First opinion issued by the Research Volunteers Committee: presenting general research results to participants

The Institut Pasteur's Research Volunteers Committee (COVOL) has issued its first opinion on the presentation of general research results to participants.

COVOL, established in December 2021, reflects the determination of the senior management team to strengthen the Institut Pasteur's links with civil society. The committee is composed of ten members who participate in the Institut Pasteur's research. These volunteers, recruited largely from the cohorts managed by ICAReB-Clin, provide the Institut Pasteur's teams with access to samples and health data that are crucial for their research on human health. The volunteers' participation is vital, and their experience as research subjects is essential for improving clinical research practices within the institution – this is the committee's goal.

The COVOL members see participating in the Institut Pasteur's research as a "(...) civic gesture, at a time when science is coming under threat because of the rise in misinformation. It is a way for us to contribute to progress in science and medicine; a way to say thank you, since we have all benefited from medical treatment at times (...)." In this context, the COVOL members place great importance on being informed of the general results of the research in which they have taken part.

But on this point, the Institut Pasteur needs to step up its efforts, as participants in the Institut Pasteur's research are not always informed of the general results of that research. This feedback is particularly important for the COVOL members, who see it as a sign of respect and recognition of their commitment to the institution.

The COVOL members therefore wanted to raise this subject by drafting their first opinion.

The COVOL members believe that the presentation of research results:
•    is a powerful motivational driver, encouraging closer involvement and participation in future research,
•    should be the result of a collective process of reflection among research teams, with all interested staff being given the opportunity to take part on a voluntary basis,
•    could lead to a sharing of best practices within the scientific community to democratize the process, especially by mentioning it as part of the "materials and methods" section in publications,
•    should apply to any type of general results, whether they confirm or refute the initial hypothesis,
•    should be personalized and be written and sent by the institution in accessible language and within a suitable time frame.

The COVOL members remain on hand to support the Institut Pasteur in this ethical practice that is important to participants.
 

To find out more, here is a link to the opinion in full (in French)

The committee is coordinated by Fanny Momboisse (Ethics Unit) and Rémy Artus (ICAReB-Biobank) as an alternate member, assisted by Lydie Texier (Medical Department)

Contact: covol@pasteur.fr