HBP Ethics Support team members George Ogoh and Damian Eke at the MozFest

George Ogoh

The theme of the Mozila Festival (MozFest) for 2019 was ‘Healthy AI’. MozFest is an eventful gathering of people interested in discussing topics related to a healthier internet. This year was the 10th anniversary and the events took place in London from 21 to 27 October 2019.

The theme of ‘healthy AI’ was chosen to highlight the ways algorithms embedded in emerging and familiar technologies are making decisions for us. It enabled the evaluation of AI advances and aimed to encourage brainstorming on ‘ways to bring more social responsibility, ethics, and user agency to AI’. It was therefore unsurprising to see a good number of presentations on artificial intelligence being facilitated at the event. Examples include a talk on AI and Ethics by Cansu Canca, and another on Trustworthy AI: Imagining Better Machine Decision Making by Irini Mirena.


Sharing health data responsibly

As data is at the heart of artificial intelligence, it was interesting to see that issues around data governance featured quite prominently at the event, especially on day 6. One such session was titled ‘Health Data Sharing is Caring’. This very interactive session began by drawing on the blue pill-red pill metaphor of the Metrix movie to illustrate issues around machine learning and data sharing. Recall that in the Matrix, Morpheus (leader of the resistance against AI) held out two pills (a red and a blue one) to Neo, a computer programmer. Taking the red pill will enable Neo to join the AI resistance, but with the blue pill, Neo will to return to blissful ignorance about issues promoted by AI.

An important point made by drawing on this metaphor was how technology could very easily dominate the people for whom it was made. While so much good may be drawn from sharing health data, some concerns have also been raised. Using the blue pill-red pill analogy, it was pointed out that “AI has introduced the possibility of using healthcare data to produce powerful models that can automate diagnosis” (Blue Pill); and yet “scientists often lack access to balanced datasets needed to optimally train algorithms and avoid replicating bias” (Red Pill).

In light of such issues, one of the session participants pointed out that “responsible data governance is needed” similar to the HBP’s Ethics Support team’s proposal for a responsible data governance of big neuroscience data. Another participant explained the concept of responsible research and innovation (RRI) to the group sparking a vibrant discussion around the RRI framework approaches. Since 2011 this approach has been promoted by major research funding bodies (e.g. the European Commission’s Horizon 2020 and the UK’s Engineering and Physical Science Research Council – EPSRC). Following these conversations, the facilitators of this session have begun seriously considering RRI as a suitable approach to healthcare data management.


Data trusts

The idea of data trusts and data unions was also discussed at the event. At one session titled ‘From data serfs to empowered citizens: the need for data trusts’ it was suggested that data trusts could give ordinary citizens greater control over how personal data is collected and used while also allowing everyone to share in the value created from their personal data. Current business models usually mean that only organisations derive value from sharing or sale of personal data. However, data trusts could reverse this trend and enable individuals to derive greater value from their personal data.     

A model was suggested where data trusts are controlled by a trustee that holds fiduciary obligations and manages data according to terms of a trust. This means that when data is assigned to the trust, the trustee cannot act according to their interests but must base their actions on the interests of data subjects. The trustee negotiates terms of access to data on behalf of those who have provided their data with shorter, clearer terms that enhances informed consent. In this model, data trusts leverage collective action and enable people to re-balance the power dynamics between huge multinationals and ordinary citizens.

Although ideas around data trusts are not entirely new, it has been pointed out that the concept is still in its infancy (Kemp, 2019; Kirkwood, 2019). Yet, data trusts are increasingly being seen as a way of unlocking the value of data while preventing harmful impacts. Another session that helped to reinforce this was titled ‘Approaches to Data Governance’. During this session, it was argued that there was need for governance systems like data trust because they are easily able provide a clear definition of limits, rely on a blend of legal rights, and create legally enforceable fiduciary duties.


Protecting children online

The importance of protecting children online cannot be overemphasised. One interesting session that took on this topic was titled ‘Privacy, Ethics & Security Framework for Children’s Data’. During this highly interactive session, participants were urged to discuss key challenges they observed with children’s data and to propose possible solutions. Among other things, participants suggested they were concerned about issues around control and ownership of children’s personal data, protection of children’s privacy, and how to obtain truly informed consent when collecting and sharing children’s data. Some solutions they suggested include creating a framework for privacy by default which for example, allows people to opt out of data sharing and processing by default, greater transparency for algorithms used in children’s software, greater fines for negligence by companies, and simple quizzes to ensure that the individual thinks about decisions being made when giving consent.

Overall, MozFest 2019 was an interesting event that provided an opportunity for discussion and reflection on societal concerns for AI, as well as issues around and data governance and social responsibility when dealing personal data. It is interesting to see that Mozilla has embraced the idea of data trusts and is building a tool for ethical governance of AI through data trusts. However, like Croft (2019) points out, there remain questions that still need to be answered about the legal structure that data trusts would hold.



Croft, J. (2019) Data trusts raise questions on privacy and governance. [Online] Financial Times. Available from: https://www.ft.com/content/a683b8e4-a3ef-11e9-a282-2df48f366f7d [Accessed 03/12/19].

Kemp, R. (2019) Data trusts and frameworks are gaining traction and on the cusp of widespread adoption. [Online] IT Talk at the Apex. Available from:

Data trusts and frameworks are gaining traction and on the cusp of widespread adoption
[Accessed 03/12/19].

Kirkwood, I. (2019) Element AI partners with Mozilla on R&D for data trusts, ethical AI projects. [Online] BetaKit. Available from:

Element AI partners with Mozilla on R&D for data trusts, ethical AI projects
[Accessed 03/12/19].

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