Different Models in Governance: National Biobanks in A Comparative Perspective Dr. Chih-hsing Ho Academia Sinica, Taiwan

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Presentation transcript:

Different Models in Governance: National Biobanks in A Comparative Perspective Dr. Chih-hsing Ho Academia Sinica, Taiwan HeLEX Translation in Healthcare Conference 24 June of 201

Purposes Raising questions Spotting issues Getting feedback of 202

“Translation” Legal aspect Transmission of Rules? Legal Transplant ? of 203

“Translation” A process of negotiation between global and different local settings.. of 204

Q: Why biobanking? Q: How has biobanking become a “global phenomenon”? of 205

Perspectives Re-contextualisation Global bio-economies Political Economy of 206

Perspectives Health vs Wealth Trust of 207

Governance Models Soft vs Hard Consent (dynamic, broad; group consent) Secondary use of samples and data Privacy and data protection of 208

Taiwan Biobank Target: 200,000 samples (out of 23 millions), a population-based large cohort study Sample Collected from 2009 (now about 9, ,000 samples) Sampling: “Taiwanese” includes Hoklo (70%), Hakka (15%), Mainlanders (13%), Taiwanese Aborigines (2%) of 209

Taiwan Biobank BioMed Technology Island Plan (2004) National Health Insurance Scheme (99%: compulsory enrolment) Household Registration Database Developmental State of 2010

Health + Wealth The Role of the State: Dual Globally: market player vs Locally: health guardian Ethical Controversies Trust of 2011

Taiwan Biobank Dual Governance Frameworks IRB + EGC Taiwan Biobank Management Act, 2010 of 2012

Consent Broad Consent Group consent for Taiwanese Aborigines How to define “group”? Representative Issue Indigenous Basic Law of 2013

of 2014

Secondary Use From biobank to “big data” Taiwan Health Cloud Project ( ) Extension of biobank research? Re-consent? of 2015

From Biobank to “Big Data” Data Linkage (disk --> VPN) Cloud Computing Safe Harbour vs Consent ? of 2016

From Biobank to “Big Data” Data Sharing International Harmonisation of Rules Accountability Opt-Out option of 2017

A Comparative Perspective Icelandic Health Sector Database (HSD): exclusive license to deCODE (commercial) UK Biobank (public, common good) Taiwan Biobank ? of 2018

“Translation” Legal aspect: a dialogue between global and local rules Neither top-down, nor bottom-up A process of negotiation btw different levels of authorities and different agencies of 2019

Thank you for your attention of 2020