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  1. Is There a Right Time to Know?: The Right Not to Know and Genetic Testing in Children.Pascal Borry, Mahsa Shabani & Heidi Carmen Howard - 2014 - Journal of Law, Medicine and Ethics 42 (1):19-27.
    The increasing implementation of next-generation sequencing technologies in the clinical context and the expanding commercial offer of genetic tests directly-toconsumers has increased the availability of previously inaccessible genetic information. A particular concern in both situations is how the volume of novel information will affect the processing of genetic and genomic information from minors. For minors, it is argued that in the provision of genetic testing, their “right not to know” should be respected as much as possible. Testing a minor early (...)
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  • Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications.Graeme Laurie - 2014 - Journal of Law, Medicine and Ethics 42 (1):53-63.
    This article argues for the importance of conceptual clarity in the debate about the so-called right not to know. This is vital both at the theoretical and the practical level. It is suggested that, unlike many formulations and attempts to give effect to this right, what is at stake is not merely an aspect of personal autonomy and therefore cannot and should not be reduced only to a question of individual choice. Rather, it is argued that the core interests that (...)
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  • Expanding Access to Testicular Tissue Cryopreservation: An Analysis by Analogy.Tuua Ruutiainen, Steve Miller, Arthur Caplan & Jill P. Ginsberg - 2013 - American Journal of Bioethics 13 (3):28-35.
    Researchers are developing a fertility preservation technique?testicular tissue cryopreservation (TTCP)?for prepubescent boys who may become infertile as a result of their cancer treatment. Although this technique is still in development, some researchers are calling for its widespread use. They argue that if boys do not bank their tissue now, they will be unable to benefit from any therapies that might be developed in the future. There are, however, risks involved with increasing access to an investigational procedure. This article examines four (...)
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  • The child's right to an open future.Joel Feinberg - 2006 - In Randall R. Curren (ed.), Philosophy of Education: An Anthology. Malden, MA: Wiley-Blackwell.
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  • Special Supplement: The XYY Controversy: Researching Violence and Genetics.Diane Bauer, Ronald Bayer, Jonathan Beckwith, Gordon Bermant, Digamber S. Borgaonkar, Daniel Callahan, Arthur Caplan, John Conrad, Charles M. Culver, Gerald Dworkin, Harold Edgar, Willard Gaylin, Park Gerald, Clarence Harris, Johnathan King, Ruth Macklin, Allan Mazur, Robert Michels, Carola Mone, Rosalind Petchesky, Tabitha M. Powledge, Reed E. Pyeritz, Arthur Robinson, Thomas Scanlon, Saleem A. Shah, Thomas A. Shannon, Margaret Steinfels, Judith P. Swazey, Paul Wachtel & Stanley Walzer - 1980 - Hastings Center Report 10 (4):1.
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  • Paper: The return of individual research findings in paediatric genetic research.Kristien Hens, Herman Nys, Jean-Jacques Cassiman & Kris Dierickx - 2011 - Journal of Medical Ethics 37 (3):179-183.
    The combination of the issue of return of individual genetic results/incidental findings and paediatric biobanks is not much discussed in ethical literature. The traditional arguments pro and con return of such findings focus on principles such as respect for persons, autonomy and solidarity. Two dimensions have been distilled from the discussion on return of individual results in a genetic research context: the respect for a participant’s autonomy and the duty of the researcher. Concepts such as autonomy and solidarity do not (...)
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  • Freedom and Fulfillment. [REVIEW]Carl Wellman & Joel Feinberg - 1996 - Philosophical Review 105 (3):413.
    This is a third volume of philosophical essays by Joel Feinberg. It exemplifies the clear and elegant formulation, useful conceptual distinctions, perceptive and imaginative insights, and powerful argument we have come to expect from him. Each of the first twelve essays deals with a problem of importance to moral philosophy and philosophy of law; the last two provide a preliminary taste of his projected inquiry into the absurd. Although these essays are diverse, Feinberg informs us that this volume continues its (...)
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  • Is There a Right Time to Know?: The Right Not to Know and Genetic Testing in Children.Pascal Borry, Mahsa Shabani & Heidi Carmen Howard - 2014 - Journal of Law, Medicine and Ethics 42 (1):19-27.
    In the last few decades, great progress has been made in both genetic and genomic research. The development of the Human Genome Project has increased our knowledge of the genetic basis of diseases and has given a tremendous momentum to the development of new technologies that make widespread genetic testing possible and has increased the availability of previously inaccessible genetic information. Two examples of this exponential evolution are the increasing implementation of next-generation sequencing technologies in the clinical context and the (...)
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  • Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications.Graeme Laurie - 2014 - Journal of Law, Medicine and Ethics 42 (1):53-63.
    The right not to know is a contested matter. This can be because the inversion of the normal framing of entitlement to information about one's own health is thought to be illogical and inconsistent with self-authorship and/or because the very idea of claiming a right not to know information is an inappropriate appeal to the discourse of rights that places impossible responsibilities on others. Notwithstanding, there has been a sustained increase in this kind of appeal in recent years fueled in (...)
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  • Preserving Testicular Tissue and a Boy's Open Reproductive Future.Valerie B. Satkoske & Lisa S. Parker - 2013 - American Journal of Bioethics 13 (3):36-37.
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  • Freedom and Fulfillment: Philosophical Essays.Joel Feinberg - 1992 - Princeton University Press.
    This collection concludes with two essays dealing with concepts used in appraising the whole of a person's life: absurdity and self-fulfillment, and their interplay.Dealing with a diverse set of problems in practical and theoretical ethics, ...
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  • Will Artificial Gametes End Infertility?Anna Smajdor & Daniela Cutas - 2015 - Health Care Analysis 23 (2):134-147.
    In this paper we will look at the various ways in which infertility can be understood and at how need for reproductive therapies can be construed. We will do this against the background of research with artificial gametes. Having explored these questions we will attempt to establish the degree to which technologies such as AGs could expand the array of choices that people have to reproduce and/or become parents. Finally, we will examine whether and in what ways the most promising (...)
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  • Preserving Testicular Tissue and a Boy's Open Reproductive Future.Valerie B. Satkoske & Lisa S. Parker - 2013 - TThe American Journal of Bioethics 13 (3):36 - 37.
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  • Preserving the Right to Future Children: An Ethical Case Analysis.Gwendolyn P. Quinn, Daniel K. Stearsman, Lisa Campo-Engelstein & Devin Murphy - 2012 - American Journal of Bioethics 12 (6):38-43.
    We report on the case of a 2-year-old female, the youngest person ever to undergo ovarian tissue cryopreservation (OTC). This patient was diagnosed with a rare form of sickle cell disease, which required a bone-marrow transplant, and late effects included high risk of future infertility or complete sterility. Ethical concerns are raised, as the patient's mother made the decision for OTC on the patient's behalf with the intention that this would secure the option of biological childbearing in the future. Based (...)
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