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The Googlization of health research: from disruptive innovation to disruptive ethics
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It is argued that questions concerning the quality of research; privacy/informed consent; and new power asymmetries based on access to data and control over technological infrastructures deserves more critical attention.Abstract:
Consumer-oriented mobile technologies offer new ways of capturing multidimensional health data, and are increasingly seen as facilitators of medical research. This has opened the way for large consumer tech companies, like Apple, Google, Amazon and Facebook, to enter the space of health research, offering new methods for collecting, storing and analyzing health data. While these developments are often portrayed as ‘disrupting’ research in beneficial ways, they also raise many ethical issues. These can be organized into three clusters: questions concerning the quality of research; privacy/informed consent; and new power asymmetries based on access to data and control over technological infrastructures. I argue that this last cluster, insofar as it may affect future research agendas, deserves more critical attention.read more
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The Datafication of Health
TL;DR: This review examines how scholars in anthropology, sociology, science and technology studies, and media and communication studies have begun to explore the datafication of clinical and self-care practices, identifying the dominant themes and questions, methodological approaches, and analytical resources of this emerging literature.
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The transparent self
TL;DR: It is argued that while self-tracking may sometimes prove to be an adequate method to shed light on particular aspects of oneself and can be used to strengthen one’s autonomy, self- tracking technologies often cancel out these benefits by exposing too much about oneself to an unspecified audience, thus undermining the informational privacy boundaries necessary for living an autonomous life.
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Blind-sided by privacy? Digital contact tracing, the Apple/Google API and big tech's newfound role as global health policy makers.
TL;DR: The Apple/Google API is proposed to view in terms of a broader phenomenon whereby tech corporations are encroaching into ever new spheres of social life, and its centrality in the debate on digital contact tracing may blind us to these broader societal harms and unwittingly pave the way for ever more sphere transgressions.
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The digital transformation of the healthcare industry: exploring the rise of emerging platform ecosystems and their influence on the role of patients
TL;DR: The digital transformation of the healthcare industry is investigated by analyzing 1830 healthcare organizations found on Crunchbase and demonstrating 8 new roles within healthcare, namely: information platforms, data collection technology, market intermediaries, services for remote and on-demand healthcare, augmented and virtual reality provider, blockchain-based PHR, cloud service provider, and intelligent data analysis for healthcare provider.
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When digital health meets digital capitalism, how many common goods are at stake?:
TL;DR: In recent years, all major consumer technology corporations have moved into the domain of health research as discussed by the authors, and this "Googlization of Health Research" (GHR) begs the question of how the common good wi...
References
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Journal ArticleDOI
Critical questions for big data
danah boyd,Kate Crawford +1 more
TL;DR: The era of Big Data has begun as discussed by the authors, where diverse groups argue about the potential benefits and costs of analyzing genetic sequences, social media interactions, health records, phone logs, government records, and other digital traces left by people.
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Big Data, new epistemologies and paradigm shifts:
TL;DR: The authors examines how the availability of Big Data, coupled with new data analytics, challenges established epistemologies across the sciences, social sciences and humanities, and assesses the extent to which they are engendering paradigm shifts across multiple disciplines.
Journal ArticleDOI
Identifying personal genomes by surname inference.
TL;DR: It is reported that surnames can be recovered from personal genomes by profiling short tandem repeats on the Y chromosome (Y-STRs) and querying recreational genetic genealogy databases and it is shown that a combination of a surname with other types of metadata, such as age and state, can be used to triangulate the identity of the target.
Fundamental Disruption in Big Data Science and Biological Discovery
TL;DR: In the long-term future, the quantified self may become additionally transformed into the extended exoself as data quantification and self-tracking enable the development of new sense capabilities that are not possible with ordinary senses.
Journal ArticleDOI
The Quantified Self: Fundamental Disruption in Big Data Science and Biological Discovery
TL;DR: A key contemporary trend emerging in big data science is the quantified self (QS) as mentioned in this paper, individuals engaged in the self-tracking of any kind of biological, physical, behavioral, or environmental information as n=1 individuals or in groups.