new models for individual control over uses of health data - effy vayena.pdf · 2017-01-17 ·...
TRANSCRIPT
![Page 1: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/1.jpg)
New models for individual control over uses of health data
Prof. Effy Vayena
Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention Institute
University of Zurich
![Page 2: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/2.jpg)
control
![Page 3: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/3.jpg)
Central role of the individual in the big data ecosystem.
Key element of an ethical framework for big data uses.
Individual responsibility in big data.
Control and data ownership.
Vayena et. al(2016) Elements of a new ethical framework for Big Data research. Washington and Lee Law Review. . Vayena & Gasser. (2016) Strictly Biomedical ? Sketching the ethics of the big data ecosystem in Biomedicine.
![Page 4: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/4.jpg)
control
autonomy
privacy
transparency
trust
Accountability
Benefit sharing
Security
Caveat
![Page 5: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/5.jpg)
![Page 6: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/6.jpg)
• 69% of people say that their explicit approval should be required in all cases before their data is collected and processed.
• Roughly seven out of ten people are concerned about their information being used for a different purpose from the one it was collected for.
![Page 7: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/7.jpg)
![Page 8: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/8.jpg)
Enhancing individual control
USE Consent models Transaction models
ACCESS Regulatory moves
GOVERNANCE Participatory schemes
![Page 9: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/9.jpg)
USE Consent models Information tools
• Migration from paper to the digital
– eIC tools
– Online consent management
• Conceptual Shifts
– Participant-centered consent
– Dynamic consent
![Page 10: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/10.jpg)
![Page 11: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/11.jpg)
![Page 12: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/12.jpg)
Dynamic consent
https://www.hwcomms.com/DynamicConsent
![Page 13: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/13.jpg)
"We are actually considering a credit system whereby individuals, their communities, and our platform could all have a ‘credit’ in a system of commerce”. Comments by Sharon Terry
- “Blockchain” technology
https://www.fastcompany.com/3057732/should-you-get-paid-for-your-dna
USE Transaction architecture
![Page 14: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/14.jpg)
General Data Protection Regulation
Article 20. Data portability right
“[the] data subject shall have the right to receive the personal data concerning him or her, which he or she has provided to a controller, in a structured, commonly used and machine-readable format and have the right to transmit those data to another controller without hindrance from the controller to which the personal data have been provided”.
ACCESS Data portability right
![Page 15: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/15.jpg)
![Page 16: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/16.jpg)
![Page 17: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/17.jpg)
Augmented role of individuals
– Cooperative model
GOVERNANCE Participatory schemes
![Page 18: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/18.jpg)
midata
Slide by Prof. Ernst Hafen, used with permission
![Page 19: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/19.jpg)
Synergy?
Consent models Transaction aarchitectures
Data portability right
USE
ACCESS
GOVERNANCE Participatory schemes
![Page 20: New models for individual control over uses of health data - Effy Vayena.pdf · 2017-01-17 · Prof. Effy Vayena Health Ethics and Policy Lab, Epidemiology Biostatistics & Prevention](https://reader033.vdocument.in/reader033/viewer/2022042612/5f484f86796098406229b44f/html5/thumbnails/20.jpg)
• Trend towards more individual control (not just in rhetoric)
• Innovative models face challenges
• More synergy in innovation around control could
be more effective
• Meaningful individual control will be crucial for mhealth