첨단과학연구의 윤리·법·사회적 함의(ELSI) 연구의 개념과 한국의 ELSI 연구 경험
Ethical, Legal, and Social Implications Research in South Korea
0
조회
0
다운로드
0
인용
0
참고문헌
키워드
초록
첨단과학연구의 윤리·법·사회적 함의 연구(ethical, legal, and social implication study, ELSI 연구)는 1990년대 인간유전체연구의 책임 있는 수행을 위한 노력의 일환으로 도입된 이후 규모가 큰 생명과학 연구에 수반되는 연구 관행이 되었다. ELSI 연구가 수행되어 온 배경, 방법론적 특징 및 비판 등을 고려해볼 때 ELSI 연구는 개별 연구를 종합하여 관리하는 사업으로 이해할 수 있다. 본 글에서는 한국 사회에 맞는 ELSI 연구의 방향성을 다음과 같이 제시하고자 한다. 1) 우선성이 높은 구체적인 이슈에 집중적으로 투자하고, 2) 진행 중인 과학연구와 직접 관계된 ELSI를 수행하며, 3) 법학, 윤리학을 넘어서 사회과학, 특히 경제학이나 인류학, 종교학 등 및 다양한 인문학적 관점을 포섭하는 것이다. 따라서 이를 실현할 수 있는 Top-down 연구와 Bottom-up 연구가 서로 조합을 이루어 다양한 집단의 관점을 반영할 수 있는 환경을 조성하고 폭넓은 연구를 지원할 수 있는 체계를 구축하는 것이 한국 ELSI 연구의 필수적인 과제라고 할 수 있다. 나아가 연구 인프라로서의 서비스를 상시 제공할 수 있는 플랫폼을 구축하여 연구자, 대중, 정부 등 다양한 이해관계자의 소통을 매개하는 것 역시 ELSI 연구의 발전적 지향점으로 삼을 수 있을 것이다.
Abstract
Ethical, legal, and social implications (ELSI) research was introduced in the 1990s as part of an effort to carry out responsible research in human genetics and genomics. Since then it has become a common practice associated with large-scale research in the life sciences. This article argues that ELSI research that is suitable for Korea society should (a) focus on high-priority and specific issues, (b) relate directly to ongoing scientific research, and (c) be informed by a broad range of academic disciplines, including not only law and ethics, but also economics, anthropology and other areas of the humanities and social sciences. It is an essential task of ELSI researchers in Korea to create an environment in which top-down and bottom-up research can be combined to reflect the perspectives of variety of groups and perspectives. A further objective of ELSI research is to establish a research infrastructure to facilitate communication between researchers, the public, the government, and other stakeholders.
참고문헌 (28)
- "ELSI Planning and Evaluation History"[URL]
- "Ethical, Legal and Social Implications Research Program"[URL]
- Stephanie A. Kraft, "Participant Reactions to a Literacy-Focused, Web-Based Informed Consent Approach for a Genomic Implementation Study", AJOB Empirical Bioethics, 12(1), pp.1~11 (2020), Informa UK Limited[DOI]
- Amy L. McGuire, "Informed Consent in Genomics and Genetic Research", Annual Review of Genomics and Human Genetics, 11(1), pp.361~381 (2010), Annual Reviews[DOI]
- Ruhl GL, "Public Attitudes Toward Direct to Consumer Genetic Testing", AMIA Annu Symposium Proc 2019, pp.774~783 (2019)
- Jeong G, "Assessment of Direct-to-Consumer Genetic Testing Policy in Korea Based on Consumer Preference", Public Health Genomi, 20(3), pp.166~173 (2017)
- "Free the National Bioethics Commission" (2003)[URL]
- "Newsletter of the Program on Public Conceptions of Science" (1976)[URL]
- Lindee MS, "The ELSI Hypothesis", Isis, 85(2), pp.293~296 (1994)
- "Report of the Working Group on Ethical, Legal, and Social Issues Related to Mapping and Sequencing the Human Genome" (1990)[URL]
- Collins FS, "New Goals for the U.S. Human Genome Project: 1998-2003", Science, 282(5389), pp.682~689 (1998)
- "Understanding Our Genetic Inheritance: The US Human Genome Project, the First Five Years FY 1991-1995" (1990), NIH Publication
- Watson JD, "Genes and politics", J Mol Med, 75(9), pp.624~636 (1997)
- Wadman M, "High-level ethics committee “needed to guide genetics policy.”", Nature, 385(6619), pp.756~756 (1997)
- "ELSI Planning and Evaluation History"[URL]
- Yoon JR, "Human Genome Research and ELSI Program", J Sci & Tech Studies, 2(1), pp.423~438 (2001)
- Walker RL, "Charting ELSI’s future course : lessons from the recent past", Genet Med, 14(2), pp.259~267 (2012)
- Sankar PL, "The Precision Medicine Initiative’s All of Us Research Program : an agenda for research on its ethical, legal, and social issues", Genet Med, 19(7), pp.743~750 (2017)
- All of Us Research Program, "Ethical, Legal, and Social Implications in the All of Us Research Program: Learnings, Vision, and Approach for Addressing Current and Emergent Issues", ~ (2020)
- McEwen JE, "The Ethical, Legal, and Social Implications Program of the National Human Genome Research Institute : Reflections on an Ongoing Experiment", Annu Rev Genom Hum G, 15(1), pp.1~25 (2014)
- Myskja BK, "We have never been ELSI researchers – there is no need for a post-ELSI shift", Life Sci Soc Policy, 10(1), pp.9~ (2014)
- 우태민, "인공적인, 너무나 자연적인: 포스트 게놈 시대 합성생물학과 트랜스휴머니즘", 과학기술학연구, 16(2), pp.33~63 (2016), 한국과학기술학회[DOI]
- "Review of the Ethical, Legal and Social Implications Research Program and Related Activities (1990-1995)"[URL]
- Timothy Caulfield, "Harm, hype and evidence: ELSI research and policy guidance", Genome Medicine, 5(3), pp.21~21 (2013), Springer Science and Business Media LLC[DOI]
- Go Yoshizawa, "ELSI practices in genomic research in East Asia: implications for research collaboration and public participation", Genome Medicine, 6(5), pp.39~ (2014), Springer Science and Business Media LLC[DOI]
- Balmer AS, "Taking Roles in Interdisciplinary Collaborations : Reflections on Working in Post-ELSI Spaces in the UK Synthetic Biology Community", Sci Technology Stud, 28(3), pp.3~25 (2015)
- John M. Conley, "Is Real-Time ELSI Realistic?", AJOB Empirical Bioethics, 11(2), pp.134~144 (2020), Informa UK Limited[DOI]
- Stilgoe J, "Developing a framework for responsible innovation", Res Policy, 42(9), pp.1568~1580 (2013)