| Summary: | 碩士 === 臺北醫學大學 === 醫學人文研究所 === 98 === Genetic testing can be used to diagnose genetic disorders, or to predict a carrier’s future health. However, genetic testing may also have psychological and social impact on tested individuals, and even their family members. Asymptomatic or predictive genetic testing of minors may generate more controversial ethical, legal and social issues.
The main purpose of this thesis is to explore the ethical and issues involved in the asymptomatic or predictive genetic testing of minors, including: (1) What are the medical considerations for genetic testing of minors? (2) Whether genetic testing would cause psychosocial and social problems for the minors and their families? (3) Whether the rights and interests of minors would be influenced by the decision of their parents? (4) Whether the guidelines developed by the Western countries could be unconditionally applied to our society and culture? (5) What are the clinical experiences and the opinions of our geneticists?
This study is aimed to analyze available literatures regarding the relative guidelines for internal or international professional societies and the national regulations involved in the asymptomatic or predictive genetic testing on the minors, and further interview the expertise in this field to understand the clinical experiences, attitudes, and feelings of the geneticist on this issue. Followings are the main discoveries of this study: (1) All guidelines clearly advanced the idea that the medical benefit is the main justification for asymptomatic or predictive genetic testing of minors, however, issues regarding the psychological or social benefits may be exceptional. (2) In our country, there is no law clearly defining and regulating the genetic testing, and we have only general civil laws and medical laws to deal with genetic testing of minors. Current situation like this may cause various practical problems and controversies. (3) In our country, parents are in fact the decision makers for minors to have genetic testing. (4) The geneticists in our country view this issue positively and negatively. (5) The genetic counseling usually is provided by individual geneticist rather than a team.
According to these findings, we have suggested that: (1) We should set up legal rules about genetic testing to provide reference guidelines for physician and parents. (2) We should establish laws of genetic counselor certification system in cooperation with physicians to provide comprehensive service. (3) We should establish evaluation mechanism according to the medical, psychological, family, social considerations, to achieve the best interests for the minors. (4) Under current legal situations, physicians should provide medical information of genetic testing to individuals and their families in a non-directive manner, and to disclose the psychological, family, social implications. (5) If minors are mature enough, we should respect their autonomy and have their assent before genetic testing. For immature minors, their parents or legal guardian should make the decision according to the best interests of the minors for proceeding asymptomatic or predictive genetic testing.
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