Digital Ethics for Health Data

Drawing together innovative methodologies from participatory design (Citizen Science and Living Labs) to co-create data to inform the development of ethical guidance.

Participation in health data through collection (curation), uploading medical records to seek crowdsourced cures (customisation), and self-tracking and analysis (consumption) are occurring in unprecedented ways - but ethical guidance lags behind.

Why do we need guidance on the three C's - curation, customisation and consumption of health data?

Participation in health care is occurring in new and unprecedented ways. People currently use one or more of 160 000 available health and medical apps, or wear one of the 485 billion wearable devices or, they are one of the two in 3 people who have a social media account in online health communities. Most Australians spend almost one day per week online, by 2017 90% of Australians were anticipated to be connected, and by 2019 most households will have an average of 24 devices connected. Coupled with the capacity to self-monitor, track and crowdsource health information, the public has a greater capacity to be designers (curators and customisers) of their own health data and care; there has been an identifiable shift from consumer to coproducer.

Participatory health reflects the new health paradigm. It’s premised on co-production, use of technology and digital health information in new and varied ways; and unsurprisingly brings with it new ethical risks. A distinguishing feature of this participatory paradigm is the way that individuals can generate and share vast amounts of data. Currently, though, health data collected in the primary health setting in particular largely remains an untapped resource. Despite having a technology by which researchers can curate health information in a de-identified way that builds a repository whereby close examination of patient conditions, outcomes and improvements for care delivery are possible, we have not made as much progress as we could have. A substantive limitation is the limited ethical and legal examination of the salient concerns from those most impacted on: healthcare professionals and patients.

Ethical debate to date has mostly centred on: promotion or erosion of autonomy (through data control, movement to commercial entities without knowledge or consent), privacy, consent, ownership, rights to use and anonymity, and potential for stigma with aggregated data making societal groups identifiable by the potential to link them with negative behaviours. The potential for government to reward those who take responsibility for their health which may lead to the exclusion of others more vulnerable. Other unintended consequences include: data collection seen as a tool for monitoring and surveillance; questions around duty of care, accountability, trustworthiness and legitimacy of evidence. Our participatory design project will address these critical questions.

This project draws together two innovative methodologies from participatory design (Citizen Science and Living Labs) to co-create data to inform the development of ethical guidance. The final outcome will be a position paper for the Network Society Institute on the ethics of data curation, customisation and consumption. The paper will be informed by a literature review, expert consultation but the participatory designed solutions will be at the heart.

Research Team

PhD Students

Timothy Kariotis, Melbourne Medical School, University of Melbourne

External Collaborators

Roland Maxwell, Boojum Consulting

Prof Deborah Lupton, Faculty of Arts and Design, University of Canberra

Prof Kimberlyn McGrail, Faculty of Population Health, University of British Columbia


Seed Funding 2018

Downside of fitness trackers and health apps is loss of privacy, by Victoria Palmer, The Conversation, 23 December 2016.