Why do participants enroll in population biobank studies? A systematic literature review

Abstract

Therapeutic misconception has been extensively studied and addressed within clinical trials. An equivalent in the genetic research context has been identified as diagnostic misconception. There is not much data on this phenomenon in population-based biobank studies. Since misconceptions may generate undue motives to enroll, the authors aimed at reviewing studies addressing the reasons to participate in biobank studies. The main databases were searched using relevant keywords. Studies were included if peer-reviewed, in English and describing the reasons to enroll was provided by actual and apparently healthy donors. Although the 13 studies retrieved were heterogeneous, a scheme summarizing the main aspects involved in the decision-making process was developed. Expectation of personal benefit through health-related information was found in eight studies. Three of them discussed whether this expectation could be considered a form of therapeutic misconception. The magnitude of this phenomenon is an important ethical concern and ought to be further studied.

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

“…The majority of people in this study were enthusiastic about participating in genomics research, and the reasons people gave for being willing to participate in genomics research fell into four main overarching themes: to help others outside the family (altruism); to help family members; for personal health benefit; and for personal curiosity and improved understanding. The altruistic motivation has been previously reported (e.g., Lemke et al 2010), as has the expectation of personal benefit (Nobile et al 2013). To some extent, our findings provide some evidence of the "therapeutic misconception" (Nobile et al 2013) in that some of the reasons people provided for participating in genomics reason suggested that they assumed that they would receive specific personal results through their participation, e.g., "To see if I'm at high risk for any of those diseases".…”

“…The altruistic motivation has been previously reported (e.g., Lemke et al 2010), as has the expectation of personal benefit (Nobile et al 2013). To some extent, our findings provide some evidence of the "therapeutic misconception" (Nobile et al 2013) in that some of the reasons people provided for participating in genomics reason suggested that they assumed that they would receive specific personal results through their participation, e.g., "To see if I'm at high risk for any of those diseases". However, our findings also suggest that people anticipated that they could personally benefit in a different way: by gaining knowledge more generally.…”

“…In other research on obesity, lack of time emerged as a main reason for nonparticipation, including lack of time to dedicate to a topic seen as low priority (Levickis et al 2013). In a recent review of the reasons participants give for taking part in biobanks, 8 out of the 13 studies showed evidence of participants having an expectation of personal benefit through receiving healthrelated information, and three of these discussed whether this could be considered a form of "therapeutic misconception" (Nobile et al 2013).…”

“…There is some evidence to suggest that people may be more likely to participate in research that they perceive to be personally relevant to them: this is suggested from empirical research such as the study in which a significant reason for lack of participation was lack of time for a topic viewed as a low personal priority (Levickis et al 2013), and from the evidence suggesting that people are more likely to participate in biobanks when they believe they will receive personal benefit through health-related information (Nobile et al 2013). It would therefore be interesting to know whether and how individual factors regarding specific complex diseases, such as having a personal or family history of the condition, worry about the condition, and belief about the causes of the condition, are related to willingness to participate in genomics research in these underrepresented minorities, given the suggestion that the more personally relevant the research appears to be, the more likely people may be to participate.…”

Genomic and environmental risk factors for cardiometabolic diseases in Africa: methods used for Phase 1 of the AWI-Gen population cross-sectional study

“…This meant that field staff had to develop verbal constructs to explain, for example, what genes are and how they are inherited, and to be able to distinguish between diseases that are monogenic or are polygenic and multifactorial in nature. An important concern was that the study might introduce therapeutic and diagnostic expectations [75,76]. Participants were informed that if there were clear clinical indications of disease, then they would be referred to a local medical practitioner or health facility for treatment according to local standards of care.…”