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

control

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.

control

autonomy

privacy

transparency

trust

Accountability

Benefit sharing

Security

Caveat

• 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.

Enhancing individual control

USE Consent models Transaction models

ACCESS Regulatory moves

GOVERNANCE Participatory schemes

USE Consent models Information tools

• Migration from paper to the digital

– eIC tools

– Online consent management

• Conceptual Shifts

– Participant-centered consent

– Dynamic consent

Dynamic consent

https://www.hwcomms.com/DynamicConsent

"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

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

Augmented role of individuals

– Cooperative model

GOVERNANCE Participatory schemes

midata

Slide by Prof. Ernst Hafen, used with permission

Synergy?

Consent models Transaction aarchitectures

Data portability right

USE

ACCESS

GOVERNANCE Participatory schemes

• 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