Tom Doyle, PhD, post-doctoral fellow at IUCB, and Peter H. Schwartz, MD, PhD, Director of IUCB, received funding – a one-year bioethics supplement from the NIH to the Indiana CTSI – to create messages and a website to help biobank donors (people who contributed a sample) learn more about how their data and samples are being used for research.
The idea for the project stemmed from recommendations made by laypeople participating in a public deliberation funded by the Indiana CTSI and hosted by the IU Center for Bioethics in Spring 2024. The new funding will allow Dr. Schwartz, Dr. Doyle, and their team to work with biobank donors from two biobanks in Indiana to create messaging and a website to increase transparency, and subsequent pilot testing to see how viewing this information affects donor trust and willingness to participate in additional research projects. The findings will potentially change the relationship between donors and biobanks in the future.