Dynamic consent as a privacy control mechanism to engage research participants.

Lead Research Organisation: University of Oxford
Department Name: Computer Science

Abstract

Peoples' perception of researchers and other public bodies is important because it directly impacts whether or not they place trust in those institutions. Security is important but obscure to a lot of people. Even if they want to be secure they are often not sure of what is involved and it is difficult to find trustworthy expertise. If people found public bodies trustworthy they might be more likely to take advice from and want to contribute to them.

When the NHS tried to roll out care.data there was a distinct lack of engagement, both with the public and with credible experts who would reassure the public that the scheme was in their interests. This work is exploring the impact of communication (around how an individual's data is handled) on trust. I hope to show that clear communication makes research more accessible and easier for the public to engage with.

This research comes under the EPSRC Cyber Security research theme

Planned Impact

It is part of the nature of Cyber Security - and a key reason for the urgency in developing new research approaches - that it now is a concern of every section of society, and so the successful CDT will have a very broad impact indeed. We will ensure impact for:

* The IT industry; vendors of hardware and software, and within this the IT Security industry;

* High value/high assurance sectors such as banking, bio-medical domains, and critical infrastructure, and more generally the CISO community across many industries;

* The mobile systems community, mobile service providers, handset and platform manufacturers, those developing the technologies of the internet of things, and smart cities;

* Defence sector, MoD/DSTL in particular, defence contractors, and the intelligence community;

* The public sector more generally, in its own activities and in increasingly important electronic engagement with the citizen;

* The not-for-profit sector, education, charities, and NGOs - many of whom work in highly contended contexts, but do not always have access to high-grade cyber defensive skills.

Impact in each of these will be achieved in fresh elaborations of threat and risk models; by developing new fundamental design approaches; through new methods of evaluation, incorporating usability criteria, privacy, and other societal concerns; and by developing prototype and proof-of-concept solutions exhibiting these characteristics. These impacts will retain focus through the way that the educational and research programme is structured - so that the academic and theoretical components are directed towards practical and anticipated problems motivated by the sectors listed here.

Publications

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Studentship Projects

Project Reference Relationship Related To Start End Student Name
EP/P00881X/1 01/10/2016 31/03/2023
1813679 Studentship EP/P00881X/1 01/10/2016 23/04/2021 Arianna Schuler Scott
 
Description An Exploration of Dynamic Consent 
Organisation University of Oxford
Department Rare and Undiagnosed Diseases Study (RUDY)
Country United Kingdom 
Sector Academic/University 
PI Contribution As a DPhil candidate I am carrying out research. I explore dynamic consent and the RUDY study are a study of rare diseases that happens to be implementing dynamic consent mechanisms as described by existing literature. I interviewed study participants to gather an understanding of how they experienced the project and I interviewed the study team to gather an understanding of what the research expectations were when developing these consent and engagement methods. Analysing this data will give me some idea of whether dynamic consent in practice matches the existing theory.
Collaborator Contribution The project granted me access (subject to ethical approval) to participants and the research team. The project manager and principal investigator met with me to talk about what I hoped to do and without this I would not have been able to gather data.
Impact Computer Science Ethics Governance Medical
Start Year 2018