Literature DB >> 27615030

Ethical issues in the evaluation of adults with suspected genetic neuromuscular disorders.

Xiaowei Su1, Peter B Kang2, James A Russell3, Zachary Simmons4.   

Abstract

Genetic testing is rapidly becoming an increasingly significant part of the diagnostic armamentarium of neuromuscular clinicians. Although technically easy to order, the results of such testing, whether positive or negative, have potentially enormous consequences for the individual tested and for family members. As a result, ethical considerations must be in the forefront of the physician's agenda when obtaining genetic testing. Informed consent is an important starting point for discussions between physicians and patients, but the counseling embedded in the informed consent process must be an ongoing part of subsequent interactions, including return of results and follow-up. Patient autonomy, including the right to know and right not-to-know results, must be respected. Considerations of capacity, physician beneficence and nonmaleficence, and privacy all play roles in the process. Muscle Nerve 54: 997-1006, 2016.
© 2016 Wiley Periodicals, Inc.

Entities:  

Keywords:  DNA sequencing; autonomy; beneficence; ethics; genetic testing; neuromuscular disorders

Mesh:

Year:  2016        PMID: 27615030     DOI: 10.1002/mus.25400

Source DB:  PubMed          Journal:  Muscle Nerve        ISSN: 0148-639X            Impact factor:   3.217


  2 in total

1.  Willful ignorance in decision making against or in favor of endoscopy.

Authors:  Amnon Sonnenberg; Peter Bauerfeind
Journal:  United European Gastroenterol J       Date:  2019-12-23       Impact factor: 4.623

Review 2.  Developing multidisciplinary clinics for neuromuscular care and research.

Authors:  Sabrina Paganoni; Katie Nicholson; Fawn Leigh; Kathryn Swoboda; David Chad; Kristin Drake; Kellen Haley; Merit Cudkowicz; James D Berry
Journal:  Muscle Nerve       Date:  2017-08-29       Impact factor: 3.217

  2 in total

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