Genomic Testing, Unexpected Consanguinity, and Adolescent Parents
This case study about an infant with epidermolysis bullosa and his fourteen-year-old mother involves pediatric genomic testing and concerns about the adolescent parent's decision-making capacity. Four commentaries explore ethics issues in the case, including the following challenges: The curren...
| Κύριοι συγγραφείς: | ; ; ; |
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| Τύπος μέσου: | Ηλεκτρονική πηγή Άρθρο |
| Γλώσσα: | Αγγλικά |
| Έλεγχος διαθεσιμότητας: | HBZ Gateway |
| Journals Online & Print: | Φόρτωση...
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| Fernleihe: | Fernleihe für die Fachinformationsdienste |
| Έκδοση: |
Wiley
2021
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| Στο/Στη: |
The Hastings Center report
Έτος: 2021, Τόμος: 51, Τεύχος: 5, Σελίδες: 8-11 |
| Άλλες λέξεις-κλειδιά: | B
pediatric ethics
B Informed Consent B Capacity B genomic testing B adolescent parents B Consanguinity B incidental findings |
| Διαθέσιμο Online: |
Volltext (lizenzpflichtig) Volltext (lizenzpflichtig) |
| Σύνοψη: | This case study about an infant with epidermolysis bullosa and his fourteen-year-old mother involves pediatric genomic testing and concerns about the adolescent parent's decision-making capacity. Four commentaries explore ethics issues in the case, including the following challenges: The current ethics guidelines regarding informed decision-making for genomic testing and return of results have been relatively silent on how to involve parents who are minors in decision-making on behalf of their children. This lack of guidance can be particularly difficult for physicians when genetic test results revealing consanguinity raise concerns about sexual abuse of a minor, provoking questions about mandatory reporting requirements. Finally, medical teams may find themselves having to evaluate an adolescent parent's capacity in making medical decisions for her child while questioning the role and relationship of her support person. |
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| ISSN: | 1552-146X |
| Περιλαμβάνει: | Enthalten in: Hastings Center, The Hastings Center report
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| Persistent identifiers: | DOI: 10.1002/hast.1276 |