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  1. Reframing Consent for Clinical Research: A Function-Based Approach.Scott Y. H. Kim, David Wendler, Kevin P. Weinfurt, Robert Silbergleit, Rebecca D. Pentz, Franklin G. Miller, Bernard Lo, Steven Joffe, Christine Grady, Sara F. Goldkind, Nir Eyal & Neal W. Dickert - 2017 - American Journal of Bioethics 17 (12):3-11.
    Although informed consent is important in clinical research, questions persist regarding when it is necessary, what it requires, and how it should be obtained. The standard view in research ethics is that the function of informed consent is to respect individual autonomy. However, consent processes are multidimensional and serve other ethical functions as well. These functions deserve particular attention when barriers to consent exist. We argue that consent serves seven ethically important and conceptually distinct functions. The first four functions pertain (...)
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  • The Ethics of Germline Gene Editing.Gyngell Christopher, Douglas Thomas & Savulescu Julian - 2017 - Journal of Applied Philosophy 34 (4):498-513.
    Germline Gene Editing has enormous potential both as a research tool and a therapeutic intervention. While other types of gene editing are relatively uncontroversial, GGE has been strongly resisted. In this article, we analyse the ethical arguments for and against pursuing GGE by allowing and funding its development. We argue there is a strong case for pursuing GGE for the prevention of disease. We then examine objections that have been raised against pursuing GGE and argue that these fail. We conclude (...)
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  • Genetic Engineering and the Consent of Future Persons.Martin Gunderson - 2008 - Journal of Evolution and Technology 18 (1):86-93.
    The debate over whether germ-line genetic engineering is justified on the basis of the consent or presumed consent of future generations is mired in philosophical confusion. Because of this, the principle of informed consent fails to provide a reason to restrict germ-line genetic engineering. Most recent bioethicists ground the consent requirement on individual autonomy. While conceptually coherent, the notion of individual autonomy also fails to provide a reason for prohibiting germ-line genetic engineering. Moreover, it offers little in the way of (...)
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  • The Future of Human Nature.Jurgen Habermas - 2004 - Philosophy 79 (309):483-486.
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  • The Social Value Requirement Reconsidered.Alan Wertheimer - 2014 - Bioethics 29 (5):301-308.
    It is widely assumed that it is ethical to conduct research with human subjects only if the research has social value. There are two standard arguments for this view. The allocation argument claims that public funds should not be devoted to research that lacks social value. The exploitation avoidance argument claims that subjects are exploited if research has no social value. The primary purpose of this article is to argue that these arguments do not succeed. The allocation argument has little (...)
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  • The fair transaction model of informed consent: An alternative to autonomous authorization.Franklin G. Miller & Alan Wertheimer - 2011 - Kennedy Institute of Ethics Journal 21 (3):201-218.
    Prevailing ethical thinking about informed consent to clinical research is characterized by theoretical confidence and practical disquiet. On the one hand, bioethicists are confident that informed consent is a fundamental norm. And, for the most part, they are confident that what makes consent to research valid is that it constitutes an autonomous authorization by the research participant. On the other hand, bioethicists are uneasy about the quality of consent in practice. One major source of this disquiet is substantial evidence of (...)
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  • CRISPR/Cas9 and Germline Modification: New Difficulties in Obtaining Informed Consent.Joanna Smolenski - 2015 - American Journal of Bioethics 15 (12):35-37.
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  • The Future of Human Nature.Jürgen Habermas - 2003 - Cambridge, UK: Polity. Edited by Jürgen Habermas.
    Recent developments in biotechnology and genetic research are raising complex ethical questions concerning the legitimate scope and limits of genetic intervention. As we begin to contemplate the possibility of intervening in the human genome to prevent diseases, we cannot help but feel that the human species might soon be able to take its biological evolution in its own hands. 'Playing God' is the metaphor commonly used for this self-transformation of the species, which, it seems, might soon be within our grasp. (...)
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  • Human Germline CRISPR-Cas Modification: Toward a Regulatory Framework.Niklaus H. Evitt, Shamik Mascharak & Russ B. Altman - 2015 - American Journal of Bioethics 15 (12):25-29.
    CRISPR germline editing therapies hold unprecedented potential to eradicate hereditary disorders. However, the prospect of altering the human germline has sparked a debate over the safety, efficacy, and morality of CGETs, triggering a funding moratorium by the NIH. There is an urgent need for practical paths for the evaluation of these capabilities. We propose a model regulatory framework for CGET research, clinical development, and distribution. Our model takes advantage of existing legal and regulatory institutions but adds elevated scrutiny at each (...)
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