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The Current State and Prospect of ELSI Program in Korea

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. Contents.

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The Current State and Prospect of ELSI Program in Korea

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

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

  5. I. The Inception of the Korean ELSI Program ■ 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)

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

  7. II. The Objective and Strategy of the ELSI Program 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

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

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

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

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

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

  13. III. Core Research : Protection of Human Genetic Information 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. -

  14. III. Core Research : Protection of Human Genetic Information • 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. -

  15. IV. ELSIKOREA Database : Social Surveys

  16. IV. ELSIKOREA Database : Social Surveys • Inconsistent Perception of Biotechnology (1)PerceptionofMedicalandSocial Applications, October 2001 Unit : %

  17. IV. ELSIKOREA Database : Social Surveys • (2) Perception of GMO Tofu, October 2001

  18. IV. ELSIKOREA Database : Social Surveys • (3) Inconsistency in the Opinions on Human • Cloning (number of responses / %)

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

  20. IV. ELSIKOREA Database : Social Surveys (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) 40% 57%

  21. IV. ELSIKOREA Database : Social Surveys • (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

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

  23. V. ELSI Infrastructure • 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.

  24. V. ELSI Infrastructure • 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

  25. VI. Future Direction • 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.

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