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  1. From Expectations to Experiences: Consumer Autonomy and Choice in Personal Genomic Testing.Jacqueline Savard, Chriselle Hickerton, Sylvia A. Metcalfe, Clara Gaff, Anna Middleton & Ainsley J. Newson - 2020 - AJOB Empirical Bioethics 11 (1):63-76.
    Background: Personal genomic testing (PGT) offers individuals genetic information about relationships, wellness, sporting ability, and health. PGT is increasingly accessible online, including in emerging markets such as Australia. Little is known about what consumers expect from these tests and whether their reflections on testing resonate with bioethics concepts such as autonomy. Methods: We report findings from focus groups and semi-structured interviews that explored attitudes to and experiences of PGT. Focus group participants had little experience with PGT, while interview participants had (...)
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  • Direct-to-Consumer Genetic Testing and Its Marketing: Emergent Ethical and Public Policy Implications.Alexander Nill & Gene Laczniak - 2020 - Journal of Business Ethics 175 (4):669-688.
    This paper provides a marketing ethics analysis that addresses the practice of selling genetic tests directly to the consumer. It details the complexity of this emergent sector by articulating the panoply of evolving ethical/social questions raised by this development. It advances the conversation about DTC genetic testing by reviewing the business and healthcare literature concerning this topic and by laying out the inherent ethical complications for consumers, marketers, and regulators. It also points to several possible public and company policy adjustments. (...)
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  • Sport-related concussion research agenda beyond medical science: culture, ethics, science, policy.Mike McNamee, Lynley C. Anderson, Pascal Borry, Silvia Camporesi, Wayne Derman, Soren Holm, Taryn Rebecca Knox, Bert Leuridan, Sigmund Loland, Francisco Javier Lopez Frias, Ludovica Lorusso, Dominic Malcolm, David McArdle, Brad Partridge, Thomas Schramme & Mike Weed - forthcoming - Journal of Medical Ethics.
    The Concussion in Sport Group guidelines have successfully brought the attention of brain injuries to the global medical and sport research communities, and has significantly impacted brain injury-related practices and rules of international sport. Despite being the global repository of state-of-the-art science, diagnostic tools and guides to clinical practice, the ensuing consensus statements remain the object of ethical and sociocultural criticism. The purpose of this paper is to bring to bear a broad range of multidisciplinary challenges to the processes and (...)
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  • Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.Marieke A. R. Bak & Dick L. Willems - 2022 - Science and Engineering Ethics 28 (4):1-20.
    In this article, we use the theory of Information Ethics to argue that deceased people have a prima facie moral right to privacy in the context of health data research, and that this should be reflected in regulation and guidelines. After death, people are no longer biological subjects but continue to exist as informational entities which can still be harmed/damaged. We find that while the instrumental value of recognising post-mortem privacy lies in the preservation of the social contract for health (...)
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  • Rethinking Explicit Consent and Intimate Data: The Case of Menstruapps.Daniela Alaattinoğlu - 2022 - Feminist Legal Studies 30 (2):157-179.
    Period-tracking software applications or ‘menstruapps’ have witnessed a surge in popularity in recent years. At the same time, many of them are a part of the adtech industry, using business models that create revenue by selling users’ personal and intimate data. This exploratory article brings menstruapps into a feminist legal debate. It investigates the supranational European legal standards on intimate and sensitive data processing, particularly the General Data Protection Regulation. Scrutinising explicit consent according to GDPR Article 9, this paper, through (...)
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