| Part 1 - Lead Organizer |
| Contact Person |
| Ms. Kuan-Ju Chou |
| Email |
| Organization / Affiliation (Please state "Individual" if appropriate) * |
| Taiwan Association for Human Rights |
| Designation |
| Deputy Secretary-General |
| Gender |
| Female |
| Economy of Residence |
| Taiwan |
| Primary Stakeholder Group |
| Civil Society |
| Part 2 - Session Proposal |
| Session Title |
| Health Data Governance through AI Booming Age : A Journey in Taiwan |
| Session Format |
| Fireside Chat (30 minutes) |
| Where do you plan to organize your session? |
| Onsite at the venue (with online moderator for questions and comments from remote participants) |
| Specific Issues for Discussion |
| Intention in boosting the development of artificial intelligence and other emerging technologies accelerates the needs of personal data, while some controllers using no consents or vague purposes harm the trusts in the data ecosystem. Taiwan has faced the mandatory secondary use of health insurance data for more than a decade. In the fireside chat, Taiwan Association for Human Rights (TAHR) will share the experience in working with different stakeholders to file the constitutional litigation. The court’s decision released in 2022 set a minimum standard of opt-out rights and the regulation of massive personal databases. Technical and legal experts will be invited to discuss the sphere of public interests, pseudonymization and data subjects’ rights. |
| Describe the Relevance of Your Session to APrIGF |
| From medical treatments to daily app usage, health data is collected and depicts a portion of how a person might be. The discussion of AI and medical research ethics may not be sufficient for mitigating the harms toward data exploitation. To fill the gap for exercising data subjects rights and processing sensitive data in accountable ways, big players in governments and private sectors should include more voices from civil society. In 2024, several policy and legislation plans are ongoing, including the management of health insurance and social welfare data, the design of the future data protection authority and the revisement of the Personal Data Protection Act. We are gathering feedback and materials for preparing the next step of advocacy. |
| Methodology / Agenda (Please add rows by clicking "+" on the right) |
| Time frame (e.g. 5 minutes, 20 minutes, should add up to 60 minutes) |
Description |
|---|
| 8 minutes |
sharing the litigation outcomes and problems we are facing |
| 8 minutes |
technical/academia export sharing their experience |
| 14 minutes |
Feedback and Reflection from all participants / Response from speakers |
|
| Moderators & Speakers Info (Please complete where possible) |
Moderator (Primary)- Name: Kuan-Ju, Chou
- Organization: Taiwan Assocation for Human Rights (TAHR)
- Designation: Deputy Secretary-General
- Gender: female
- Economy / Country of Residence: Taiwan
- Stakeholder Group: Civil Society
- Expected Presence: In-person
- Status of Confirmation: Confirmed
- Link of Bio (URL only): https://www.tahr.org.tw/content/2438
Speaker 1- Name: Wang, Bow-Yaw
- Organization: Institute of Information Science, Academia Sinica
- Designation: Research Fellow/Professor
- Gender: male
- Economy / Country of Residence: Taiwan
- Stakeholder Group: Technical Community
- Expected Presence: In-person
- Status of Confirmation: Confirmed
Speaker 2- Name: Yu-Yin, Tu
- Organization: TAHR/Tam Kang University, Department of Public Administration
- Designation: Chairperson/Associate Professor
- Gender: male
- Economy / Country of Residence: Taiwan
- Stakeholder Group: Academia
- Expected Presence: In-person
- Status of Confirmation: Confirmed
|
| Please explain the rationale for choosing each of the above contributors to the session. |
| The moderator will be a TAHR staff or member, which run the National Health Insurance database litigation and relevant privacy and internet freedom. |
| Please declare if you have any potential conflict of interest with the Program Committee 2024. |
| No |
| Are you or other session contributors planning to apply for the APrIGF Fellowship Program 2024? |
| No |
| Brief Summary of Your Session |
| Recently the Taiwanese government declared to develop risk assessment AI on diabetes with Google, however the speakers remind that the Taiwanese government has not yet established the legal framework on health data governance to respect data subjects’ rights. Speakers introduce the decision of the Taiwanese Constitutional Court about a case on secondary use of national health insurance data, and point out the flaws in the Personal Data Protection Act. Speakers discuss a draft of bill to regulate secondary use of health insurance and social welfare data, and emphasize the tendency of using secondary use to override the principle of specific purpose and data subjects’ true consent. Privacy and data autonomy were eroded by covering commercial benefits into public interests to skip the engagement and determination from data subjects. It is feasible nowadays to use technology to let people get back their autonomy to control their own data. |
| Substantive Summary of the Key Issues Raised and the Discussion |
| Medical and health data retention issues |
| Conclusions and Suggestions of Way Forward |
-Respect the data subjects’ informed consent.
-Use technology to improve the implementation and exercise of information autonomy (data subjects can control their personal data). |
| Number of Attendees (Please fill in numbers) |
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| Gender Balance in Moderators/Speakers (Please fill in numbers) |
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| Consent |
 I agree that my data can be submitted to forms.for.asia and processed by APrIGF organizers for the program selection of APrIGF 2024. |