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  4. 行政院國家科學委員會補助專題研究計畫成果報告:遺傳諮商的倫理原則與規則-以原則主義為進路(II)
 
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行政院國家科學委員會補助專題研究計畫成果報告:遺傳諮商的倫理原則與規則-以原則主義為進路(II)

Date Issued
2004
Date
2004
Author(s)
蔡甫昌
DOI
923112H002006
URI
http://ntur.lib.ntu.edu.tw//handle/246246/25674
Abstract
The meaning and impact of genetic information derived from the process of genetic testing are frequently different from that of other kinds of medical laboratory tests. Such results constantly concern individuals as well as the family, and are relevant to current and future diseases that many of them have no effective cure. Genetic counseling hence is very important in the process of performing genetic testing, disclosing the result to the patients or families, and the subsequent disposition of such outcomes. It will therefore, for pragmatic reasons, be beneficial to provide clearly delineated ethical principles and rules in accordance with specific clinical ethical dilemmas in assisting the process of genetic counseling. This research is designed to be completed in three years. In the first two years, we have finished the works as follows: 1. Literature review on topics concerning genetic counseling ethics, ethical guidelines of genetic services, genetic testing/screening ethics, directive/ nondirective genetic counseling, wrongful life, and confidentiality of genetic information. We have delineated, tentatively, a framework and classification of the ethical issues arising from genetic counseling firstly through extensive study. 2. As a pilot study, we have interviewed 10 medical professionals who specialize in and practice genetic medicine in the field of obstetrician/gynecology, pediatrics, neurology, genomic medicine, internal medicine, psychiatry, nursing, and genetic counseling with an open-ended questionnaire to verify the ethical-legal issues encountered in their daily genetic practice as well as the current situation of genetic practice and counseling in Taiwan. With such information we have vindicated the primary, major, and specific ethical issues and dilemmas confronting Taiwanese medical practitioners and genetic counselors. 3. We have explored into the philosophical questions concerning “the wrongfulness of wrongful life” and “genetic enhancement”. We also focused on examining the works of the leading British philosopher and bioethicist, John Harris, and his theories and arguments on genetic testing, genetic screening, the moral status of human embryos and fetus, gender selection, human sources, etc., with a view to deepen our reflection on the fundamental philosophical themes that are closely relevant to the ethical dilemmas arising from genetic counseling and medical decisions confronting patients, families, and genetic practitioners. 4. Based on the result of our interviews, we have developed about 25 paradigmatic cases concerning ethics in genetic counseling. “A scenario-approach to genetic counseling ethics” using classic, common and typical cases is now under construction. 5. We also have collected reports and guidelines of genetic counseling published by world major professional associations. Many of them are translated or summarized. These ethical guidelines are useful for our developing concrete and indigenous ethical guidelines and rules. In the final year, we will continue establishing scenarios and classic cases, analyzing the moral issues involved, exploring the corresponding ethical principles and rules, and discussing and recommending the resolving strategies. We will draft guidelines or recommendations on genetic testing and counseling. This case based ethical principles and rules will be discussed and revised with genetic professionals and counselors to establish institutional ethical guidelines for genetic testing and counseling.
Subjects
genetic diagnosis
genetic screening
genetic testing
genetic counseling
gene therapy
bioethics
principlismp
abortion
SDGs

[SDGs]SDG3

Publisher
臺北市:國立臺灣大學醫學院社會醫學科
Type
journal article
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