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  1. The ethics of synthetic DNA.Villalba Adrian, Anna Smajdor, Iain Brassington & Daniela Cutas - 2024 - Journal of Medical Ethics.
    In this paper, we discuss the ethical concerns that may arise from the synthesis of human DNA. To date, only small stretches of DNA have been constructed, but the prospect of generating human genomes is becoming feasible. At the same time, the significance of genes for identity, health and reproduction is coming under increased scrutiny. We examine the implications of DNA synthesis and its impact on debates over the relationship with our DNA and the ownership of our genes, its potential (...)
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  • Brain Exceptionalism? Learning From the Past With an Eye Toward the Future.Eran Klein & Nicolae Morar - 2024 - American Journal of Bioethics Neuroscience 15 (2):139-141.
    Discussions about brain data and privacy, particularly those advocating for human rights frameworks, at times, have embodied problematic undercurrents of, if not overt appeals to, neuro-exceptional...
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  • Ethical Discourse on Epigenetics and Genome Editing: The Risk of (Epi-) genetic Determinism and Scientifically Controversial Basic Assumptions.Karla Alex & Eva C. Winkler - 2021 - In Michael Welker, Eva Winkler & John Witte Jr (eds.), The Impact of Health Care on Character Formation, Ethical Education, and the Communication of Values in Late Modern Pluralistic Societies. Leipzig: Evangelische Verlagsanstalt & Wipf & Stock Publishers. pp. 77-99.
    Excerpt: 1. Introduction This chapter provides insight into the diverse ethical debates on genetics and epigenetics. Much controversy surrounds debates about intervening into the germline genome of human embryos, with catchwords such as genome editing, designer baby, and CRISPR/Cas. The idea that it is possible to design a child according to one’s personal preferences is, however, a quite distorted view of what is actually possible with new gene technologies and gene therapies. These are much more limited than the editing and (...)
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  • The ‘Ethic of Knowledge’ and Responsible Science: Responses to Genetically Motivated Racism.Natan Elgabsi - 2022 - Social Studies of Science 52 (2):303-323.
    This study takes off from the ethical problem that racism grounded in population genetics raises. It is an analysis of four standard scientific responses to the problem of genetically motivated racism, seen in connection with the Human Genome Diversity Project (HGDP): (1) Discriminatory uses of scientific facts and arguments are in principle ‘misuses’ of scientific data that the researcher cannot be further responsible for. (2) In a strict scientific sense, genomic facts ‘disclaim racism’, which means that an epistemically correct grasp (...)
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  • Is Dupras and Bunnik’s Framework for Assessing Privacy Risks in Multi-Omic Research and Databases Still Too Exceptionalist?Karla Alex & Eva C. Winkler - 2021 - American Journal of Bioethics 21 (12):80-82.
    Dupras and Bunnik’s strong statement against the normative approach of genetic exceptionalism, which can no longer be justified in the midst of multi-omic research, is of great importance fo...
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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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  • Ethischer Diskurs zu Epigenetik und Genomeditierung: die Gefahr eines (epi-)genetischen Determinismus und naturwissenschaftlich strittiger Grundannahmen.Karla Karoline Sonne Kalinka Alex & Eva C. Winkler - 2021 - In Boris Fehse, Ferdinand Hucho, Sina Bartfeld, Stephan Clemens, Tobias Erb, Heiner Fangerau, Jürgen Hampel, Martin Korte, Lilian Marx-Stölting, Stefan Mundlos, Angela Osterheider, Anja Pichl, Jens Reich, Hannah Schickl, Silke Schicktanz, Jochen Taupitz, Jörn Walter, Eva Winkler & Martin Zenke (eds.), Fünfter Gentechnologiebericht: Sachstand und Perspektiven für Forschung und Anwendung. pp. 299-323.
    Slightly modified excerpt from the section 13.4 Zusammenfassung und Ausblick (translated into englisch): This chapter is based on an analysis of ethical debates on epigenetics and genome editing, debates, in which ethical arguments relating to future generations and justice play a central role. The analysis aims to contextualize new developments in genetic engineering, such as genome and epigenome editing, ethically. At the beginning, the assumptions of "genetic determinism," on which "genetic essentialism" is based, of "epigenetic determinism" as well as "genetic" (...)
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  • Genomic privacy, identity and dignity.Shlomo Cohen & Ro'I. Zultan - 2022 - Journal of Medical Ethics 48:317-322.
