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)

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.