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The Current State and Prospect of The Current State and Prospect of ELSI Program in KoreaELSI Program in Korea
Jeong-Ro YoonDean and Professor of Sociology,
School of Humanities & Social Sciences, KAISTPrincipal Investigator of ELSI Project,
Center for Functional Analysis of Human Genome
jryoon@kaist.ac.kr
2
ContentsContents
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
Social BackgroundSocial 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
Biotechnology R&D in Korea
0.0
100.0
200.0
300.0
400.0
500.0
600.0
700.0
94 95 96 97 98 99 00 01
Year
Bill
ion
Won
publicprivate
I. The Inception of ELSI Program in KoreaI. The Inception of ELSI Program in Korea
• R&D Funding
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■ 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
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Regulations and LegislationRegulations 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
II-1. The ObjectiveII-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 ProgramII. The Objective and Strategy of the ELSI Program
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II-2. StrategyII-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 ProgramII. The Objective and Strategy of the ELSI Program
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II-2. StrategyII-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 ProgramII. The Objective and Strategy of the ELSI Program
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II-3. StructureII-3. Structure
II. The Objective and Strategy of the ELSI ProgramII. The Objective and Strategy of the ELSI Program
Literature Review
Issue&
Case
Analy-sis
June’01
ELSIInfra
ELSIPlanning
Core Research : Genetic Info. Protection ELSI Korea DB
IssueAnalysis
Edu/Com/Participation
Models
Sampling Design
Need Analysis
Pilot Survey
Questionnaire
Workshop
Planning
GuidelineDraft
ModelModification
Stakeholder Review
Guideline + Models
GeneralSurvey
Opinion LeaderSurvey
Analysis
ELSI Korea DB
Monthly Seminar
Website
Journal
Publica-tions
June’02
June’03
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III-1. Why the issue?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
III. Core Research : Protection of Human GeneticIII. Core Research : Protection of Human Genetic InformationInformation
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Jeong–Ro YoonKAIST, Sociology
PrincipalInvestigator
C. Yim
SKK Univ.
Ethics
S. Cho
CNU
Commu-nication
Y. Lee
CatholicUniv.
Partici-pation/NGO
H. Kim
SNU
Case Study
(Biology)
K.Chung
Hanyang Univ.
Law /MD
STS Education
K. ChoiEwhaUniv.
III-2. Research TeamIII-2. Research Team
III. Core Research : Protection of Human GeneticIII. Core Research : Protection of Human Genetic InformationInformation
13
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III-3. The ResultsIII-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 GeneticIII. Core Research : Protection of Human Genetic InformationInformation
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-
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 GeneticIII. Core Research : Protection of Human Genetic InformationInformation
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IV. ELSIKOREA Database : Social SurveysIV. ELSIKOREA Database : Social Surveys
DATE Topic Method Sample
Oct.2001 Biotech Issues Telephone 500 (age 20)≧
Mar.2002
Stem Cell
Research
Telephone /
Internet
2,000 for internet, 1,000 for telephone
(age 20)≧
Oct.2002 Genetic Privacy Telephone 1,100 (age 16)≧
May2003 Biotech Issues
Telephone /Internet/
Cellular Phone
200 biotechnology scientist,50 journalist, and 2,000 lay
citizen (age 16)≧
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Inconsistent Perception of Biotechnology
(1) Perception of Medical and Social Applications, October 2001
Unit : %Gene
Testing /Therapy
FetalTesting /
Screening
Xeno- Transplant
Gene testingfor employm’t
Govt. mag’t. of gene data
Positive 65.2 56.6 60.6 31.4 23.2
Negative 10.2 14.0 22.6 32.6 46.8
DK 24.6 29.4 16.8 36.0 30.0
IV. ELSIKOREA Database : Social SurveysIV. ELSIKOREA Database : Social Surveys
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(2) Perception of GMO Tofu, October 2001
Frequency %
Will take 152 30.4
Won’t if allowed 235 47.0
Won’t 113 22.6
Total 500 100.0
IV. ELSIKOREA Database : Social SurveysIV. ELSIKOREA Database : Social Surveys
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(3) Inconsistency in the Opinions on Human Cloning
Should beAllowed
Should not beAllowed
Don’t know Total
Assistedreproduction forinfertile couples
48.6% 30.6% 20.8% 755
Human cloning 9.3% 71.2% 19.5% 1000
(number of responses / %)
IV. ELSIKOREA Database : Social SurveysIV. ELSIKOREA Database : Social Surveys
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(1) What would you do if requested to allow your blood sample for medical check-up to be used for research?
(n=927)
allow
ask forinformationnot allow
don't know
26%
53%
20%
IV. ELSIKOREA Database : Social SurveysIV. ELSIKOREA Database : Social Surveys
Promise over Privacy, October 2002
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(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?
don't care
don't care ifnot againstinterestdo care
don't know
(n=927)
57%
40%
IV. ELSIKOREA Database : Social SurveysIV. ELSIKOREA Database : Social Surveys
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(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 SurveysIV. ELSIKOREA Database : Social Surveys
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What do you think about the following cases?
0% 20% 40% 60% 80% 100%
children
forensic use
employees
insurance
definitelyneededproblematicbut neededunneeded
don't know
IV. ELSIKOREA Database : Social SurveysIV. ELSIKOREA Database : Social Surveys
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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
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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
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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 DirectionVI. Future Direction
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