Page 107 - ITU Journal - ICT Discoveries - Volume 1, No. 2, December 2018 - Second special issue on Data for Good

ITU JOURNAL: ICT Discoveries, Vol. 1(2), December 2018

United States and beyond. Data sovereignty, on the order to stratify and tailor services towards the
other hand, takes as a starting point the social and individual. In these contexts, and especially in cases
collective setting in which individual claims are of rare disease, a patient’s decision to share her data
being articulated, recognized, and respected. directly affects the clinical prospects of others. With
Privacy understood as contextual integrity [16], the emergence of artificial intelligence in the clinic,
where the appropriateness of information flows patient data is being used to learn neural networks
turns on context-relative expectations and norms designed to improve quality, speed, and resource
governing access, is mindful of the social efficiency of clinical decision making and
embeddedness of privacy claims. But unlike data treatments, e.g., on personalized cancer therapy
sovereignty, it appears to leave positive [18]. With the rollout of electronic health records,
entitlements to share information unarticulated. sharing one’s personal health data has become
easier than ever.
Two examples illustrate that such entitlements are
vital. First, our lifeworlds are increasingly digitized In this context, we can also mention the increasingly
and mediated by data. Floridi and others [17] use popular concept of a learning healthcare system [19]
the term onlife to capture the intertwining, fusion which seeks to embed knowledge generation into
and indivisibility between our analogue, offline clinical care, including the systematic consideration
lives and our ICT-driven activities and self- of routine clinical data in evidence bases and
understandings. While privacy protects individuals research processes. Some authors see an
against misuse of their data, Floridi argues that its “obligation of patients to contribute to the common
primary importance flows from our status as purpose of improving the quality and value of
“informational organisms (inforgs), mutually clinical care and the health care system” [20].
connected and embedded in an informational
environment (the infosphere)” [11]. Because of the If one prefers to be more careful [21] with regards
significance of information for the self-constitution to a duty to participate in endeavors of this kind,
of inforgs, privacy breaches infringe upon their one fruitful avenue is to examine the range of
identity. This is what Floridi suggests constitutes attitudes and dispositions which subjects bring to
the distinctive wrongness of such breaches. the table all along. Gift theorists maintain that
certain acts of giving are fully understood only if we
Still, violating privacy is just one way of wronging recognize their aneconomic aspects: These acts
inforgs. Compatible with and arguably inherent to involve a sense of endowment, are being carried out
the proposed picture is that the integrity of inforgs without the intention to prompt a return, transcend
requires not only protections but also entitlements. the individual’s self-interest, and convey a symbolic,
Privacy protects a deeply personal sphere, but the non-commodifiable aspect that encodes the donor’s
personality and identity residing in this sphere is dedication and investment of a part of herself into
itself constituted by informational ties and relations what she is giving [22–24]. In these ways, gifts
to others. It is the sharing, not the retention of present elements of recognition that cannot be
information that constitutes identities in the first offset against other things and introduce these
place. Inforgs conceive of themselves and elements into interactions that otherwise would be
re-identify as well as recognize each other on the guided primarily by a logic of economic exchange.
basis of information flows which catalyze social
bonds that are constitutive of a fulfilled life. Indeed, Health-related acts of giving impact the recipient in
intimacy and closeness are paradigmatically located an immediate and bodily way, and the donation of
in areas where informational friction is suspended in personal health data is no exception. For example,
the right ways. As Floridi illustrates, upon returning genomic data is highly intimate and essentially
to Ithaca, Odysseus is recognized by his wife personalized, yet some individuals obtain their
Penelope on the basis of his knowledge of genomic data from direct-to-consumer genetic
information that only the two of them have in testing and proceed to share it with researchers and
common. even the public domain. Empirical evidence on the
motivation of these individuals suggests that they
Second, sharing data is vital in many contexts where are aware of looming privacy risks, but besides
we hope to enjoy the benefits of state-of-the-art curiosity and the desire to learn more about their
technology. For example, personalized medicine genomes, the sharing is driven by the intention to
requires the availability of large amounts of data in contribute to medical research and to improve

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