Premium
Ethical issues in the evaluation of adults with suspected genetic neuromuscular disorders
Author(s) -
Su Xiaowei,
Kang Peter B.,
Russell James A.,
Simmons Zachary
Publication year - 2016
Publication title -
muscle and nerve
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.025
H-Index - 145
eISSN - 1097-4598
pISSN - 0148-639X
DOI - 10.1002/mus.25400
Subject(s) - medicine , myasthenia gravis , neuromuscular junction , neuromuscular disease , physical medicine and rehabilitation , psychology , neuroscience , psychiatry , disease
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