Return of Results in Population Studies: How Do Participants Perceive Them?

Abstract

As a cornerstone of public health, epidemiology has lately undergone substantial changes enabled by, among other factors, the use of biobank infrastructures. In biobank-related research, the return of results to participants constitutes an important and complex ethical question. In this study, we qualitatively investigated how individuals perceive the results returned following their participation in cohort studies with biobanks. In our semi-structured interviews with 31 participants of two such German studies, we observed that some participants overestimate the nature of the personal information they will receive from the study. Although this misestimation does not seem to jeopardize the validity of the consent provided at recruitment, it may still represent a threat for participants’ trust in research and thus their long-term commitment, crucial for such studies. We argue that such misestimation may have ethical consequences on the principles guiding the reflection on the return of results in biobank research, i.e. autonomy, beneficence, non-maleficence and reciprocity. We suggest that shifting from the idea of directly benefiting participants through the return of research results could help focusing on benefiting society as a whole, thereby increasing research trustworthiness of population-based studies using biobanks.

Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries

“…Similarly, recent work around public perceptions of the RoR in population research in Germany suggests that although participants may value the RoR, they do not necessarily require it. 29 The second relates to the need to reflect and better understand the diversity of global perspectives because they relate to genomics and the balance between the ethical norms that guide discussion of RoR. Specifically, we highlight the need to distinguish between arguments that are based on autonomy and an individual's right to know information about them and those based on reciprocity.…”