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  1. Brain Data in Context: Are New Rights the Way to Mental and Brain Privacy?Daniel Susser & Laura Y. Cabrera - 2023 - American Journal of Bioethics Neuroscience 15 (2):122-133.
    The potential to collect brain data more directly, with higher resolution, and in greater amounts has heightened worries about mental and brain privacy. In order to manage the risks to individuals posed by these privacy challenges, some have suggested codifying new privacy rights, including a right to “mental privacy.” In this paper, we consider these arguments and conclude that while neurotechnologies do raise significant privacy concerns, such concerns are—at least for now—no different from those raised by other well-understood data collection (...)
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  • Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism.John A. Lynch, Aaron J. Goldenberg, Kyle B. Brothers & Nanibaa' A. Garrison - 2019 - American Journal of Bioethics 19 (1):51-63.
    As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. (...)
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  • “I Am Who I Am”: On the Perceived Threats to Personal Identity from Deep Brain Stimulation. [REVIEW]Françoise Baylis - 2011 - Neuroethics 6 (3):513-526.
    This article explores the notion of the dislocated self following deep brain stimulation (DBS) and concludes that when personal identity is understood in dynamic, narrative, and relational terms, the claim that DBS is a threat to personal identity is deeply problematic. While DBS may result in profound changes in behaviour, mood and cognition (characteristics closely linked to personality), it is not helpful to characterize DBS as threatening to personal identity insofar as this claim is either false, misdirected or trivially true. (...)
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  • Beyond the Medical Model? Disability, Formal Justice, and the Exception for the "Profoundly Impaired".Sara Goering - 2002 - Kennedy Institute of Ethics Journal 12 (4):373-388.
    The formal justice model proposed by Anita Silvers in Disability, Discrimination, and Difference emphasizes the social model of disability and the need for full equality of opportunity, and it suggests that a distributive model of justice that gives special benefits to individuals with disabilities is self-defeating. Yet in that work, Silvers allows an exception for the "profoundly impaired." In this paper, I show how the formal justice theory falls short when it comes to defining and dealing with "profoundly impaired" individuals (...)
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  • Is Genetic Exceptionalism Past Its Sell-By Date? On Genomic Diaries, Context, and Content.Thomas H. Murray - 2019 - American Journal of Bioethics 19 (1):13-15.
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  • Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations.George J. Annas, Leonard H. Glantz & Patricia A. Roche - 1995 - Journal of Law, Medicine and Ethics 23 (4):360-366.
    Only 27 percent of Americans in a 1995 Harris poll said they had read or heard “quite a lot” about genetic tests. Nonetheless, 68 percent said they would be either “very likely” or “somewhat likely” to undergo genetic testing even for diseases “for which there is presently no cure or treatment.” Perhaps most astonishing, 56 percent found it either “very” or “somewhat acceptable” to develop a government computerized DNA bank with samples taken from all newborns, and their names attached to (...)
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  • Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations.George J. Annas, Leonard H. Glantz & Patricia A. Roche - 1995 - Journal of Law, Medicine and Ethics 23 (4):360-366.
    Only 27 percent of Americans in a 1995 Harris poll said they had read or heard “quite a lot” about genetic tests. Nonetheless, 68 percent said they would be either “very likely” or “somewhat likely” to undergo genetic testing even for diseases “for which there is presently no cure or treatment.” Perhaps most astonishing, 56 percent found it either “very” or “somewhat acceptable” to develop a government computerized DNA bank with samples taken from all newborns, and their names attached to (...)
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