. The specific know-how and practices developed by individuals or communities using connected objects have also received little attention in the literature outside of the Quantified Self movement or digitally skilled individuals or communities (Sharon, 2017). However, our review testifies to an effort from the part of some researchers to integrate multidisciplinary perspectives in the development of objects and/or interventions in the field of digital health (e.g., 8, 10, 12, 18, 20, 28). In this respect, introducing digital technologies into health systems requires coordination and communication between health practitioners, patients, caregivers, users, engineers, and developers. The authors therefore often advocate for more research and/or a more holistic approach to digital health technologies, which should look into the short term as well as long term benefits or detrimental effect of digital phenotyping, and can take into account the complexity of health practices, as well as the personal rituals and habits of patients or other stakeholders. Several qualitative empirical papers and ethnographies have contributed in that sense (e.g., 3, 5, 11, 16, 25, 31, 56, 70, 89, 97, 122), but we encourage additional qualitative studies looking into the perceptions of all beneficiaries and stakeholders (policymakers, developers, engineers, users, medical practitioners, etc.).
The lack of scientific studies demonstrating the impact of national digital health programs around the globe remains important. We have not found studies discussing the overall cost (legal, infrastructural, human, and environmental) of infrastructure implementation on a social (national) level. The social-ecological impact was overall overlooked in our body of analyzed literature, and only 2 publications questioned the environmental impact of widespread usage of digital phenotyping-related devices (56 and 118). This scoping review also reveals a strong misbalance of scientific production from the Global North and the Global South, the debate on ELS issues being dominated by the Global North, and resulting in cognitive injustice in knowledge production in the realm of digital phenotyping, thus perpetuating the digital divide between North and South. Moreover, usage of mobile technology might differ by gender (Sobieraj & Krämer, 2020). These differences may be explained in part by women's lower financial accessibility to mobile telephony (especially in the world's least developed countries), social norms, fear of harassment, as well as more limited knowledge of digital tools, and should therefore be further evaluated. Gender-focused research will ensure gender equity is adequately investigated and implemented in policies that will apply to self-generated data. An additional issue to that is that many studies are conducted on a small scale, their duration is limited by funding and, possibly, the pressure to publish. Several authors have warned against this tendency (outside the scope of this scoping review as well, see Choat, 2017). This lack of evidence, combined with the lack of cooperation between the private and public sectors, represents a major obstacle to the integration of digital phenotyping into our existing healthcare systems and its interoperability. Adoptability and adherence being a major social issue in the literature, studies in media discourse that analyze the public's social perceptions of ELS issues should be developed. Funding bodies, both governmental and private, can mitigate many of these issues by strategically funding and collating studies that meet the above criteria, ensuring inclusiveness and meaningful contributions that challenge social health inequality on all levels. This approach could address the issue of algorithmic bias as well. Rethinking models of strategic social entrepreneurship, and partnerships with academia, is another avenue to address these issues and create value through corporate social responsibility. Even though scholars must continue examining ELS issues of digital phenotyping from a variety of angles and theoretical positions akin to a certain disciplinary position, only interdisciplinary and intersectoral work can inform a holistic overview of existing issues and therefore produce and operationalize a suitable solution.
To our knowledge, this work represents the first scoping review examining the ethical, legal, and social issues related to digital phenotyping. We recognize however that our defined scope may have excluded important aspects closely related to digital phenotyping such as ELS issues discussed in articles pertaining to digital data generally speaking—intertwined topics of big data, AI, digital technology, etc. However, this scope is in line with our planned research and therefore sufficient for the current study. We hope to develop this review with a broader scope in due course.
Furthermore, we recognize the limitations which pertain to filtering publications in the English language only: English-speaking countries of affiliation may have been considerably less represented had we been able to expand our search to additional world languages. Whether scientific production contributes to English language hegemony, or whether English has become a lingua franca for scholars to communicate their findings across the globe is debatable; but although we are aware of this issue, time and resource constraints have had us limit our search for the present study. Additionally, the country of affiliation of the first author is not necessarily the first author's country of activity.
Our keywords search string was limited to 11 keywords across all search databases. We included keywords based on our preliminary scoping of the literature. However, many more terms from the lexical field of digital phenotyping could have been included, such as lifelogging, which was “supplanted” by the term Quantified self, as claimed by Deborah Lupton (2017, p.1). Furthermore, in an effort to collect a cross-disciplinary body of literature, we decided to include in our search string the keyword crowdsensing (Mehdi, 2019; Pryss, 2019), frequently used in Computer and Information sciences—although this keyword resulted in a fairly large volume of publications, they have not been selected passed our title and abstract screening, as these publications did not address ethical, legal nor social issues in the field of digital phenotyping.
