One of the great specificity of CARPEM is its expertise in translational research and precision medicine in the field of cancer. In this context, the way that cancer research is carried out has profoundly changed. Nowadays research crucially depends upon infrastructures such as biobanks, data repositories, where health care data and biological samples can be reused for the purpose of different ex-vivo non-interventional phases of translational research. The duration of the storage should ideally be unlimited, and sharing data and samples at a local, national or international level are essential for progress in the area.

In the case of CARPEM project, which relies on a research consortium, translational platforms, and international cooperation, it is difficult if not impossible, to obtain ethically valuable informed consent for all future research at the time of recruitment, and before the beginning of each research project. Re-consenting is both time-consuming and costly, whereas researchers need to be able to react quickly and to have flexibility in their research. Moreover, it exposes to the risk of high dropout rates with regard to the difficulties in locating people after their first inclusion.

• Thus, on one hand, the cancer research community is all at once tempted and encouraged to share and reuse biological samples and health data in order to promote scientific discovery and to enhance research reproducibility.
• On the other hand, health care professionals and researchers encounter social and legal barriers that threaten their research projects.

These facts have opened the way to the so-called “dynamic consent” (DC). DC is a new ethical concept that offers a new approach to consent, designed to meet the needs of current research practices and the preferences of the participants (Kaye 2014 Eur J HumGenet; Budin-Ljosne 2017, BMC Med Ethics). It was initially developed in the field of biobanking and was conceived as a personalized and digital communication interface between researchers, patients, and citizen, placing patients at the center of the decision process. More than that, DC constitutes a new approach to allow a two-way communication to favor the creation of a more engaged patient community, where subjects can easily tailor their own consent preferences. DC offers flexibility and allows participants to modify their consent preferences over time. Thus, the characteristics of DC seem to meet all the criteria for both the needs of researchers and the expectations of patients. The use of digital technological interactive interface can be customized to favor multiple interactions, including the implementation of self-reported data by patients. Moreover, it fits with the requirements of the European General Data Protection Regulation of 2016, and thus favors the international collaborations.

Finally, new technological information tools allow not only data mining and analysis but also the integration of data from multiple sources. Linking information about the same individuals from different data sources (administrative, healthcare pathway, environmental, self-reported, or self-produced by connected objects) can be extremely useful, the knowledge gained being considered as dependent on both the quantity and the quality of the shared data. Thus, data linkage, which can integrate pieces of informations that would otherwise be missing is also subject of informed consent. Linking information about the same individuals from different data sources can assist in establishing new relationships between health and environment, lifestyle and other risk factors (see §IRP1-WP1).

Nevertheless, such linking practices expose individuals to several risks including the vulaneration of privacy. A few studies have collected opinions about data linkage for the purpose of health research. However, to the best of our knowledge, none of these studies involved French participants. A recent systematic review of qualitative studies aiming to explore public responses to data sharing and linkage of health data for research purposes concludes that, even though public support for data sharing and linkage does exist, it remains conditional and a range of concerns exists (Aitken, BMC Med Ethics 2016). The PEARL study (Audrey, BMC Med Res Methodol 2016) reported also that the youth of participants in epidemiological research strongly influences the degree of acceptability of data linkage. Despite of their first engagement in an epidemiological research, many young participants feel strongly concerned by linkage practices, thus categorically refusing linkage of their personal data. Integrated research Program 3 meets the conditions to test the theoretical and real-life acceptance of such practices.