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  1. Privacy and Security Issues with Mobile Health Research Applications.Stacey A. Tovino - 2020 - Journal of Law, Medicine and Ethics 48 (S1):154-158.
    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 (...)
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  • 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.
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  • Does Consent Bias Research?Mark A. Rothstein & Abigail B. Shoben - 2013 - American Journal of Bioethics 13 (4):27 - 37.
    Researchers increasingly rely on large data sets of health information, often linked with biological specimens. In recent years, the argument has been made that obtaining informed consent for conducting records-based research is unduly burdensome and results in ?consent bias.? As a type of selection bias, consent bias is said to exist when the group giving researchers access to their data differs from the group denying access. Therefore, to promote socially beneficial research, it is argued that consent should be unnecessary. After (...)
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  • Health Information Technology and the Idea of Informed Consent.Melissa M. Goldstein - 2010 - Journal of Law, Medicine and Ethics 38 (1):27-35.
    During this early stage of HIT adoption, it is critical that we engage in discussions regarding informed consent's proper role in a health care environment in which electronic information sharing holds primary importance. This article discusses current implementation of the doctrine within health information exchange networks; the relationship between informed consent and privacy; the variety of ways that the concept is referenced in discussions of information sharing; and challenges that surround incorporation of the doctrine into the evolving HIT environment. The (...)
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  • Health Information Technology and the Idea of Informed Consent.Melissa M. Goldstein - 2010 - Journal of Law, Medicine and Ethics 38 (1):27-35.
    As policy makers place great hope in health information technology as a means to lower costs and achieve improvements in health care quality, safety, and efficiency, organizations at the forefront of building health information exchange networks attempt to weave the concept and function of informed consent into an evolving information-driven health care system. The vast amount of information that will become available to both health professionals and patients in the new HIT-driven environment can reasonably be expected to affect the relationship (...)
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  • The Physician-Patient Relationship and a National Health Information Network.Leslie Pickering Francis - 2010 - Journal of Law, Medicine and Ethics 38 (1):36-49.
    The growing use of interoperable electronic health records is likely to have significant effects on the physician-patient relationship. This relationship involves two-way trust: of the physician in patients, and of the patients in their providers. Interoperable records opens up this relationship to further view, with consequences that may both enhance and undermine trust. On the one hand, physicians may learn that information from their patients is — or is not — to be trusted. On the other hand, patients may learn (...)
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  • The Physician-Patient Relationship and a National Health Information Network.Leslie Pickering Francis - 2010 - Journal of Law, Medicine and Ethics 38 (1):36-49.
    The United States, like other countries facing rising health care costs, is pursuing a commitment to interoperable electronic health records. Electronic records, it is thought, have the potential to reduce the risks of error, improve care coordination, monitor care quality, enable patients to participate more fully in care management, and provide the data needed for research and surveillance. Interoperable electronic health records on a national scale — the ideal of a national health information network — seem likely to magnify these (...)
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  • Willingness to Share yet Maintain Influence: A Cross-Sectional Study on Attitudes in Sweden to the Use of Electronic Health Data.Sara Belfrage, Niels Lynöe & Gert Helgesson - 2021 - Public Health Ethics 14 (1):23-34.
    We have investigated attitudes towards the use of health data among the Swedish population by analyzing data from a survey answered by 1645 persons. Health data are potentially useful for a variety of purposes. Yet information about health remains sensitive. A balance therefore has to be struck between these opposing considerations in a number of contexts. The attitudes among those whose data is concerned will influence the perceived legitimacy of policies regulating health data use. We aimed to investigate what views (...)
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