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KMID : 1172020150160020067
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Journal of Korean Bioethics Association
2015 Volume.16 No. 2 p.67 ~ p.84
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Hermeneutical Understanding of Disabilities and Law Legal Policy of Gene Testing in Korean Bioethics and Biosafety Act
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Kim Na-Kyoung
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Abstract
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Genetic Diagnosis become routine and common today. But the concern is being raised that the proliferation of genetic diagnosis could distort the understanding of disabilities. For the reasonable legislation for genetic testing the following prerequisites need to be fulfilled: on the one hand, the legislation should be based on the understanding of the structural characteristics of genetic testing. Genetic diagnosis has a dualistic structure consisting of the analysis and interpretation and the structure is open because the diagnosis itself and its result are indefinite. In this context the genetic diagnosis is intrinsically a kind of communication. On the other hand, the legislation needs to reflect the reasonable understanding of genetic disease as disability. The concept of disability consist of (medical) impairment and social exclusion and the impairment has three dimensions, i.e. the intrinsic harm-the positive value formed by the agent who experiences the impairment-the interplay with the social disability. One of the mightiest problem of the Bioethics and Biosafety Act is that this Act lacks the structuralization of the ‘genetic communication’ based on the above-mentioned understanding as preconditions. First of all, the clause for the definition of genetic diagnosis does not clarify the two intrinsic components of the genetic diagnosis. Secondly, the regulation of imformed consent does not state about what the testee needs to be informed concerning the scientific validity, analytical validity and medical usefulness of the diagnosis. Thirdly, there is no regulation for genetic counselling at all. Without the amendment of those clauses concerning the definition and informed consent and the insertion of a clause for genetic counselling the legitimacy of the regulation of genetic diagnosis cannot be ensured.
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KEYWORD
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Genetic Diagnosis, Disability, Genetic Disease, Bioethics and Biosafety Act, (Medical) Impairment, Bioethics
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