Optimising cohort data in Europe

respect, digital health surveillance systems play a positive role in identifying populations that are not in contact with traditional medical systems (Aiello et al., 2020). Generally, such types of research do not aim toward high generalizability but instead, increase the visibility of vulnerable communities by identifying their specific needs and potential for action (Dove and Garattini, 2018). Interpreted in practical terms (i.e. improving the health of target populations), the principle of beneficence does not necessarily apply in contexts where high generalisability and representativeness are required (Prosperi et al., 2018). In the field of genetic testing panels, the possibility to test for multiple conditions, the potential for re-contacting and re-interrogation, complexity in the test interpretations, variant of unknown significance (VUS), lack of diagnostic certainty and implication of family members (Manrique de Lara and Peláez-Ballestas, 2020), raises important challenges for consent, because it is difficult to determine the extent of information that a participant needs to make a well-informed decision (Dupras et al., 2019). In this context, dynamic consent is the preferred solution for genomic research in general and cohort studies, which gives participants ownership and control over their data (Bilkey et al., 2019). However, dynamic consent in a genetic testing context is not only about continuously reviewing and updating the purpose and scope of consent with the participants. Rather, its main aim is to correspond to participants’ needs by giving them ownership and control over the data (Manzoni et al., 2018; Bilkey et al., 2019). This means that informed consent and the application of research procedures are not applied in terms of their clinical utility but in terms of what participants perceive as a personal benefit (Borry et al., 2018). Participants are thus seen as consumers while the research process (and the associated results) is interpreted in terms of services (Hewitt, 2018). Such an approach is not limited to personal genomic research but increasingly spreads to medical cohort research in general through Electronic Health Records (EHR) use (Bilkey et al., 2019; Juengst and Meslin, 2019). While this service-oriented conceptualisation of data collection corresponds to the expectations for personalised and patient-oriented medicine (Fröhlich et al., 2018), it considerably reduces the scope of beneficence and durably modifies the patient-doctor relationship (Molnár-Gábor and Korbel, 2020). From an ethical pledge for respecting patients’ interests, beneficence has shifted to a commodity in between consumers and healthcare providers in public health systems (Dupras et al., 2019). There are many strategies to ensure that participants fully understand the content of consent. Decision aids, workshops, training in digital platform use and continuous education about the topic of research are some of the more common solutions. On a more specific level, research projects rely on practitioners specially dedicated to the presentation and communication of consent documents (Bialke et al., 2018). While this