The ethics of genomic data sharing and secondary sourcing
Genomic data sharing is integral in providing resources for scientific discovery. By addressing privacy concerns, concepts of genetic exceptionalism in data sourcing regulations, and necessary components of informed consent forms, this project will help guide policies for investigators and better equip institutions to ethically collect and share biospecimens. In the future, biospecimen donations will continue to be a vital component in the process of connecting diseases to genetic markers and informing the necessary therapies to target these diseases. To mitigate the risk of consent violation and privacy breach, comprehensive consent forms should be readily accessible and safely stored with each specimen. While the National Institutes of Health provide some framework for consent protocols, the lack of universal language requirements presents obstacles in data sourcing, as it can be impossible for researchers to confirm that their studies align with donor consent. This project examined the policies of the NIH and the implementations of these policies at the top 20 research universities for genomic research, along with studies of participant perspectives and donor consent knowledge, to devise an ethical approach to genomic data sharing and secondary sourcing.
