건강인 대상 Direct to Consumer Genetic Test의 사회적·윤리적 쟁점 = Direct to Consumer Genetic Tests and Its Social and Ethical Implications

다국어 초록 (Multilingual Abstract)

Direct to consumer genetic test(hereafter DTC GT) is defined as genetic test or service which is marketed directly to consumers, purchased according to consumer’s requests, and provide its result directly to consumers without the intervention of healthcare professionals. DTC GT companies have claimed various putative benefits of DTC GT, but there are concerns regarding interpretation of health related information without personalized medical supervision and genetic consultation as well as accuracy and utility of those tests.
It is necessary to find out the impacts of DTC GT on consumers in order to assess benefits and harms of DTC GT. This paper deals with ethical and social implications of DTC GT. First, it will identify marketing ideology of DTC GT. Second, it will examine consumer’s motivation and find out whether DTC GT is equipped with scientific and clinical accuracy and utility to meet their satisfaction. Last, it will address policy and regulation of EU and US regarding DTC GT and discuss obligation of health care professionals and necessity of citizens’ education.

목차 (Table of Contents)

• Ⅰ. 들어가는 말 2
• Ⅱ. 현황 2
• Ⅲ. DTC GT의 정의와 관련 상품 및 마케팅 4
• Ⅳ. DTC GT 관련 과학적·사회적·윤리적 쟁점 10
• Ⅴ. DTC GT 관련 정책 및 규제 12
• Ⅵ. 나가는 말 17

참고문헌 (Reference)

1 Nicholas J. Roberts, "The Predictive Capacity of Personal Genome Sequencing" 2012

2 Jennifer Fishman, "The Bioethics and Biopolitics of Personalized Medicine" Kookmin University 2012

3 Katherine Hamon, "Genome Sequencing for the Rest of Us, Scientific American, Mon. June 28, 2010"

4 National Human Genome Research Institute, "Genetic Testing, National Institute of Health, U.S. Department of Health and Human Services"

5 Cinnamon S. Bloss, "Effect of Direct-to-Consumer Genomewide Profiling to Assess Disease Risk" 364 (364): 2011

6 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"

7 "Direct-to-Consumer Genetic Testing, Report of the Secretry’s Advisory Committee on Genetics" 2010

8 "Direct to Consumer Genetic Testing" The National Academy Press

9 The American Society of Human Genetics, "ASHG Statement on Directto- Consumer Genetic Testing in the United States(www.ajhg.org)" 81 : 2007

10 Resta R, "A new definicion of genetic counseling: National Society of Genetic Counselors’Task Force report" 15 (15): 2006