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  1. Reforming Informed Consent: On Disability and Genetic Counseling.Elizabeth Dietz & Joel Michael Reynolds - forthcoming - In Michael J. Deem, Emily Farrow & Robin Grubs (eds.), The Oxford Handbook of Genetic Counseling. Oxford: Oxford University Press.
    Informed consent is a central concept for empirical and theoretical research concerning pregnancy management decisions and is often taken to be one of the more fundamental goals of the profession of genetic counseling. Tellingly, this concept has been seen by disability communities as salutary, despite longstanding critiques made by disability activists, advocates, and scholars concerning practices involved in genetic counseling more generally. In this chapter, we show that the widespread faith in informed consent is misleading and can be detrimental to (...)
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  2. Bioethical Aspects of Medical Applications of Human Genome and Gene Therapy Projects in Russia.Vladimir I. Ivanov - forthcoming - Bioethics in Asia. The Proceedings of the Unesco Asian Bioethics Conference and the Who-Assisted Satellite Symposium on Medical Genetics Services.
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  3. Improving the Justice‐Based Argument for Conducting Human Gene Editing Research to Cure Sickle Cell Disease.Berman Chan - 2020 - Bioethics 34 (2):200-202.
    In a recent article, Marilyn Baffoe-Bonnie offers three arguments for conducting CRISPR/Cas9 biotechnology research to cure sickle-cell disease (SCD) based on addressing historical and current injustices in SCD research and care. I show that her second and third arguments suffer from roughly the same defect, which is that they really argue for something else rather than for conducting CRISPR/Cas9 research in particular for SCD. For instance, the second argument argues that conducting this gene therapy research would improve the relationship between (...)
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  4. The Trust Game CRISPR for Human Germline Editing Unsettles Scientists and Society.Matthias Braun & Darian Meacham - 2019 - EMBO Reports 20 (2).
  5. Cloning Centering at Egoism.Yusuke Kaneko - 2019 - The Basis : The Annual Bulletin of Research Center for Liberal Education 9:245-260.
    Cloning research caught a great deal of attention when Dolly the sheep was born (§4). While some fear surrounded the attainment (§§14-15), Wilmutʼs research itself has grown well, providing a less vicious manner to gain ES cells (§12). In this article, we review the progress of cloning research along with the concern of medical circles about its application to reproductive cloning, that is to say, making replicas of human beings (§§16-21). Note that all the content is ascribed to the author (...)
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  6. Biomarkers for the Rich and Dangerous: Why We Ought to Extend Bioprediction and Bioprevention to White-Collar Crime.Hazem Zohny, Thomas Douglas & Julian Savulescu - 2019 - Criminal Law and Philosophy 13 (3):479-497.
    There is a burgeoning scientific and ethical literature on the use of biomarkers—such as genes or brain scan results—and biological interventions to predict and prevent crime. This literature on biopredicting and biopreventing crime focuses almost exclusively on crimes that are physical, violent, and/or sexual in nature—often called blue-collar crimes—while giving little attention to less conventional crimes such as economic and environmental offences, also known as white-collar crimes. We argue here that this skewed focus is unjustified: white-collar crime is likely far (...)
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  7. The Ethics of General Population Preventive Genomic Sequencing: Rights and Social Justice.Clair Morrissey & Rebecca L. Walker - 2018 - Journal of Medicine and Philosophy 43 (1):22-43.
    Advances in DNA sequencing technology open new possibilities for public health genomics, especially in the form of general population preventive genomic sequencing. Such screening programs would sit at the intersection of public health and preventive health care, and thereby at once invite and resist the use of clinical ethics and public health ethics frameworks. Despite their differences, these ethics frameworks traditionally share a central concern for individual rights. We examine two putative individual rights—the right not to know, and the child’s (...)
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  8. Personalised Medicine, Individual Choice and the Common Good.Britta van Beers, Sigrid Sterckx & Donna Dickenson (eds.) - 2018 - Cambridge: Cambridge University Press.
    This is a volume of twelve essays concerning the fundamental tension in personalised medicine between individual choice and the common good.
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  9. Bioethics: Reincarnation of Natural Philosophy in Modern Science.Valentin Teodorovich Cheshko, Valery I. Glazko & Yulia V. Kosova - 2017 - Biogeosystem Technique 4 (2):111-121.
