Optimising cohort data in Europe

3. Ethical and legal considerations New data collection technologies can offer great opportunities to collect data in previously unreachable populations or geographical areas, and can thus provide new insights to human behaviour, physical action, social activity and mental state. Advances in mobile and wearable technology allows for greater profiling and for an extension in the collection of personal data. Despite such benefits however, the use of digital communication technologies includes significant ethical, legal and methodolgical challenges. Firtst, modern digital technologies problematise the issue of control because their structures and modes of operation distribute control away from users and dilute personal agency and awareness (Price and Cohen, 2019). Instead, participants simply become a part of the system with which they interact. Autonomy is thus not something that can be taken for granted because it can be easily exchanged for perceived benefits (such as the services of an app) (Cech, 2018). Second, the confusion between privacy and confidentiality leads to blurred boundaries between privacy policies used by researchers and policy arrangements from platforms. In the framework of new data collection technologies, data collection and data use are not neutral and, hence, the decisions researchers make can either support or harm vulnerable communities. Finally, new and emerging digital technologies may have a representativeness problem due to digital illiteracy and self-selection, as well as lack of specificity. We will focus on three domains where digtital data collection technologies present ethical and legal problems namely (i) autonomy (ii) confidentialty and privacy and (iii) consent. 3.1. Autonomy Mobile data collection often occurs in a context of self-managed privacy of participants. However, self-managed privacy stands in contradiction with some principles of autonomy. Namely, while self-managed privacy may be an attractive solution in mobile data collection (e.g. setting data platforms for participants with personalised log-ins), it is not achievable in practical terms. That is, while data platforms are supposed to be public, their use requires a relatively sophisticated understanding about how data is collected and recorded across mobile devices. Such an understanding is generally not forthcoming: for instance, most participants are not aware of the extent of data collection or howmany parties can purchase access to Facebook data (Rose-Redwood, 2006). As Solove (2012) notes this is not only a knowledge issue: by virtue of being both actors and providers of data on mobile devices, participants would never be able to fully manage their privacy themselves regardless of how informed they are.