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
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
2
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
3
I. The Inception of ELSI Program in Korea
• R&D Funding
Biotechnology R&D in Korea
700.0
Billion Won
600.0
500.0
400.0
public
private
300.0
200.0
100.0
0.0
94
95
96
97
Year
98
99
00
01
4
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)
5
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
6
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
7
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 bottomup independent research
8
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
9
II. The Objective and Strategy of the ELSI Program
II-3. Structure
Literature Review
June
’01
 Monthly
Seminar
June
’02
 Website
 Journal
Issue
&
Case
Analysis
 Publica
-tions
Edu/Com/
Issue
Participation
Analysis
Models
Workshop
Guideline
Draft
Sampling
Design
Need
Analysis
Questionnaire
Pilot Survey
Model
General Opinion Leader
Modification Survey
Survey
Stakeholder Review
Analysis
Guideline + Models
ELSI Korea
DB
Planning
June
’03
ELSI
Infra
ELSI
Planning
Core Research :
Genetic Info. Protection
ELSI Korea DB 10
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
11
III. Core Research : Protection of Human Genetic
Information
III-2. Research Team
Principal
Investigator
Jeong–Ro Yoon
KAIST, Sociology
Ethics
Law /
MD
Communication
Education
C. Yim
K.Chung
S. Cho
K. Choi
SKK
Univ.
Hanyang
CNU
Ewha
Univ.
Univ.
STS
Participation/
NGO
Case
Study
(Biology)
Y. Lee
Catholic
Univ.
H. Kim
SNU
12
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.
13
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 communication 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.
14
IV. ELSIKOREA Database : Social Surveys
DATE
Topic
Method
Sample
Oct.
2001
Biotech Issues
Telephone
500 (age≧20)
Mar.
2002
Stem Cell
Telephone /
Research
Internet
2,000 for internet,
1,000 for telephone
(age≧20)
Genetic Privacy
Telephone
1,100 (age≧16)
Biotech Issues
Telephone /
Internet/
200 biotechnology scientist,
Oct.
2002
May
2003
Cellular Phone
50 journalist, and 2,000 lay
citizen (age≧16)
15
IV. ELSIKOREA Database : Social Surveys
 Inconsistent Perception of Biotechnology
(1) Perception of Medical and Social Applications,
October 2001
Unit : %
Gene
Testing /
Therapy
Fetal
Testing /
Screening
XenoTransplant
Gene testing
for 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
16
IV. ELSIKOREA Database : Social Surveys
(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
17
IV. ELSIKOREA Database : Social Surveys
(3) Inconsistency in the Opinions on Human
Cloning
(number of responses / %)
Should be Should not be
Allowed
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
18
IV. ELSIKOREA Database : Social Surveys
 Promise over Privacy, October 2002
(1) What would you do if requested to allow your
blood sample for medical check-up to be
used for research?
(n=927)
allow
20%
53%
26%
ask for
information
not allow
don't know
19
IV. ELSIKOREA Database : Social Surveys
(2) What would you do if your blood sample
collected in the process of medical checkup and treatment were used for other
purposes without being informed?
(n=927)
don't care
40%
57%
don't care if
not against
interest
do care
don't know
20
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
21
IV. ELSIKOREA Database : Social Surveys
What do you think about the following cases?
insurance
definitely
needed
problematic
but needed
unneeded
employees
forensic use
don't know
children
0%
20%
40%
60%
80% 100%
22
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.
23
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
24
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.
25