The research that can be done with biobank data might sound scary, but it shouldn’t be. Genetic data is de-identified. It means that it cannot be linked back to individual research participants, who remain anonymous.
Since genetic data is de-identified, it is often considered exempt from full IRB review, which is a US protocol to ensure studies meet ethical standards and institutional policies. And the broad number of research questions that can be explored with biobanks, along with the amount and types of data collected, has made these original protections to ensure truly informed consent insufficient.
Read this article where Purdue University’s Dr. Robbee Wedow discusses the challenges of ensuring informed consent among research participants when it’s becoming standard practice to collect data in genetic depositories to be available for future research.