    The theory of evolution of complex and comprising of human systems and algorithm for its constructing are the synthesis of evolutionary epistemology, philosophical anthropology and concrete scientific empirical basis in modern (transdisciplinary) science. «Trans-disciplinary» in the context is interpreted as a completely new epistemological situation, which is fraught with the initiation of a civilizational crisis. Philosophy and ideology of technogenic civilization is based on the possibility of unambiguous demarcation of public value and descriptive scientific discourses (1), and the object and (...)
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  10. Pharmacogenomic Inequalities: Strategies for Justice in Biomedical Research and Healthcare.Giovanni De Grandis - 2017 - Diametros 51:153-172.
    The paper discusses the possibility that the benefits of pharmacogenomics will not be distributed equally and will create orphan populations. I argue that since these inequalities are not substantially different from those produced by ‘traditional’ drugs and are not generated with the intention to discriminate, their production needs not be unethical. Still, the final result is going against deep-seated moral feelings and intuitions, as well as broadly accepted principles of just distribution of health outcomes and healthcare. I thus propose two (...)
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  11. When the Milk of Human Kindness Becomes a Luxury Good.Inmaculada de Melo-Martin - 2017 - Cambridge Quarterly of Healthcare Ethics 26 (1):159-165.
    A new reprogenetic technology, mitochondrial replacement, is making its appearance and, unsurprisingly given its promise to wash off our earthly stains --or at least the scourges of sexual reproduction--, John Harris finds only reasons to celebrate this new scientific feat.1 In fact, he finds mitochondrial replacement techniques (MRTs) so “unreservedly welcome” that he believes those who reject them suffer from “a large degree of desperation and not a little callousness.”2 Believing myself to be neither desperate nor callous, but finding myself (...)
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  12. Parental Responsibility: A Moving Target.Dorothee Horstkötter, Daniela Cutas & Kristien Hens - 2017 - In Kristien Hens, Daniela Cutas & Dorothee Horstkötter (eds.), Parental Responsibility in the Context of Neuroscience and Genetics. Springer.
    Beliefs about the moral status of children have changed significantly in recent decades in the Western world. At the same time, knowledge about likely consequences for children of individual, parental, and societal choices has grown, as has the array of choices that (prospective) parents may have at their disposal. The intersection between these beliefs, this new knowledge, and these new choices has created a minefield of expectations from parents and a seemingly ever-expanding responsibility towards their children. Some of these new (...)
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  13. Benefit Sharing in a Global Context: Working Towards Solutions for Implementation.J. Hurst Daniel - 2017 - Developing World Bioethics 17 (2):70-76.
    Due to the state of globalized clinical research, questions have been raised as to what, if any, benefits those who contribute to research should receive. One model for compensating research participants is “benefit sharing,” and the basic premise is that, as a matter of justice, those who contribute to scientific research should share in its benefits. While incorporated into several international documents for over two decades, benefit sharing has only been sparsely implemented. This analysis begins by addressing the concept of (...)
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  14. Skapat liv och livets värde.Erik Persson - 2017 - In LIV – Utomjordiskt, Syntetiskt, Artificiellt. Lund, Sverige: Pufendorfinstitutet. pp. 219-237.
    Om människan någon gång kommer att få förmågan att skapa nya livsformer, hur kommer det att påverka livets värde? Detta är en fråga som kan vara en källa till oro när man diskuterar konstgjort liv, men är oron befogad? I ett försök att svara på den frågan kommer jag att gå igenom några möjliga skäl till varför förmågan att skapa konstgjort liv skulle hota livets värde, och se om de verkligen ger oss skäl att oroa oss.
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  15. Age of Genetics and the age of biotechnology on the way to editing of, human genome.Valentin Teodorovich Cheshko (ed.) - 2016 - Moscow Russia: Kurs-INFRA-M.
    The book discusses some of the stages in the development of genetics, biotechnology in terms of basic strategy of humanity towards the formation of a modern agrarian civilization. Agricultural civilization is seen as part of the biosphere and primary user of its energy flows. Consistently a steps of creation of management tools for live objects to increasing the number of food security of mankind are outlines. The elements of the biosphere degradation started in the results of human activities, and the (...)
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  16. What Do the Various Principles of Justice Mean Within the Concept of Benefit Sharing?Bege Dauda, Yvonne Denier & Kris Dierickx - 2016 - Journal of Bioethical Inquiry 13 (2):281-293.
