Ethical Considerations in Neurogenetic Testing

Author:

Su Xiaowei1,Simmons Zachary2

Affiliation:

1. Department of Neurology, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania

2. Departments of Neurology and Humanities, Pennsylvania State University College of Medicine, Hershey, Pennsylvania

Abstract

AbstractRecent advances in the genetics of neurologic diseases coupled with improvements in sensitivity and specificity are making genetic testing an increasingly important part of diagnosis and management for neurologists. However, the complex nature of genetic testing, the nuances of multiple result types, and the short- and long-term consequences of genetic diagnoses raise important ethical issues for the clinician. Neurologists must balance the ethical principles of beneficence and nonmaleficence, on the one hand, with patient autonomy on the other hand, when ordering such tests by facilitating shared decision making, carrying out their fiduciary responsibilities to patients, and ensuring that patients have adequate counseling to make informed decisions. This review summarizes ethical issues related to genetic testing for neurologic diseases, with a focus on clinical practice. Informed consent for genetic testing of patients and asymptomatic at-risk family members is discussed. The roles and responsibilities of physicians as genetic counselors are reviewed, including the framing of incidental findings and variants of unknown significance that impact individuals' decisions about whether to pursue genetic testing and what results they wish to know. Disclosure and its consequences for the patient are placed within an ethical framework to permit a better understanding of why genetic testing is different from most other diagnostic testing ordered by physicians. The review ends with clinical vignettes that attempt to place ethical principles into familiar clinical settings involving physicians, patients and their families.

Publisher

Georg Thieme Verlag KG

Subject

Neurology (clinical),Neurology

Cited by 5 articles. 订阅此论文施引文献 订阅此论文施引文献,注册后可以免费订阅5篇论文的施引文献,订阅后可以查看论文全部施引文献

1. Ethical Considerations in Dementia Diagnosis and Care;Neurology;2021-07-12

2. Presumed spinocerebellar ataxia 7: challenges without molecular diagnosis;Clinical and Experimental Optometry;2021-02-25

3. Disclosure of individual research results at federally funded Alzheimer's Disease Research Centers;Alzheimer's & Dementia: Translational Research & Clinical Interventions;2021-01

4. Genetic counseling;Rosenberg's Molecular and Genetic Basis of Neurological and Psychiatric Disease;2020

5. First Responder to Genomic Information: A Guide for Primary Care Providers;Molecular Diagnosis & Therapy;2019-06-07

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3