Some degree of lack of knowledge regarding study participants’ perspectives and opinions on biobanks is well known among stakeholders such as scientists, researchers and biobanks’ sponsors (11).
It is our opinion that, especially for conditions of high relevance in public health such as psychiatric illnesses, the gap of knowledge has to be promptly filled in order to favour biobanking activities, and most of all, individuals’ aware participation to these activities.
So far, many authors drew great attention on the effect of “non-welfare” interests on willingness to donate to a biobank (12, 13, 14). It is widely recognized, in fact, that the willingness diminishes when the research scenario raises moral, religious or political concerns. Nevertheless, it is worth considering that other emerging concerns, more deeply linked to an individual psychosocial sphere, may also affect the compliance.
In our study, we found that an extremely high percentage of subjects expressed concern about the potential disclosure of individual results, no matter whether these results were study results or incidental findings; they indirectly stated that such a disclosure would negatively affect their willingness to donate for research purposes. This finding is quite odd in the landscape of studies on the same topic. In fact, regardless of the settings and type of participants surveyed [e.g., general population (15, 16), general population vs. research participants (17), patients (18, 19), biobank effective participants vs. potential participants (20, 21)], a great majority of studies found that the disclosure of individual results is well accepted and can be even positively influential in the decision to donate. However, a few studies have already highlighted certain specific signals of the difficulties in disclosing individual health information. In this trend, for instance, Janssen and colleagues reported that patients are interested in receiving information when the disclosure regards very low risk events (22). In the same line, Meulenkamp and colleagues (23) found that, even if only low percentages of individuals (both patients and healthy subjects) do not want to receive aggregate or individual results, the type of results in terms of severity of the conditions in question really matters for decision. Moreover, they also found that anxiousness, as perceived by respondents, is associated with lower preference for results information. The same effects of anxiousness are detectable in other studies (24). Among the SET-DEP respondents who participated in our survey, we found a prevailing preference opposing the disclosure of individual results, not only among those who screened positive for depression but also – and even more – among those who screened negative. This result suggests that there may be relevant personal factors influencing people’s preferences with respect to the feedback of individual results when psychiatric disorders such as depression are at stake. Additionally, these preferences do not seem to depend on the health status or subjective wellbeing as perceived by respondents. We might formulate a first straightforward hypothesis that interest in knowing the results of biosample testing for this kind of disorders could be markedly affected by fears of negative consequences such as labelling, social stigma or discrimination (25) or risk to become more prone to depression and to compromise the successful management of symptoms. Considering that respondents voluntarily participated in the screening for MDD, a certain degree of concern for depression and mental disorders can be envisaged in all the respondents, irrespective of the results of the screening itself. It is of note that the results of the screening had already been communicated to the participants at the time the present survey started. Taking into account this last element, the hypothesis may be enriched by a further consideration about the strength of a generalized concern not only for ascertained mental illnesses but also for a threat of mental illnesses.
Further factors, such as family history or social and cultural features of the individuals might also contribute to explain these results. Obviously, a pure selection bias may have occurred; our study sample represents “healthy” subjects coming from the general population who voluntarily joined a screening programme, whose decision may have been highly influenced by fear of being at high risk for anxiety or depression on the basis, for example, of a specific personal or family history of the disease. Although this is possible, we observed, at the same time, that the preference opposing the disclosure of individual results is not driven by the perceived health status of respondents or by the level of subjective wellbeing that can be considered as a proximal measure of anxiety and depression. This last element deserves further and deeper investigations. Furthermore, our sample shows a high education level that in itself has often been associated with a major selectiveness regarding the type of “information” individuals wish to receive when participating in research (26).