AMA J Ethics. 2025 Oct 10;27(10):E718-725. doi: 10.1001/amajethics.2025.718.
ABSTRACT
Patient-subjects’ participation in an Undiagnosed Diseases Network (UDN) protocol can afford access to innovative diagnostic techniques, especially in genomic medicine, which can shorten the time it takes to accurately diagnose a so-called “medical mystery.” But UDN research processes can be complex and involve many variables, which can suggest to some patient-subjects that having enrolled in a UDN protocol was not worthwhile. This commentary on a case rife with diagnostic ambiguity offers a dynamic model of consent that can both facilitate prospective UDN patient-subjects’ assessment of potential risks and benefits of participating in diagnostic research and be a source of community engagement.
PMID:41032341 | DOI:10.1001/amajethics.2025.718
