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 |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=188385310&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 188385310 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 23766980 IT3R jtl: AMA Journal of Ethics issn: 23766980 maglogo: N pubinfo: dt: Oct2025 vid: 27 iid: 10 pid: 10281 pub: American Medical Association place: Chicago, Illinois artinfo: ui: 188385310 188385310 188385310 10.1001/amajethics.2025.718 188385310 ppf: 718 ppct: 8 formats: tig: atl: What Are Ethical Merits and Drawbacks of Viewing "Medical Mysteries" as Human Subject Research? aug: au: Doyle, Tom A. Conboy, Erin affil: Postdoctoral fellow at the Indiana University Center for Bioethics in Indianapolis sug: subj: Undiagnosed Diseases Diagnosis Research Subjects Research Ethics Undiagnosed Diseases Familial and Genetic Genetic Screening Education, Continuing (Credit) Male Adult Motor Skills Disorders Consumer Participation Genomic Medicine Adult: 19-44 years Male ab: 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. pubtype: Academic Journal doctype: case study CEU Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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