Indiana Clinical and Translational Sciences Institute

About This Grant

Since biobanks collect biosamples and health information from thousands of people, to be stored and used for many years, this cornerstone of translational research is particularly dependent on public trust and acceptance. Biobanks rarely communicate with donors after enrollment, however, and studies show that they often fail to recall important facts about biobanking that are disclosed during informed consent. Coupled with increased distrust of science in the United States, limited donor understanding creates dangers for biobank acceptability and trustworthiness and limits donor engagement. In a public deliberation carried out in Spring 2024 by the Indiana CTSI – partnering with a range of biobanks, researchers, and experts – a diverse group of 24 laypeople from across Indiana learned about these issues and made 15 recommendations. Among these recommendations, deliberants emphasized that biobanks should communicate with donors regularly about how the biobank collects and shares information, enters into partnerships with for-profit companies, and may return individual results. Developing and testing ways for biobanks to provide increased transparency is an essential step to help biobanks implement this recommendation and improve their trustworthiness and donor engagement. The long-term goal is to increase the trustworthiness and effectiveness of biobanks. The main objectives of this project are to use an iterative, user-centered design process to develop messaging and a linked website for two partner biobanks, and then measure the impact on donor knowledge, trust, and engagement. The rationale is that the messaging and websites will increase biobank trustworthiness and will be used in phase two of the Indiana CTSI’s Clinical and Translational Research Program, where public deliberation recommendations will be implemented widely to test impact on enrollment, trust, and other outcomes. These objectives will be achieved by pursuing two specific aims: 1) Create messaging and a website for two biobanks – using an iterative, user-centered design process – that discloses to donors how data is collected and shared, partnerships with for-profit entities, and potential return of individual results to donors. 2) Measure the impact of this messaging and website for donors to each biobank on knowledge of, trust in, and engagement with the biobank. The proposed project is innovative because it will test the impact of implementing a recommendation of a public deliberation, will expand the tools of Clinical and Translational Science, and will create and test a novel method of biobank transparency. The project will significantly advance the ability of biobanks to improve transparency and trustworthiness and increase donor trust and engagement. The project will advance the aims of the Indiana CTSI, while going beyond activities proposed by the parent grant. The project fits the goals of the Notice of Special Interest (NOT-OD-25-015) by supporting research on bioethical issues that can inform future policy direction and bioethics research capacity and supports NCATS’ goal of addressing ethical issues that span disease domains and impede translational research.