    Significant advancements towards a future of big data genomic medicine, associated with large-scale public dataset repositories, intensify dilemmas of genomic privacy. To resolve dilemmas adequately, we need to understand the relative force of the competing considerations that make them up. Attitudes towards genomic privacy are complex and not well understood; understanding is further complicated by the vague claim of ‘genetic exceptionalism’. In this paper, we distinguish between consequentialist and non-consequentialist privacy interests: while the former are concerned with harms secondary to (...)
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  • Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases.Charles Dupras & Eline M. Bunnik - 2021 - American Journal of Bioethics 21 (12):46-64.
    While the accumulation and increased circulation of genomic data have captured much attention over the past decade, privacy risks raised by the diversification and integration of omics have been la...
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  • Predictive Health Information and Employment Discrimination under the ADA and GINA.Mark A. Rothstein - 2020 - Journal of Law, Medicine and Ethics 48 (3):595-602.
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  • On What We Have Learned and Still Need to Learn about the Psychosocial Impacts of Genetic Testing.Erik Parens & Paul S. Appelbaum - 2019 - Hastings Center Report 49 (S1):2-9.
    Since the start of the program to investigate the ethical, legal, and social implications (ELSI) of the Human Genome Project in 1990, many ELSI scholars have maintained that genetic testing should be used with caution because of the potential for negative psychosocial effects associated with receiving genetic information. More recently, though, some ELSI scholars have produced evidence suggesting that the original ELSI concerns were unfounded, exaggerated, or, at a minimum, misdirected. At least in the contexts that have been most studied, (...)
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  • Genetic Contextualism and the Value of a Structured Process.Jeffrey R. Botkin - 2019 - American Journal of Bioethics 19 (1):72-73.
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  • It’s the Idiom, Stupid: A Plea for Formal Rhetorical Analysis in Bioethics.Jeremy R. Garrett - 2019 - American Journal of Bioethics 19 (1):67-69.
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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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  • Genomes in Context.Wylie Burke - 2019 - American Journal of Bioethics 19 (1):66-67.
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  • How Can We Integrate Interests and Reasoned Arguments in Bioethics?Celeste M. Condit - 2019 - American Journal of Bioethics 19 (1):64-65.
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  • Unpacking the Concept of a Genomic Result.Angela Fenwick, Anneke Lucassen & Rachel Horton - 2019 - American Journal of Bioethics 19 (1):70-71.
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  • “DNA Is Information, and Genetics Is Information Technology”: Reconsidering the Genetic Code.Stacey Pereira - 2019 - American Journal of Bioethics 19 (1):75-76.
    In their article “Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism,” Garrison and colleagues (2019) make a compelling case for moving away from the rhetoric of genetic excepti...
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  • Genomic Essentialism: Its Provenance and Trajectory as an Anticipatory Ethical Concern.Maya Sabatello & Eric Juengst - 2019 - Hastings Center Report 49 (S1):10-18.
    Since the inception of large‐scale human genome research, there has been much caution about the risks of exacerbating a number of socially dangerous attitudes linked to human genetics. These attitudes are usually labeled with one of a family of genetic or genomic “isms” or “ations” such as “genetic essentialism,” “genetic determinism,” “genetic reductionism,” “geneticization,” “genetic stigmatization,” and “genetic discrimination.” The psychosocial processes these terms refer to are taken to exacerbate several ills that are similarly labeled, from medical racism and psychological (...)
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  • Toward Broader Genetic Contextualism: Genetic Testing Enters the Age of Evidence-Based Medicine.Vardit Ravitsky, Julie Richer & Anne-Marie Laberge - 2019 - American Journal of Bioethics 19 (1):77-79.
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  • Old consent and new developments: health professionals should ask and not presume.Rachel Horton, Angela Fenwick & Anneke M. Lucassen - 2020 - Journal of Medical Ethics 46 (6):412-413.
    We thank Lucy Frith for her thought-provoking response1 to our paper, where we argued that it would be ethically acceptable to contact an anonymous egg donor to help facilitate diagnostic genetic testing for a donor-conceived child.2 While we read Frith’s commentary with interest, we still think that the egg donor should be contacted in the case that we describe. Frith raises concerns as to whether contact would constitute ‘ overriding consent ’, thus ’ potentially set(ting) a dangerous precedent ’ for (...)
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  • Genomic Contextualism, Genetic Determinism, and Causal Models.Angie Boyce - 2019 - American Journal of Bioethics 19 (1):73-75.
