1 Shaping Social Opinions of Stem Cell Research in Taiwan Prof. Tsai, Duujian.

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1 Shaping Social Opinions of Stem Cell Research in Taiwan Prof. Tsai, Duujian

2 Background Stem Cell Research: brings out new viewpoints on disease therapy, diagnosis and prevention. relating to ELSI issues, such as embryo living rights, social ethics and human-being values. considers the perception and acceptability on the research and its applications in public. Merge the public consensus into the fundamental ethical and legal governance framework.

3 Taiwan Genomic Survey by Academia Sinica Population :≧ 18 y/o people in Taiwan Sampling : Random Sampling by telephone number. Method : based on telephone survey; interview and focus group are in supplementary. Survey Interval : 1-3 times annually since Main Topics : Genomic Medicine and Agricultural Biotechnology.

4 The limitations in Taiwan Genomic Survey Samplings of the survey toward all population. Therefore, - The specialty of stem cell itself is ignored. - The more understanding on steam cell, the better attitude shaped. - Limited understanding on the multiple applications of stem cell. Selective Sampling

5 Have you ever heard “ Stem Cell ” ? Frequency % Never % I've heard, but not understood % I've heard, and somewhat understood % I've heard, and highly understood252.30% Total %

6 Have you ever heard "Stem Cell"? Never I've heard, but not understood I've heard, and somewhat understoo d I've heard, and highly understoo d Total Education Level Junior High School and under 12.90%12.80%6.30%0.50%32.60% 40%39%19%1%100% Senior High School and Junior College 1.50%16.80%15.30%1.00%34.60% 4%49%44%3%100% Undergraduate and Above 1.10%10.80%18.10%2.80%32.80% 3%33%55%8%100% Unanswered 0.10%

7 Have you ever heard "Stem Cell"? Never I've heard, but not under stood I've heard, and some what under stood I've heard, and highly under stood Total Religious Without 2.20%8.90%9.30%1.60%21.90% 10%41%42%7%100% With 13.30%31.60%30.50%2.80%78.10% 17%40%39%4%100%

8 Technically Speaking, Do you think scientists can make followings by using "Human Stem Cell" ? Have you ever heard "Stem Cell"? Heard, but not understoodHeard, and understood Cultivate Human Spinal Marrow Yes 68.00%87.90% No 7.10%4.30% Unknown 24.90%7.80% Cultivate Human Livers Yes 36.70%49.80% No 26.20%27.60% Unknown 37.20%22.60% Cultivate Ornamental Plants Yes 23.70%22.60% No 40.60%54.10% Unknown 35.70%23. 3% Cultivate Pig's Hearts Yes 29.30%28.00% No 34.00%49.00% Unknown 36.70%23.00%

9 Do you Agree or Disagree ? Agree Disagre e No Comme nt No Respon se Total It's unmoral to use biotechnology in human cloning Frequency %45.00%34.00%11.10%9.80%100% It's unmoral to use biotechnology in human organ cloning Frequency %32.80%49.40%7.80%9.90%100%

10 The Target Population of Our Research Religious Personnel : Christian, Catholic, Buddhist, Taoism and Islam. Academic Expert : professional in philosophy, medicine, psychology, public health, sociology etc. Medical Personnel : physicians, nurses, social workers. Medical Resource User : organ donators/recipients, infertility patients, and rare disease patients. Legal Professional : lawyers, staffs in legal films. Civil Service : governmental officers. Student : college and university students General Public : persons who have been interested and involved in biotechnology.

11 The limitations in Taiwan Genomic Survey (Con’t) Various concepts related genome and biotechnology are covered in single survey. Topics: Human Cloning, Stem Cell, Gene Test, Biobank, Genetic Modification Food. Do they really understand the difference?? It may confuse or mislead respondents in a way of ambitious concepts.

12 Should the survey be more specific on Stem Cell solitarily ? BiobankStem Cell Focus on Public HealthFocus on Medicine Long-term following in Epidemiology The application to Medical Technology Population’s health and wellbeing Individual’s dignity, rights and interests

13 The Process of Questionnaire Design Literature Review: ELSI perspectives and legislation on stem cell in leading countries. Consensus Meeting: 1.To collect the perception and ELSI issues among communities, and the points they concern about. 2.To discuss the proper ethical and legal governance framework in stem cell research. 3.To promote the communication and cooperation among communities through “empowerment” strategy. The Test of Reliability and Validity

14 The Dimensions of Questionnaire The knowledge and perception of stem cell and the embryo identity. The definition and attitude of stem cell under the researches of the ethical and legal governance framework. The acceptability of stem cell research and it’s applications within Taiwan culture and environment. Based on the purpose of medical treatment, the conflict value on living and its diverse opinions. The applications, goals and values in stem cell and embryo identities, according to the ethical and legal framework.

15 The Content of Questionnaire I. Embryo Stem Cell Research What does embryo present in the stem cell research? How do you consider the values of embryo? what kind of development stem cell can function? ( multiple choice ) Do you know what achievement the stem cell research will conduct? (multiple) Do you agree with the sources as following for stem cell research? (multiple) Do you agree to destroy the embryo in which has been selected to produce embryo stem cell?

16 The Content of Questionnaire II. Human Cell Nucleus Transplant Technology Do you agree following researches based on human cell nucleus transplant technology? (multiple) Do you agree to use donated cell for the human cell nucleus transplant technology? Do you support the experiment on human cell nucleus transplant technology? Will you donate your own cell for the experiment on human cell nucleus transplant technology? Will you donate your own ovum for the experiment on human cell nucleus transplant technology? Why are you willing to donate your own cell or ovum for the experiment on human cell nucleus transplant technology? ( multiple ) Why are you not willing to donate your own cell or ovum for the experiment on human cell nucleus transplant technology? ( multiple )

17 The Content of Questionnaire II. Human Cell Nucleus Transplant Technology Will you agree that the research personnel keep in touch with you after your cell or ovum donation? Would you like to receive research information or results after your cell or ovum donation? What do you consider the donation of cell or ovum for the cell nucleus transplant technology? (multiple) Do you agree that human cell nucleus transplant technology should go through the academic ethics examination? Which authority should be the surveillant for the human cell nucleus transplant research? (multiple) Which authority should take part in the human cell nucleus transplant research? (multiple) What should be the reward for the cell or ovum donation? ( multiple )

18 The Content of Questionnaire III. Ethics Committee Do you think that it is necessary to establish an ethics committee to supervise the national stem cell research? What is the basic reason for you to approve an ethics committee? ( multiple ) What is the basic reason for you to against an ethics committee? ( multiple ) What is the obligation and responsibility for an ethics committee to conduct? (multiple) What do you consider the personnel of an ethics committee should be included? (multiple)

19 Conclusion It’s meaningless to ask for public opinions on an issue required conception and understanding. It’s the trigger to comprehend the opinion leaders and stakeholders from selective sampling, instead of general public initially. To incorporate correct and neutral scientific knowledge in a survey form dimensions of Knowledge, Attitude and Practice (KAP), the social opinion survey will not only be a questionnaire but also an educative knowledge medium.

20 What we want to try in the future Survey on public opinions remains significant. The prerequisite of ethical governance guidance on stem cell. Provide further public opinion survey with information and guidance, such as the outcome of previous survey and research toward opinion leaders.

21 Thanks for your attention