The individual right of access to one’s own data is a crucial privacy protection long recognized in U.S. federal privacy laws. Mobile health devices and research software used in citizen science often fall outside the HIPAA Privacy Rule, leaving participants without HIPAA’s right of access to one’s own data. Absent state laws requiring access, the law of contract, as reflected in end-user agreements and terms of service, governs individuals’ ability to find out how much data is being stored and how it might be shared with third parties. Efforts to address this problem by establishing norms of individual access to data from mobile health research unfortunately can run afoul of the FDA’s investigational device exemption requirements.
Keywords No keywords specified (fix it)
Categories (categorize this paper)
DOI 10.1177/1073110520917031
Edit this record
Mark as duplicate
Export citation
Find it on Scholar
Request removal from index
Revision history

Download options

PhilArchive copy

Upload a copy of this paper     Check publisher's policy     Papers currently archived: 56,016
External links

Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
Through your library

References found in this work BETA

Add more references

Citations of this work BETA

Add more citations

Similar books and articles

Privacy and Security Issues with Mobile Health Research Applications.Stacey A. Tovino - 2020 - Journal of Law, Medicine and Ethics 48 (S1):154-158.
Privacy and Ethics in Brain-Computer Interface Research.Eran Klein & Alan Rubel - 2018 - In Chang S. Nam, Anton Nijholt & Fabien Lotte (eds.), Brain–Computer Interfaces Handbook: Technological and Theoretical Advances. Boca Raton, FL, USA: pp. 653-655.
Data Science and Designing for Privacy.Michael Falgoust - 2016 - Techné: Research in Philosophy and Technology 20 (1):51-68.
Biobank Research and the Right to Privacy.Lars Øystein Ursin - 2008 - Theoretical Medicine and Bioethics 29 (4):267-285.
Protecting Health Privacy Even When Privacy is Lost.T. J. Kasperbauer - 2020 - Journal of Medical Ethics 46 (11):768-772.
Privacy Exchanges: Restoring Consent in Privacy Self-Management.Mario Pascalev - 2017 - Ethics and Information Technology 19 (1):39-48.
Informational Privacy, Data Mining, and the Internet.Herman T. Tavani - 1999 - Ethics and Information Technology 1 (2):137-145.
Ethical Protocols Design.Matteo Turilli - 2007 - Ethics and Information Technology 9 (1):49-62.
Do Groups Have Moral Standing in Unregulated mHealth Research?Joon-Ho Yu & Eric Juengst - 2020 - Journal of Law, Medicine and Ethics 48 (S1):122-128.
Privacy and Occupational Health Services.A. Heikkinen - 2006 - Journal of Medical Ethics 32 (9):522-525.


Added to PP index

Total views
3 ( #1,279,469 of 2,403,592 )

Recent downloads (6 months)
3 ( #256,265 of 2,403,592 )

How can I increase my downloads?


My notes