Adaptation and psychometric evaluation of the BANKS-SP biobanking survey in longstanding dengue virus cohorts in Colombia and Nicaragua
This study adapts and evaluates the psychometric properties of the BANKS-SP biobanking survey in Colombian and Nicaraguan dengue cohorts, finding that while the Self-efficacy Scale performed adequately, the Attitudes Scale requires revision and both sites exhibited significant gaps in knowledge regarding biospecimen governance and legal frameworks.
Original paper licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). This is an AI-generated explanation of a preprint that has not been peer-reviewed. It is not medical advice. Do not make health decisions based on this content. Read full disclaimer
In the world of infectious disease research, scientists rely on vast collections of biological samples—blood, urine, and tissue—stored in specialized facilities known as biobanks. These collections are not merely frozen vials; they are the foundation for developing new diagnostic tests, tracking how viruses evolve, and creating treatments for diseases that strike hardest in tropical regions. However, the success of a biobank depends entirely on the people who provide the samples. If communities do not trust the process, do not understand what happens to their blood, or feel unable to participate, the scientific enterprise stalls. Researchers have long known that a person's willingness to donate is shaped by what they know about biobanks, how they feel about the idea, and their confidence in their own ability to say yes. Until recently, there was no reliable way to measure these feelings and thoughts among Spanish-speaking communities in low-income countries, leaving a gap in our understanding of how to build trust and ensure fair participation.
To fill this gap, a team of researchers traveled to Colombia and Nicaragua to test a survey tool designed to measure these exact concepts. The tool, called the Biobanking Attitudes and Knowledge Survey in Spanish, or BANKS-SP, had previously been used with cancer patients in the United States. The researchers wanted to see if it would work for parents and guardians involved in long-term dengue fever studies in Latin America. Dengue is a mosquito-borne virus that causes severe illness, and the studies in these two countries have been running for decades, collecting regular samples from participants. The team interviewed 124 adults—parents or legal guardians of study participants—in Bucaramanga, Colombia, and Managua, Nicaragua. Before handing out the survey, they held private conversations with community members to ensure the questions made sense in their local context, making small adjustments to the wording to clarify terms like "biological samples" and "medical history."
The results of this evaluation revealed a mixed but instructive picture. The survey's section on self-efficacy, which measures a person's confidence in their ability to donate a sample even when facing obstacles like fear of needles or family objections, performed very well. In both countries, the questions hung together logically, suggesting that people who felt confident about one challenge tended to feel confident about others. However, the section measuring general attitudes toward donation showed a split. In Nicaragua, the questions worked well as a single measure of attitude, but in Colombia, the answers were more scattered, suggesting that the questions did not capture a single, unified feeling for that specific group. This indicates that while the tool is useful, it needs careful tuning before it can be used to compare different countries directly.
Perhaps the most revealing findings came from the knowledge portion of the survey. The researchers asked participants factual questions about how biobanks operate, such as whether insurance companies can access donated samples or if researchers must always contact a donor if a sample reveals a health risk. The overall level of correct answers was low, with participants in Nicaragua scoring slightly higher than those in Colombia, despite the Colombian group having more formal education on average. The most common misunderstanding involved the expectation that researchers would always notify participants if their samples showed a disease risk. In reality, standard consent forms often state that incidental findings will not be shared, yet the vast majority of people believed they would be told. This gap between expectation and reality suggests that the current way researchers explain the rules of donation is not working.
Another significant area of confusion concerned the legal ownership of samples. Many participants were unsure if they retained ownership of their blood after donating it, or if police could legally access the biobank for investigations. These uncertainties were not just random guesses; they reflected a genuine lack of clear legal frameworks in the region at the time of the study. In fact, the confusion mirrored the uncertainty felt by the experts who review research ethics, who also struggled with the absence of specific laws governing these issues. The study found that in Nicaragua, where community engagement has been more intense and long-standing, participants knew more about these rules and held more positive attitudes, suggesting that sustained, two-way communication between scientists and communities builds trust and understanding more effectively than formal education alone.
The researchers also discovered that the survey contained some questions that were redundant, asking the same thing in slightly different ways, which added unnecessary length without adding value. They identified specific items that could be removed or reworded to make the tool sharper and easier to use in the future. For instance, questions about the security of personal information were so similar that they formed a separate, tiny group within the survey, indicating that one of them could be dropped. Similarly, questions about physical discomfort during donation formed their own distinct category, separate from the general motivation to help science.
Ultimately, the study concludes that the survey is a promising foundation for understanding community perspectives on biobanking in Latin America, but it is not yet ready for widespread use without revision. The self-efficacy scale is robust and ready to go, but the attitudes scale needs to be rewritten to better fit the cultural realities of different countries. More importantly, the study highlights a critical need to change how informed consent is delivered. It is not enough to simply hand a participant a form to sign; researchers must verify that people truly understand what they are agreeing to, particularly regarding what happens if a health risk is found and who has the right to see their data. As science moves toward using massive datasets for artificial intelligence and personalized medicine, getting these conversations right is no longer just an ethical nicety; it is a practical necessity for the future of global health research.
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