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The Current State and Prospect of ELSI Program in Korea Jeong-Ro Yoon Dean and Professor of Sociology, School of Humanities & Social Sciences, KAIST Principal.

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Presentation on theme: "The Current State and Prospect of ELSI Program in Korea Jeong-Ro Yoon Dean and Professor of Sociology, School of Humanities & Social Sciences, KAIST Principal."— Presentation transcript:

1 The Current State and Prospect of ELSI Program in Korea Jeong-Ro Yoon Dean and Professor of Sociology, School of Humanities & Social Sciences, KAIST Principal Investigator of ELSI Project, Center for Functional Analysis of Human Genome jryoon@kaist.ac.kr

2 2Contents I. The Inception of the Korean ELSI Program II. The Objective and Strategy of ELSI Program III. Core Research : Protection of Human Genetic Information IV. ELSIKOREA Database : Social Surveys V. ELSI Infrastructure VI. Future Direction

3 3 Social Background Social Background Controversy on GMOs, Human Cloning,  and Stem Cell Research from the late  1990’s Drive for Biotechnology in Korea I. The Inception of the Korean ELSI Program

4 4 I. The Inception of ELSI Program in Korea R&D Funding

5 5 ■ Frontier Projects (Government Supported 10-year R&D Projects) Functional Analysis of Human Genome (’00) Functional Analysis of Food Plant Genome (’01) Cell Application Research (’02) Proteomics Research (’02) I. The Inception of the Korean ELSI Program

6 6 Regulations and Legislation Regulations and Legislation need for regulatory mechanism attempts at legislation by Ministry of Health and Welfare and Ministry of Science and Technology I. The Inception of the Korean ELSI Program

7 7 II-1. The Objective Facilitate the ELSI studies in Korea Provide the foundation for public  understanding and social consensus  on human genome research Provide the data for policy-making II. The Objective and Strategy of the ELSI Program

8 8 II-2. Strategy Interdisciplinary approach Consultation with specialists in a wide  range of fields Top-down team project and bottom-  up independent research II. The Objective and Strategy of the ELSI Program

9 9 II-2. Strategy Project Modules ˙ Core Research : The protection of human genetic information ˙ ELSIKOREA database : social surveys ˙ ELSI Infrastructure ˙ ELSI planning II. The Objective and Strategy of the ELSI Program

10 10 II-3. Structure II. The Objective and Strategy of the ELSI Program Literature Review Issue & Case Analy- sis June ’01 ELSI Infra ELSI Planning Core Research : Genetic Info. Protection ELSI Korea DB Issue Analysis Edu/Com/ Participation Models Sampling Design Need Analysis Pilot Survey Questionnaire Workshop Planning Guideline Draft Model Modification Stakeholder Review Guideline + Models General Survey Opinion Leader Survey Analysis ELSI Korea DB  Monthly Seminar  Website  Journal  Publica  -tions June ’02 June ’03

11 11 III-1. Why the issue? urgent for policy making r equires interdisciplinary and teamwork  approach significant social and academic impact needs to satisfy the global standard III. Core Research : Protection of Human Genetic Information Information

12 12 Jeong–Ro Yoon KAIST, Sociology Principal Investigator C. Yim SKK Univ. Ethics S. Cho CNU Commu- nication Y. Lee Catholic Univ. Partici- pation/ NGO H. Kim SNU Case Study (Biology) K.Chung Hanyang Univ. Law / MD STS Education K. Choi Ewha Univ. III-2. Research Team III. Core Research : Protection of Human Genetic Information Information

13 13 - III-3. The Results Identify the cases of abuse and misuse  of human genomic information in Korea. Develop the draft of guideline of the  human genome research, IRB guideline  and an informed consent form  : The issues covered include the  collection of samples, informed  consent, protection of genetic  privacy, genetic testing, and  genetic counseling. III. Core Research : Protection of Human Genetic Information Information

14 14 - Provide annotated comments on the  guideline from the ethical and legal  perspectives to facilitate the implementation  of the guideline. Develop suggestions for better commu-  nication between scientists and the public  through mass media, based on the contents  analysis of newspaper articles and social  surveys in Korea. Comparative analysis of public participation  and education, abroad and domestic. III. Core Research : Protection of Human Genetic Information Information

15 15 IV. ELSIKOREA Database : Social Surveys DATE TopicMethodSample Oct. 2001 Biotech IssuesTelephone 500 (age ≧ 20) Mar. 2002 Stem Cell Research Telephone / Internet 2,000 for internet, 1,000 for telephone (age ≧ 20) Oct. 2002 Genetic PrivacyTelephone 1,100 (age ≧ 16) May 2003 Biotech Issues Telephone / Internet/ Cellular Phone 200 biotechnology scientist, 50 journalist, and 2,000 lay citizen (age ≧ 16)

16 16 Inconsistent Perception of Biotechnology (1) Perception of Medical and Social Applications, October 2001 Unit : % Gene Testing / Therapy Fetal Testing / Screening Xeno- Transplant Gene testing for employm’t Govt. mag’t. of gene data Positive65.256.660.631.423.2 Negative 10.214.022.632.646.8 DK24.629.416.836.030.0 IV. ELSIKOREA Database : Social Surveys

17 17 (2) Perception of GMO Tofu, October 2001 Frequency% Will take 152 30.4 Won’t if allowed23547.0 Won’t11322.6 Total500100.0 IV. ELSIKOREA Database : Social Surveys

18 18 (3) Inconsistency in the Opinions on Human Cloning Should be Allowed Should not be Allowed Don’t know Total Assisted reproduction for infertile couples 48.6% 30.6%20.8%755 Human cloning 9.3%71.2%19.5%1000 (number of responses / %) IV. ELSIKOREA Database : Social Surveys

19 19 (1) What would you do if requested to allow your blood sample for medical check-up to be used for research? (n=927) 26% 53% 20% IV. ELSIKOREA Database : Social Surveys Promise over Privacy, October 2002

20 20 (2) What would you do if your blood sample collected in the process of medical check- up and treatment were used for other purposes without being informed? (n=927) 57% 40% IV. ELSIKOREA Database : Social Surveys

21 21 (3) What do you think about the following cases? ˙ genetic testing for insurance ˙ genetic testing for new employees ˙ genetic databanks for forensic use ˙ genetic databanks for institutionalized children IV. ELSIKOREA Database : Social Surveys

22 22 What do you think about the following cases? IV. ELSIKOREA Database : Social Surveys

23 23 Website for research information  http://www.elsikorea.org : database for ELSI  literature in Korean with the bibliographic  information including contents and abstract. Monthly ELSI seminar from September 2002. Journal of ELSI Studies : the first issue in  April 2003, Bi-annual. ELSI Series Books to be published from fall,  2003. V. ELSI Infrastructure

24 24 ELSI Resources Series : survey data, international  documents, newspaper analysis ˙ 2002-1 Social Perception Survey on Biotechnology, 2001 ˙ 2002-2 Social Perception Survey on the Stem Cell Research, 2002 ˙ 2002-3 Social Perception Survey on the Protection of Genetic Information, 2002 ˙ 2002-4 Principles of Human Genome Research in Japan ˙ 2003-1 Analysis of Newspaper Articles, 1995-2002 V. ELSI Infrastructure

25 25 Encourage the participation of diverse  specialists in a wide range of fields. Support the practical activities for education,  communication, and voluntary participation as  well as academic research. Encourage the international activities.  International exposure of Korean ELSI research Hosting international conferences Joint projects for research, social surveys, media analysis, and etc. VI. Future Direction


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