유전 역학적 연구와 생명윤리 및 개인정보 보호

• 영문명: Bioethics and privacy right on genetic epidemiology
• 발행기관: 한국역학회
• 저자명: 김장한(Jang Han Kim)
• 간행물 정보: 『한국역학회지』韓國疫學會誌 第29卷 第1號, 13~20쪽, 전체 8쪽
• 주제분류: 의약학 > 면역학
• 파일형태: PDF
• 발행일자: 2007.06.30

영문 초록

  Unlike the classical genetic study which dealt with the mendelian inheritances of relatively small number of patients, the genetic epidemiology study needs the large scaled genetic data base. The main ethical and legal problems of these kinds of studies are research design, informed consent, long term follow-up of research subjects, data sharing and benefit sharing. Classically, the informed consent was an important right but if these kinds of large scaled and long period studies were involved, the newly developing rights should be more stressed. The bioethics and biosafety act and governmental regulations for the genetic study and gene bank also shows those considerations.
  In EU, the general consent is considered acceptable if the approval of all future projects is fulfilled by a research ethics committee and the participants" right to withdraw samples at any times. In U.S.A., strict restriction is required for future experiments, but if the research involves no more than minimal risk to the subject, the waiver or alternation will not affect adversely the rights and welfare of subjects and the research could not be practicably carried out without the waiver or alteration, the specific future consents could be exempted. Long term follow up of research patients is needed to provide the newly developed information which would be helpful for the patients. Data sharing is needed to prevent the exclusive possession of genetic information. Benefit sharing is the newly coming up debates on how to manage the conflicts of interests between tissue-donors and scientific researchers. The context and inventory of human rights for the research is changing and still under construction.

목차

서론
유전역학 연구의 윤리적 위치
연구 설계시 고려할 점
피험자의 권리 보호 문제
유전자 은행의 정보 공유 문제
유전 역학 연구의 이익 공유 문제
참고문헌
Abstract

키워드

Epidemiology Ethical Genetic Legal Right