Bove C M, Fry S T, MacDonald D J
Neurology Department, Massachusetts General Hospital (MGH), Boston, USA.
Semin Oncol Nurs. 1997 May;13(2):135-40. doi: 10.1016/s0749-2081(97)80011-3.
To provide an overview of the ethical and social concerns that are raised by the use of new genetic tests in asymptomatic persons.
Review articles, research studies and legislation related to genetic testing.
Predisposition and presymptomatic testing is possible to any age for adult onset disorders if a mutation is known. Testing without early effective interventions is controversial, especially prenatally and in children. Issues of privacy, discrimination, stigmatization and emotional stress are potential problems. Informed consent is essential before deciding to test. Awareness of the implications of testing can enhance the nurse's advocacy role.
More studies are necessary to identify the impact of presymptomatic testing on adults and children. Nursing research to identify the family concerns, and to develop effective educational, counseling, and supportive interventions would make a valuable contribution.
概述在无症状人群中使用新型基因检测所引发的伦理和社会问题。
与基因检测相关的综述文章、研究及法规。
如果已知突变,对于成人发病的疾病,任何年龄都可进行易感性和症状前检测。在没有早期有效干预措施的情况下进行检测存在争议,尤其是产前检测和儿童检测。隐私、歧视、污名化和情绪压力等问题是潜在风险。在决定检测前,知情同意至关重要。了解检测的影响可增强护士的支持作用。
需要更多研究来确定症状前检测对成人和儿童的影响。开展护理研究以确定家庭所关注的问题,并制定有效的教育、咨询和支持性干预措施将做出宝贵贡献。