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基因组研究:对儿童的影响。

Genome research: implications for children.

作者信息

Williams J K, Lessick M

出版信息

Pediatr Nurs. 1996 Jan-Feb;22(1):40-6.

PMID:8700624
Abstract

New discoveries from genetic research may benefit children through increased knowledge of genetic causes of diseases, and new methods of diagnosis and treatment including presymptomatic diagnoses, carrier diagnoses, and gene therapy. However, these discoveries are also creating ethical, legal, and social dilemmas regarding children's health. Inaccurate interpretation of carrier test results, a limited understanding of implications of genetic information, emotional implications of testing, and potential insurance denials are examples. Ways in which pediatric nurses will apply knowledge of genome research in their practice include: education, counseling, advocacy, clarification of values and feelings, and referral for information, support, and assistance.

摘要

基因研究的新发现可能会通过增加对疾病遗传病因的了解以及包括症状前诊断、携带者诊断和基因治疗在内的新诊断和治疗方法,使儿童受益。然而,这些发现也在儿童健康方面引发了伦理、法律和社会困境。例如,对携带者检测结果的不准确解读、对基因信息影响的有限理解、检测的情感影响以及潜在的保险拒保。儿科护士在实践中应用基因组研究知识的方式包括:教育、咨询、宣传、澄清价值观和感受,以及转介以获取信息、支持和帮助。

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