行政院國家科學委員會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(I)
Date Issued
2003
Date
2003
Author(s)
蔡甫昌
DOI
913112H002004
Abstract
The rapid development of genetic technology has created many new facets of
modern medical practice which urged the medical profession to move beyond its
traditional ways of medical service providing. The medical information acquired
from genetic diagnosis is by no means easy to handle for both health care providers
and patients, and the application of such information involves a variety of ethical,
legal and psychosocial issues, of which the implication and impact should be
carefully examined. Genetic counseling has therefore become a crucial process in the
performing, the disclosing, and subsequent disposition of a genetic diagnosis. 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 year, we:
(1) Investigate, define, and categorize the commonly encountered ethical
problems in the process of performing genetic diagnosis and genetic counseling,
specifically in the Taiwanese context, through literature review, focus group
interview, and expert meetings.
(2) Articulate the fundamental ethical and philosophical debates of these problems,
and explore into these ethical concepts such as ‘the fetus’ right to life’,
‘confidentiality of genetic information’, ‘patients’ autonomy’ and etc.
So far we have taken a stepwise approach and 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 intend to delineate a framework and classification of the ethical
issues arising from genetic counseling firstly through reference review.
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, and nursing with an
open-ended questionnaire to verify the ethical-legal issues encountered in their
daily genetic practice. With such information we can vindicate the primary, major
and specific ethical issues and dilemmas confronting Taiwanese medical
practitioners and consultants.
3.Exploring the philosophical questions of “the wrongfulness of wrongful life”
and “genetic enhancement”.
4.Setting up the paradigm cases concerning ethics in genetic counseling using a
scenario-approach.
Next step, 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. At the same time, we will
continue reviewing and translating the reports and guidelines on genetic counseling
from the world principal medical associations and advisory committees on bioethics,
including WHO, ASHG, AMA, BMA, CMA, etc.
Subjects
genetic diagnosis
genetic screening
genetic testing
genetic counseling
gene therapy
bioethics
principlism
abortion
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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