미국의 유전자 프라이버시 및 유전자 정보 이용과 관련된 법률 분석 및 맞춤의학에의 시사점
Analysis of U. S. Laws Regarding Genetic Privacy and Use of Genetic Information, and the Implications to Personalized Medicine
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유전자 검사는 의료 및 약학 분야의 산업상 필요와 개인의 프라이버시 보호에 충돌되는 영역으로 알려져 있다. 이에 대하여 미국에서는 ADA, HIPAA, GINA 등 연방의회에서 다양한 법률을 제정하여 충돌되는 법익들의 균형점을 찾으려고 노력해왔다. 본 논문에서는 이러한 법률들의 실행과정에서의 문제점 및 미국 법원의 판례들을 살펴보고, 향후 한국에서 맞춤의학에의 적용과정에서의 시사점에 대하여 논의를 전개하였다. 유전자 정보의 수집 및 활용과 관련하여 유전자 정보를 고용과정에서 차별적으로 활용하는 것에 대하여 개인의 프라이버시 및 연방헌법상 평등권 보호를 위해 미국 연방법률들이 제정되었지만, 관련 산업분야의 산업상 필요성을 고려하여 규정한 많은 예외규정들이 오히려 연방법률들을 제정한 취지를 살리지 못하는 문제점들을 노출시키고 있다. 이러한 문제점들은 향후 우리나라에서 유사한 법률들을 제정하는 경우에 시사점이 될 것이다.
Abstract
The author reviews the kinds of American statutes and case law regarding the utilization and regulation of genetic information obtained for the purpose of applying for insurance coverage. Privacy Act, American Disability Act, Health Insurance Portability and Accountability Act, and Genetic Information Nondiscrimination Act are the main federal statutes designed to regulate the use of the genetic information. Those federal statutes have advantages of protecting against the potential misuse of the genetic information obtained from the individuals who applied for insurance coverage in a life insurance or disability insurance, or who used the genetic services. American common law and states law have insufficient protection measures against any possible abuse of the genetic information because those statutes and the common law use the fiduciary relationship as a basis of protecting the confidential information such as genetic information. However, if any third party not under the fiduciary relationship attempts to divulge such genetic information, then there are no appropriate remedies according to American states' statutes and the common law approach. Therefore, American federal laws were enacted to protect traditionally unprotected areas such as third party's misuse of the genetic information. Reviewing the implications of such federal laws designed to protect the genetic information, more thorough protective provisions are needed to included, since there are too many loopholes in protecting the owners of the genetic information. Any legislative activities for supporting the development of “personalized medicine” shall be waiting for enough discussion of the protection of the legitimate interests of the genetic information owners in terms of new legislation to protect the use of genetic information in Korea.
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