What Are Ethical Merits and Drawbacks of Viewing “Medical Mysteries” as Human Subject Research
Bibliographic Data
| ID | 15747220 |
|---|---|
| Authors | Tom A Doyle (0000-0002-8565-0648, Center for Practical Bioethics, corresponding author), Erin Conboy (0000-0002-4831-6683, Indiana University – Purdue University Indianapolis) |
| Year | 2025 |
| Volume | 27 |
| Issue | 10 |
| Pages | E718-725 |
| Publication date | 2025-10-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | The AMA Journal of Ethic (JOURNAL) |
| Journal identifiers | ISSN: 2376-6980 • E-ISSN: 2376-6980 |
| Publisher | American Medical Association (PUBLISHER • US) |
| DOI | 10.1001/amajethics.2025.718 |
| PMID | 41032341 |
| OpenAlex | W4414690873 |
| Language | EN |
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 hypothetical 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
Ambiguity · Ethical issues · Informed consent · Key (lock · Protocol (science · Subject (documents · Empathy and Medical Education
| Highly cited | No |
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