건강인 대상 Direct to Consumer Genetic Test의 사회적·윤리적 쟁점
Direct to Consumer Genetic Tests and Its Social and Ethical Implications
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초록
Direct to consumer genetic test(hereafter DTC GT) is defined as genetictest or service which is marketed directly to consumers, purchased accordingto consumer’s requests, and provide its result directly to consumers withoutthe intervention of healthcare professionals. DTC GT companies haveclaimed various putative benefits of DTC GT, but there are concernsregarding interpretation of health related information without personalizedmedical supervision and genetic consultation as well as accuracy and utilityof those tests. It is necessary to find out the impacts of DTC GT on consumers inorder to assess benefits and harms of DTC GT. This paper deals with ethicaland social implications of DTC GT. First, it will identify marketing ideologyof DTC GT. Second, it will examine consumer’s motivation and find outwhether DTC GT is equipped with scientific and clinical accuracy and utilityto meet their satisfaction. Last, it will address policy and regulation of EUand US regarding DTC GT and discuss obligation of health careprofessionals and necessity of citizens’ education.
Abstract
Direct to consumer genetic test(hereafter DTC GT) is defined as genetictest or service which is marketed directly to consumers, purchased accordingto consumer’s requests, and provide its result directly to consumers withoutthe intervention of healthcare professionals. DTC GT companies haveclaimed various putative benefits of DTC GT, but there are concernsregarding interpretation of health related information without personalizedmedical supervision and genetic consultation as well as accuracy and utilityof those tests. It is necessary to find out the impacts of DTC GT on consumers inorder to assess benefits and harms of DTC GT. This paper deals with ethicaland social implications of DTC GT. First, it will identify marketing ideologyof DTC GT. Second, it will examine consumer’s motivation and find outwhether DTC GT is equipped with scientific and clinical accuracy and utilityto meet their satisfaction. Last, it will address policy and regulation of EUand US regarding DTC GT and discuss obligation of health careprofessionals and necessity of citizens’ education.
참고문헌 (10)
- Cinnamon S. Bloss, "Effect of Direct-to-Consumer Genomewide Profiling to Assess Disease Risk", The New England Journal of Medicine, 364(6) (2011)
- "Direct to Consumer Genetic Testing", The National Academy Press
- Direct-to-consumer genetic testing for health-related purposes in the European Union, "Direct-to-consumer genetic testing for health-related purposes in the European Union", Federation of European Academies of Medicine, 2012
- "Direct-to-Consumer Genetic Testing, Report of the Secretry’s Advisory Committee on Genetics", Health, and Society (2010)
- Jennifer Fishman, "The Bioethics and Biopolitics of Personalized Medicine", The Bioethics and Biopolitics of Personalized Medicine, Biopolitics and Bioethics in the 21st Century SSK 1st International Workshop (2012), Kookmin University
- Katherine Hamon, "Genome Sequencing for the Rest of Us, Scientific American, Mon. June 28, 2010", ~ (2010)
- National Human Genome Research Institute, "Genetic Testing, National Institute of Health, U.S. Department of Health and Human Services", ~
- Nicholas J. Roberts, "The Predictive Capacity of Personal Genome Sequencing", Translational Medicine (2012)
- Resta R, "A new definicion of genetic counseling: National Society of Genetic Counselors’Task Force report", Journal of Genentic Counseling, 15(2) (2006)
- The American Society of Human Genetics, "ASHG Statement on Directto- Consumer Genetic Testing in the United States(www.ajhg.org)", The American Journal of Human Genetics, 81 (2007)