Genetic and biomedical research relies heavily on voluntary participation, but increasing data security and privacy concerns may reduce willingness to contribute. This study aimed to identify factors influencing participation in the Lifelines biobank, a Dutch population-based biobank. Previous research indicated that demographic factors such as education level, marital status, and self-reported health are associated with participation, although findings are inconsistent. Psychological characteristics, including societal trust (generalized trust in government and citizens) and prosocial intrapersonal characteristics (attitudes, values, and behaviors reflecting cooperation), have also been identified as important predictors of participation. Concerns about data security, potential genetic discrimination, and commercial exploitation of data have been linked to non-participation. This study sought to investigate the independent roles of demographic and prosocial intrapersonal characteristics in predicting participation and refusal, aiming to provide insights into effective recruitment strategies.

Existing literature reveals inconsistent findings regarding the influence of demographic factors on biobank participation. While higher education, having a partner, and better self-reported health have been associated with increased participation, other factors such as age and gender show inconsistent effects. Psychological factors show a more consistent pattern. Higher societal trust, greater social engagement, organ or blood donor status, and trust in biobanks and biomedical research are strongly associated with participation willingness. Prosocial characteristics, reflecting cooperative tendencies and confidence in cooperation, are also crucial. Societal trust and domain-specific values, such as environmental concerns, are robust predictors across various contexts. Non-participation, particularly refusal, seems better explained by psychological factors. Concerns about genetic predispositions leading to social stigma, potential discrimination, and commercial exploitation of data are common reasons for refusal. The literature suggests that competing values and trust play a crucial role in participation decisions, with a lack of trust increasing anxiety about potential harm.

An online survey was conducted on a sample of the general population in the Northern Netherlands (n = 3019), comprising 2615 Lifelines biobank participants and 404 refusers. The participant sample was recruited via Lifelines (response rate 22.2%), while refusers were recruited from a representative respondents’ panel (response rate 41.4% with financial incentive). Both samples were stratified for sex and age. The survey measured demographic characteristics (age, gender, marital status, education, religion, residence, employment status, and self-reported health). Prosocial intrapersonal characteristics were assessed using measures of prosocial behavior (organ and blood donor status, charitable donations), social value orientation (SVO), and values (hedonic, biospheric, and healthspheric). Societal trust and trust in various research organizations (government, universities, commercial enterprises) and researchers were also assessed. Descriptive statistics and multivariate binary logistic regression analyses were conducted to identify predictors of participation, controlling for demographic variables.

Participants were more likely than refusers to have registered partners, report better self-reported health, and contribute to charities. Refusers had higher education levels and were more likely to be urban dwellers. Participants showed stronger prosocial tendencies, being more frequent blood and organ donors, scoring higher on SVO, and indicating greater concern for health-related values. Participants also demonstrated higher levels of societal trust and trust in government data management. However, they displayed less trust in commercial researchers' data handling compared to refusers. Multivariate logistic regression revealed that health-related values and trust in government data management were strong predictors of participation. Having a partner and lower education levels also positively predicted participation. The association between prosociality (SVO and charitable donations) and participation was not robust after controlling for other factors.

This study confirms the importance of prosocial values and societal trust in biobank participation, but underscores the context-specific nature of these factors. Health-related values emerged as particularly influential, suggesting a prioritization of health concerns among participants. The contrasting patterns of trust in government versus commercial researchers highlight the crucial role of perceived data security and transparency. While prosocial motivations have been suggested in previous studies, this study shows that general prosociality doesn't fully explain biobank participation. The findings suggest that recruitment strategies should focus on building trust, particularly concerning the use of data by commercial entities. Clear communication emphasizing the potential health benefits and safeguards for data privacy are essential.

This study demonstrates that prosocial intrapersonal characteristics, particularly health-related values and trust in government data handling, are stronger predictors of biobank participation than demographic factors. Addressing trust concerns, especially regarding collaborations with commercial entities, and highlighting the potential health benefits are crucial for improving recruitment strategies. Future research should further investigate the interplay between prosocial characteristics, contextual factors, and participation decisions.

The cross-sectional design limits causal inferences. The online survey may have introduced sampling bias, as internet access and digital literacy influence participation. The focus on the Netherlands may limit the generalizability of findings to other cultural contexts. The relatively low response rate for the additional study using Lifelines data could be a limitation, which is addressed by the increase of 41.4% response rate through providing financial incentive for the refusers sample.