[Ethical Issues of Genetic Testing towards Hereditary Neurological Disorders]
1Department of Public Policy, Human Genome Center, The Institute of Medical Science, The University of Tokyo.
Abstract:
The purpose of this paper is to review and introduce several topics regarding clinical ethics of hereditary neurological disorders. The author reflects the historical background about "right to know" and "right not to know" the results of genetic testing in 1990s, including pediatric genetic testing. Twenty years after, advanced genome sequencing technologies enable us to analyze whole genome while they also encourage us to reconsider the ethical norms. The current topics are such us secondary findings and actionability, support for telling the genetic secrets to biological relatives, duty of confidentiality and duty of care to third parties, indivisibility in research and diagnosis and pre-implantation genetic testing for monogenic/single gene defects.
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