Hello and welcome to this presentation on “Assessing MyData Scenarios:
Ethics, Concerns, and the Promise”. I am Andy Alorwu from the Center
for Ubiquitous Computing at the University of Oulu in Finland.
Humans generate vast amounts of data about themselves everyday through various means.
Health, financial, media, and location data,
are just a few of the personal data we produce on a daily basis.
Considering how delicate personal data is, we talk in the context of MyData, a data management vision
and set of principles that seeks to transform the organisation-centric view of data to a more
human-centric view by positing the individual as the controller of the generated data.
Within the health domain, MyData is seen as an ideal, even somewhat optimistic model, that would
allow the data creator to be the controller of the data that is largely managed by big corporations.
Our goal is to understand the perspectives of data creators
on issues of personal data management and use by third-parties, as well as
the ethical dimension and felt-concern of diverse data management practices.
With ethical issues about data mainly related to data collected about people,
We centre this research around MyData,
a data management vision that is yet to catch the attention of the CHI community.
Our research study was conducted in two stages:
In stage 1, we crowdsourced ethical assessments and felt-concern of scenarios
related to various data management practices using a custom-built tool.
172 people participated in this study yielding 1920 assessments.
We conducted a complementary study, inviting participants from the initial study to collect
demographic and qualitative insights on MyData. Of the 172 invited participants, 129 responded
with a mean age of 32.7. Participants came from diverse academic backgrounds and nationalities.
Here, is the tool we designed to assess the ethicality of various data management scenarios.
The tool as seen has 5 sections:
We first provide participants with definitions of the terms
used in the scenarios such as MyData and the MyData broker.
Then, we present them with a task description, to give them an idea of what is required of them.
Next, we present the scenario outline and the various scenario parameters.
Last is the response section where participants provide their responses
to questions on ethicality, felt-concern, and choice of ethicality for each given scenario.
So, what at all is a scenario?
A scenario is a depiction of how one’s personal data is treated and acted upon by a broker
and other third parties.
Each scenario has 4 building blocks: the broker action, the data type, the purpose,
and why did it happen.
Each building block has two or more levels, resulting in a total of 96
different unique scenarios
Here is a sample scenario: The MyData operator has shared your
MyData with a third party without getting paid for it. This data includes your diagnostic and medical
data. Your MyData is used by a for-profit company to build a proprietary commercial solution.
The action was taken against your consent, i.e. you did not agree to this happening.
After reading this scenario, participants went ahead to evaluate the ethicality, the
felt-concern, and also identify which parameters most affected their choice of ethicality.
It was interesting to find out that conducts people considered unethical was not necessarily
a concern for them. As a result, ethicality and felt-concern were largely decoupled.
Data type also stood out as the most decisive parameter in the choice of ethicality of a
given scenario. This was followed by the broker action, purpose, and lastly why did it happen.
We noticed that managing consent the right way, significantly decreased user concern.
However, to our surprise, as may be the case for you as well,
we noticed that consent forms are not as important to users as we think.
Our qualitative analysis yielded some findings as well.
The prospect of being in control of one’s personal data and deciding whom to share
it with was exciting for participants, particularly when it concerned health data.
Participants expressed concern about current privacy issues and
who would be considered a worthy custodian of their personal data.
For initiatives such a MyData to be successful,
trust is an important element that must be shown at all levels of the data management chain.
Thank you for your time. Do well to email me if you’d like to collaborate on future projects.
I am Andy Alorwu. Thank you.