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 Genomejryoon@kaist.ac.kr

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ContentsContents

I. The Inception of the Korean ELSI ProgramII. The Objective and Strategy of ELSI ProgramIII. Core Research : Protection of Human Genetic Information

IV. ELSIKOREA Database : Social SurveysV. ELSI InfrastructureVI. Future Direction

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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

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Biotechnology R&D in Korea

0.0100.0200.0300.0400.0500.0600.0700.0

94 95 96 97 98 99 00 01Year

Billio

n 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

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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. StructureII. 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. LeeCatholic

Univ.

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

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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 SampleOct.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-

TransplantGene testing

for employm’tGovt.

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