From Principles to Guidelines --Bioethics and Cultural Pluralism in Taiwan

1. From Principles to Guidelines--Bioethics and Cultural Pluralism in Taiwan Panelist：Lee, Chung-Hsi

2. Bioethics and Ethnic • Bioethics in globalizing • Rapid spread of biotech worldwide • HUGO Statements • WHO Guidelines • UNESCO Declarations • Cultural pluralism for minorities • A person’s identity includes biological, psychological, social, cultural and spiritual dimensions • Biotech impacts to minorities

3. Cultural pluralism in UNESCO • Article 6 (Consent) • In appropriate cases of research carried out on a group of persons or a community, additional agreement of the legal representatives of the group or community concerned may be sought. • Article 11 (non-discrimination) • No individual or group should be discriminated against or stigmatized on any grounds, in violation of human dignity, human rights and fundamental freedoms. • Article 12 (respect for cultural diversity) • The importance of cultural diversity and pluralism should be given due regard.

4. Taiwan in focus • Ethnical diversity • Thirteen Austronesian groups recognized • Three Chinese groups in mainstream society • Democratization and indigenous autonomy • Advanced biotechnology • National genomic research project • Constructing Taiwan Biobank • ELSI and research ethics became social concerns

5. Indigenous peoples in Taiwan • History • Entered Taiwan from 4000 B.C. to 3000 B.C. • Colonized and exploited by Dutch, Japanese, Chinese • Diversity • 13 tribes recognized: Atayal, Saisiyat, Bunun, Tsou, Rukai, Paiwan, Puyuma, Amis, Yami, Thao, Kavalan, Truku, and Sakizaya • Many tribal communities in each tribe

6. Their status after democratization • Political status • Council of Indigenous People set up in 1996 • Preserved 6 seats in Congress (all in 113) • Legal protection • Declared “cultural pluralism protection” in Constitution (1997) • “Basic Law of Indigenous Peoples” enacted in 2005

7. Research ethics in BLIP • Article 21 • government or individuals must consult with the indigenous peoples and get their consent or attendance before they exploit land, utilize resources, protect ecology and do academic research inside indigenous peoples’ land, and the benefits should be shared with indigenous people

8. Bioethics and cultural pluralism • Is there a pluralistic bioethics view? • Will respect for cultural pluralism violate human rights? • What does respect mean? • What can indigenous peoples’ bioethics suggest to us? • Right of health is the most crucial issue in bioethics and human rights

9. Guidelines for research ethics (1) • Norm 1 (Consent) • Every genetic study activity involving indigenous people should try to get that ethnic group’s consent besides a general examination of its ethics by IRB • Originate from UNESCO Declaration and article 21 in BLIP • Norm 2 (health duty) • Biomedical research should regard improving the health situation of indigenous peoples as its tenet • Article 14 of UNESCO and article 24 in BLIP

10. Guidelines for research ethics (2) • Norm 3 (benefit sharing) • Biomedical research should layout the patterns of sharing benefit, among which the most proper one is the feedback of the health care resources • Article 15 in UNESCO • Other statements of HUGO, WHO, etc.

11. Thank You for Listening