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Genomic Testing, Unexpected Consanguinity, and Adolescent Parents
Hastings Center Report ( IF 2.3 ) Pub Date : 2021-08-05 , DOI: 10.1002/hast.1276
Michelle McGowan , Teneille Brown , Aimee B. Biller , Jennifer deSante‐Bertkau

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.

中文翻译:

基因组测试、意外血缘和青少年父母

本案例研究是关于大疱性表皮松解症婴儿及其 14 岁母亲的案例研究,涉及儿科基因组测试和对青少年父母决策能力的担忧。四篇评论探讨了该案例中的伦理问题,包括以下挑战: 目前关于基因组检测和结果返回的知情决策的伦理指南相对沉默了如何让未成年父母代表他们参与决策。孩子们。当基因检测结果显示血缘关系引起对未成年人性虐待的担忧,引发对强制性报告要求的质疑时,这种缺乏指导对医生来说尤其困难。最后,医疗团队可能会发现自己必须评估青少年父母”.
更新日期:2021-09-17
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