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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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  • Medicine, market and communication: ethical considerations in regard to persuasive communication in direct-to-consumer genetic testing services.Manuel Schaper & Silke Schicktanz - 2018 - BMC Medical Ethics 19 (1):1-11.
    Commercial genetic testing offered over the internet, known as direct-to-consumer genetic testing (DTC GT), currently is under ethical attack. A common critique aims at the limited validation of the tests as well as the risk of psycho-social stress or adaption of incorrect behavior by users triggered by misleading health information. Here, we examine in detail the specific role of advertising communication of DTC GT companies from a medical ethical perspective. Our argumentative analysis departs from the starting point that DTC GT (...)
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  • Direct-to-consumer genomics on the scales of autonomy.Effy Vayena - 2015 - Journal of Medical Ethics 41 (4):310-314.
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  • Towards a Design Toolkit of Informed Consent Models Across Fields: A Systematic Review.Iris Loosman & Philip J. Nickel - 2022 - Science and Engineering Ethics 28 (5):1-19.
    In the 60+ years that the modern concept of informed consent has been around, researchers in various fields of practice, especially medical ethics, have developed new models to overcome theoretical and practical problems. While (systematic) literature reviews of such models exist within given fields (e.g., genetic screening), this article breaks ground by analyzing academic literature on consent models across fields. Three electronic research databases (Scopus, Google Scholar, and Web of Science) were searched for publications mentioning informed consent models. The titles, (...)
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  • Commercial DNA tests and police investigations: a broad bioethical perspective.Nina F. de Groot, Britta C. van Beers & Gerben Meynen - 2021 - Journal of Medical Ethics 47 (12):788-795.
    Over 30 million people worldwide have taken a commercial at-home DNA test, because they were interested in their genetic ancestry, disease predisposition or inherited traits. Yet, these consumer DNA data are also increasingly used for a very different purpose: to identify suspects in criminal investigations. By matching a suspect’s DNA with DNA from a suspect’s distant relatives who have taken a commercial at-home DNA test, law enforcement can zero in on a perpetrator. Such forensic use of consumer DNA data has (...)
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  • What is a good health check? An interview study of health check providers’ views and practices.Yrrah H. Stol, Eva C. A. Asscher & Maartje H. N. Schermer - 2017 - BMC Medical Ethics 18 (1):55.
    Health checks identify disease in people without symptoms. They may be offered by the government through population screenings and by other providers to individual users as ‘personal health checks’. Health check providers’ perspective of ‘good’ health checks may further the debate on the ethical evaluation and possible regulation of these personal health checks. In 2015, we interviewed twenty Dutch health check providers on criteria for ‘good’ health checks, and the role these criteria play in their practices. Providers unanimously formulate a (...)
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