Page 165 - ITU KALEIDOSCOPE, ATLANTA 2019

OPERATIONALIZING DATA JUSTICE IN HEALTH INFORMATICS

Mamello Thinyane

United Nations University Institute on Computing and Society, Macau SAR, China

ABSTRACT developments are also increasingly being recognized and
understood: growing inequality, new forms of
There is a growing awareness of the need and increasing marginalization and exclusion, digital waste, disruptions and
demands for technology to embed, be sensitive to, be decimation of norms.
informed by, and to be a conduit of societal values and
ethical principles. Besides the normative frameworks, such This potential of the 4IR to have adverse developmental
as the Human Rights principles, being used to inform impacts is giving motivation and impetus to global efforts
technology developments, numerous stakeholders are also towards ensuring that the outcomes of the use of technology
developing ethical guidelines and principles to inform their in society are consistent with our values, goals and desired
technology solutions across various domains, particularly futures. These efforts are advancing at many levels (e.g.
around the use of frontier technologies such as artificial organization, national, global) and from various fronts (e.g.
intelligence, machine learning, Internet of things, robotics legal, technological, educational, standards). For example,
and big data. Digital health is one of the domains where the legal stipulations such as the General Data Protection
convergence of technology and health stands to have a Regulation (GDPR), the Health Insurance Portability and
significant impact on advancing sustainable development Accountability Act (HIPAA), and the Protection of Personal
imperatives, specifically around health and wellbeing (i.e. Information Act (POPIA) are in place to protect and guide
SDG3). As far as digital health is concerned, what values the use of data. Ethics frameworks such as Ethical OS, Data
and ethical principles should inform solutions in this domain, Ethics Framework, and Asilomar AI principles, are being
and more significantly, how should these be translated and formulated to inform technology solutions and use. At the
embedded into specific technology solutions? This paper standards level, examples include the ISO/IEC 29100:2011
explores the notion of data justice in the context of health “Information technology, security techniques, privacy
informatics and outlines the key considerations for data framework” standard on privacy protection of personally
collection, processing, use, sharing and exchange towards identifiable information (PII), as well as the work from the
health outcomes and impact. Further, the paper explores the International Telecommunication Union (ITU) Focus Group
operationalization of Mortier et al.’s Human-Data on Data Processing and Management (FG-DPM) within
Interaction principles of legibility, agency and negotiability Working Group 3 on “Data sharing, interoperability and
through a health informatics system architecture. blockchain” as well as Working Group 4 on “Security,
privacy and trust including Governance”. At the global level,
Keywords – data justice, human-data interaction, personal normative frameworks such as the Human Rights principles,
health informatics provide high-level guidelines that could be operationalized
in the development of technology solutions across various
1. INTRODUCTION domains. One such domain that is being transformed by the
recent information and communication technology
The fourth industrial revolution (4IR) is set to transform developments is health. Digital health is not only improving
society in many fundamentally deep and broad ways. Unlike health service delivery, it is also introducing new
the previous industrial revolutions, the impact of the 4IR technologies and solutions towards universal health
stands to be unprecedented due to the velocity, scope and coverage and global health and wellbeing goals [3].
system impacts of the technological developments [1]. Some
of the ensuing and anticipated technological developments This research explores the use of data within the digital
are set to have fundamental and existential impacts on our health domain, highlighting the pathways from data to health
lives, for example, the societal evolution towards the outcomes and impacts, the key challenges and risks
infosphere [2], human augmentation through biotechnology, associated with the use of personal health data, as well as an
and the pervasiveness of robotics, autonomous computing overview of data justice principles and their application in
and artificial intelligence (AI). The potential of the 4IR, like digital health. The discussions in this paper are supported
other technological developments before, to contribute to and augmented with the findings from a survey that was
advancing sustainable development imperatives is broadly undertaken in pursuit of two lines of inquiry, firstly, to
recognized, e.g. supporting innovation, improving understand individuals’ use of personal health informatics,
efficiencies and enhancing livelihoods. However, the in particular, their motivations for data collection and
challenges and risks presented by these technological monitoring, as well as their current practice around health

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