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  • The human genome project.Lisa Gannett - 2009 - Stanford Encyclopedia of Philosophy.
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  • Response to Open Peer Commentaries on Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases.Charles Dupras & Eline M. Bunnik - 2022 - American Journal of Bioethics 22 (9):4-6.
    In ‘Toward a Framework for Assessing Privacy Risks in Multi-Omic Research and Databases’ (Dupras and Bunnik 2021), we argued against the assessment of privacy risks and protection requirements base...
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  • Genetic Data Aren't So Special: Causes and Implications of Reidentification.T. J. Kasperbauer & Peter H. Schwartz - 2020 - Hastings Center Report 50 (5):30-39.
    Genetic information is widely thought to pose unique risks of reidentifying individuals. Genetic data reveals a great deal about who we are and, the standard view holds, should consequently be treated differently from other types of data. Contrary to this view, we argue that the dangers of reidentification for genetic and nongenetic data—including health, financial, and consumer information—are more similar than has been recognized. Before different requirements are imposed around sharing genetic information, proponents of the standard view must show that (...)
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  • Editing the Gene Editing Debate: Reassessing the Normative Discussions on Emerging Genetic Technologies.Oliver Feeney - 2019 - NanoEthics 13 (3):233-243.
    The revolutionary potential of the CRISPR-Cas9 gene editing technique has created a resurgence in enthusiasm and concern in genetic research perhaps not seen since the mapping of the human genome at the turn of the century. Some such concerns and anxieties revolve around crossing lines between somatic and germline interventions as well as treatment and enhancement applications. Underpinning these concerns, there are familiar concepts of safety, unintended consequences and damage to genetic identity and the creation of designer children through pursuing (...)
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  • Neuroethics: Fostering Collaborations to Enable Neuroscientific Discovery.Nita Farahany & Khara M. Ramos - 2020 - American Journal of Bioethics Neuroscience 11 (3):148-154.
    The NIH-funded Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Initiative has led to significant advances in what we know about the functions and capacities of the brain. This multifaceted and expansive effort supports a range of experimentation from cells to circuits, and its outputs promise to ease suffering from various neurological injuries, diseases, and neuropsychiatric conditions. At the midway point of the 10-year BRAIN Initiative, we pause to consider how these studies, and neuroscience research more broadly, may bear on human (...)
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  • The Role of Exceptionalism in the Evolution of Bioethical Regulation.Sergei Shevchenko & Alexey Zhavoronkov - 2024 - Cambridge Quarterly of Healthcare Ethics 33 (2):185-197.
    The paper aims to present a critical analysis of the phenomenon and notion of exceptionalism in bioethics. The authors demonstrate that exceptionalism pertains to phenomena that are not (yet) entirely familiar to us and could potentially bear risks regarding their regulation. After an overview of the state of the art, we briefly describe the origins and evolution of the concept, compared to exception and exclusion. In the second step, they look at the overall development debates on genetic exceptionalism, compared to (...)
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  • Researcher Perspectives on Data Sharing in Deep Brain Stimulation.Peter Zuk, Clarissa E. Sanchez, Kristin Kostick, Laura Torgerson, Katrina A. Muñoz, Rebecca Hsu, Lavina Kalwani, Demetrio Sierra-Mercado, Jill O. Robinson, Simon Outram, Barbara A. Koenig, Stacey Pereira, Amy L. McGuire & Gabriel Lázaro-Muñoz - 2020 - Frontiers in Human Neuroscience 14:578687.
    The expansion of research on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises important neuroethics and policy questions related to data sharing. However, there has been little empirical research on the perspectives of experts developing these technologies. We conducted semi-structured, open-ended interviews with aDBS researchers regarding their data sharing practices and their perspectives on ethical and policy issues related to sharing. Researchers expressed support for and a commitment to sharing, with most saying that they were either sharing their data (...)
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  • Attitudes Towards Non-directiveness Among Medical Geneticists in Germany and Switzerland.J. Eichinger, B. S. Elger, S. McLennan, I. Filges & I. Koné - forthcoming - Journal of Bioethical Inquiry:1-12.
    The principle of non-directiveness remains an important tenet in genetics. However, the concept has encountered growing criticism over the last two decades. There is an ongoing discussion about its appropriateness for specific situations in genetics, especially in light of recent significant advancements in genetic medicine. Despite the debate surrounding non-directiveness, there is a notable lack of up-to-date international research empirically investigating the issue from the perspective of those who actually do genetic counselling. Addressing this gap, our article delves into the (...)
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