Journal of Law, Medicine and Ethics 48 (S1):154-158 (2020)
Abstract |
This article examines the privacy and security issues associated with mobile application-mediated health research, concentrating in particular on research conducted or participated in by independent scientists, citizen scientists, and patient researchers. Building on other articles in this issue that examine state research laws and state data protection laws as possible sources of privacy and security protections for mobile research participants, this article focuses on the lack of application of federal standards to mobile application-mediated health research. As discussed in more detail below, the voluminous and diverse data collected by some independent scientists who use mobile applications to conduct health research may be at risk for unregulated privacy and security breaches, leading to dignitary, psychological, and economic harms for which participants have few legally enforceable rights or remedies under current federal law. Federal lawmakers may wish to consider enacting new legislation that would require otherwise unregulated health data holders to implement reasonable data privacy, security, and breach notification measures.
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DOI | 10.1177/1073110520917041 |
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References found in this work BETA
Unregulated Health Research Using Mobile Devices: Ethical Considerations and Policy Recommendations.Mark A. Rothstein, John T. Wilbanks, Laura M. Beskow, Kathleen M. Brelsford, Kyle B. Brothers, Megan Doerr, Barbara J. Evans, Catherine M. Hammack-Aviran, Michelle L. McGowan & Stacey A. Tovino - 2020 - Journal of Law, Medicine and Ethics 48 (S1):196-226.
Citizen Science on Your Smartphone: An ELSI Research Agenda.Mark A. Rothstein, John T. Wilbanks & Kyle B. Brothers - 2015 - Journal of Law, Medicine and Ethics 43 (4):897-903.
California Takes the Lead on Data Privacy Law.Mark A. Rothstein & Stacey A. Tovino - 2019 - Hastings Center Report 49 (5):4-5.
Ethical Issues in Big Data Health Research: Currents in Contemporary Bioethics.Mark A. Rothstein - 2015 - Journal of Law, Medicine and Ethics 43 (2):425-429.
Currents in Contemporary Ethics: Improve Privacy in Research by Eliminating Informed Consent? IOM Report Misses the Mark.Mark A. Rothstein - 2009 - Journal of Law, Medicine and Ethics 37 (3):507-512.
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Citations of this work BETA
Privacy and Security Issues with Mobile Health Research Applications.Stacey A. Tovino - 2020 - Journal of Law, Medicine and Ethics 48 (S1):154-158.
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