What Are Ethical Merits and Drawbacks of Viewing "Medical Mysteries" as Human Subject Research?
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...
| Publicado en: | AMA Journal of Ethics Vol. 27; no. 10; pp. 718 - 726 |
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| Autores principales: | , |
| Formato: | case study CEU Journal Article |
| Publicado: |
American Medical Association
Oct2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| Sumario: | 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. |
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