期刊
PERSONALIZED MEDICINE
卷 13, 期 6, 页码 563-574出版社
FUTURE MEDICINE LTD
DOI: 10.2217/pme-2016-0057
关键词
23andMe; Baseline Study; big data; data-intensive medicine; ethical issues; Google Genomics; health apps; privacy; ResearchKit
资金
- Netherlands Organization for Scientific Research (NWO) [275-20-050]
- Edmond Hustinx Foundation
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.
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