The Googlization of Health Research: From Disruptive Innovation to Disruptive Ethics

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.

Keywords::

• 23andMe
• Baseline Study
• big data
• data-intensive medicine
• ethical issues
• Google Genomics
• health apps
• privacy
• ResearchKit

Acknowledgements

The author wishes to thank members of the Data & IT in Health & Medicine Lab, in particular B Prainsack, L Del Savio, F Lucivero, N Purtova, R Smith and M Turrini, for insightful discussions in the preparation of this article. The author also extend thanks to the three anonymous reviewers who provided useful comments and suggestions for improving the manuscript and thinking further.

Financial & competing interests disclosures

Support for preparation of this article was provided by The Netherlands Organization for Scientific Research (NWO), Grant No. 275-20-050, and the Edmond Hustinx Foundation. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Additional information

Funding

Support for preparation of this article was provided by The Netherlands Organization for Scientific Research (NWO), Grant No. 275-20-050, and the Edmond Hustinx Foundation. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.