Finally, we excluded a fairly large number of publications based on them addressing solely technical issues—a certain number of those papers did look into digital phenotyping in the context of more vulnerable groups such as the elderly, children with autism syndrome, and others. This confirms the above-stated point that most scholarly studies addressing ELS issues of digital phenotyping look into the use of this technology by healthy groups.
The objective of this scoping review was to collate the ethical, social, and legal concerns and arguments surrounding digital phenotyping in scholarly publications, to identify the potential impacts and consequences of this particular technology, to locate the gaps in the literature, and to orient academic efforts to address the concerns of digital phenotyping as a future solution for present-day challenges. Alongside the manifest issues of security, privacy, or consent, this scoping review presents distinctive ELS issues related to several stakeholders involved with these technologies (i.e., caregivers, physicians, researchers, designers, engineers, researchers, etc.). Some of these ethical issues are relatively under-represented in published scholarly debates. This implies that there are important concerns that have not been fully or sufficiently considered from a holistic perspective. Firstly, given the impact of such research on the lives of individuals and patients, it seems essential to conduct empirical studies through field research on the dynamics of digital phenotyping technology seen as a social artifact; on the psychosociological influences of these technologies on the individual, interpersonal, societal, and global level; and on the definition of the boundaries between well-being and health and illness. In the same vein, the physical and psychological repercussions of wearable devices need to be examined from the point of view of various profiles of users, based on their experience within their specific social and cultural contexts.
Although the most common theoretical approach used in our body of literature were various theories of technology acceptance, another promising avenue in this direction could be explored through supradisciplinary Social representation theory (Moscovici, 2001) and Actor-Network Theory (Law, 2009). Indeed, the existing debates mainly focused on the promises associated with new health technologies, require particular attention to "making the unfamiliar familiar" (Christidou et al., 2004) and to these objects as mediators of meanings from the individual, interpersonal, societal, and legal perspective. Introducing new technological tools into the field of health is bound to be confronted with the modes of reasoning and viewpoints of the various groups and profiles of users for whom it is intended. Considering the many studies that testify to users' lack of concern for issues of privacy (e.g., 17, 42, 49, 51, 96), it seems legitimate to assume that the vast majority of people, ranging from the enthusiasts of the Quantified Self movement to the technically unskilled person, do not have the expert technical understanding to foresee neither all the possible benefits nor the issues which might arise from implementing these technologies on a wider societal scale—physical health issues (eyesight, posture, insomnia), psychosocial issues (addictions, orthorexia, harmed relationships, breaches of privacy), cost of infrastructural implementation, etc. Neither does a legal practitioner, for instance, who will rarely have the necessary level of expert knowledge to foresee all the ramifications of incorporating the rapidly expanding field of digital phenotyping into our soon-to-be globalized healthcare systems. Because of this velocity, the regulatory sector seems to be the least productive both in its critique and its reactivity, largely overwhelmed by the inappropriateness of existing laws to address the emerging legal issues linked to digital phenotyping and its constellation of devices. Moreover, the legal sciences were amongst the most scarcely represented disciplines in our corpus while the lack of regulation was cited as the most prominent issue in that sphere. In this respect, interdisciplinary collaboration from all key fields, qualitative methods, and longitudinal studies that allow for the follow-up of users in the context of their daily lives offer significant potential for gaining an all-around better understanding.
On the other hand, as many benefits it could potentially bring, the history of technology shows that a theoretically usable technological innovation may not necessarily result in its actual wider acceptance. The role of scholars is therefore key to establishing what good practices of digital phenotyping are, as a best practice guidance specific to digital phenotyping is currently lacking. Funding bodies can encourage international partnerships at the service or knowledge production, not national interest. The Covid-19 pandemic revealed not only how crucial international cooperation is in the field of healthcare, but also huge socioeconomic and racial inequalities that underpin the quality of received healthcare.
To conclude, an international, intersectoral and interdisciplinary collaboration integrating participatory designs and anticipatory ethics is key to respond to the pressing need for updated regulation of digital technologies in healthcare. However, the field still has to find its own forum for a more fruitful scientific collaboration. So far published literature, even if notably interdisciplinary, uses specialized terminology that hinders interdisciplinary exchanges. The field could benefit from specialized conferences or workshops, special issues in scientific journals, post-disciplinary confrontation of arguments, and customarily publishing scoping and systematic reviews. To achieve true digital emancipation for all social actors while preserving the delicate ecological balance of our environment from the mass production of such technology, we must coalesce all of our assets. Until then, wear with care!