    The concept of benefit sharing pertains to the act of giving something in return to the participants, communities, and the country that have participated in global health research or bioprospecting activities. One of the key concerns of benefit sharing is the ethical justifications or reasons to support the practice of the concept in global health research and bioprospecting. This article evaluates one of such ethical justifications and its meaning to benefit sharing, namely justice. We conducted a systematic review to map (...)
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  17. Conceptual and Terminological Confusion Around Personalised Medicine: A Coping Strategy.Giovanni De Grandis & Vidar Halgunset - 2016 - BMC Medical Ethics 17 (1):1-12.
    The idea of personalised medicine (PM) has gathered momentum recently, attracting funding and generating hopes as well as scepticism. As PM gives rise to differing interpretations, there have been several attempts to clarify the concept. In an influential paper published in this journal, Schleidgen and colleagues have proposed a precise and narrow definition of PM on the basis of a systematic literature review. Given that their conclusion is at odds with those of other recent attempts to understand PM, we consider (...)
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  18. Altruism, Jesus and the End of the World—How the Templeton Foundation Bought a Harvard Professorship and Attacked Evolution, Rationality and Civilization. A Review of E.O. Wilson 'The Social Conquest of Earth' (2012) and Nowak and Highfield ‘SuperCooperators’ (2012).Starks Michael - 2016 - In Michael Starks (ed.), Suicidal Utopian Delusions in the 21st Century: Philosophy, Human Nature and the Collapse of Civilization-- Articles and Reviews 2006-2017 2nd Edition Feb 2018. Michael Starks. pp. 527-532.
    Famous ant-man E.O. Wilson has always been one of my heroes --not only an outstanding biologist, but one of the tiny and vanishing minority of intellectuals who at least dares to hint at the truth about our nature that others fail to grasp, or insofar as they do grasp, studiously avoid for of political expedience. Sadly, he is ending his long career in a most sordid fashion as a party to an ignorant and arrogant attack on science motivated at least (...)
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  19. The Double Nature of DNA: Reevaluating the Common Heritage Idea.Matthieu Queloz - 2016 - Journal of Political Philosophy 24 (1):47-66.
    DNA possesses a double nature: it is both an analog chemical compound and a digital carrier of information. By distinguishing these two aspects, this paper aims to reevaluate the legally and politically influential idea that the human genome forms part of the common heritage of mankind, an idea which is thought to conflict with the practice of patenting DNA. The paper explores the lines of reasoning that lead to the common heritage idea, articulates and motivates what emerges as the most (...)
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  20. Potential International Approaches to Ownership/Control of Human Genetic Resources.Catherine Rhodes - 2016 - Health Care Analysis 24 (3):260-277.
    In its governance activities for genetic resources, the international community has adopted various approaches to their ownership, including: free access; common heritage of mankind; intellectual property rights; and state sovereign rights. They have also created systems which combine elements of these approaches. While governance of plant and animal genetic resources is well-established internationally, there has not yet been a clear approach selected for human genetic resources. Based on assessment of the goals which international governance of human genetic resources ought to (...)
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  21. Science and Values.Matthew J. Barker - 2015 - Eugenics Archive.
  22. The Concept of Human Dignity in the Ethics of Genetic Research.David K. Chan - 2015 - Bioethics 29 (4):274-282.
    Despite criticism that dignity is a vague and slippery concept, a number of international guidelines on bioethics have cautioned against research that is contrary to human dignity, with reference specifically to genetic technology. What is the connection between genetic research and human dignity? In this article, I investigate the concept of human dignity in its various historical forms, and examine its status as a moral concept. Unlike Kant's ideal concept of human dignity, the empirical or relational concept takes human dignity (...)
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  23. Changing Kinds: Aristotle and the Aristotelians.Stephen R. L. Clark - 2015 - Diametros 45:19-34.
    Aristotle is routinely blamed for several errors that, it is supposed, held 'science' back for centuries - among others, a belief in distinct, homogenous and unchanging species of living creatures, an essentialist account of human nature, and a suggestion that 'slavery' was a natural institution. This paper briefly examines Aristotle's own arguments and opinions, and the perils posed by a contrary belief in changeable species. Contrary to received opinion even amongst some of his followers, Aristotle was not a species essentialist (...)
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  24. Finansowanie testów genetycznych ze źródeł publicznych.Olga Dryla - 2015 - Diametros 44:1-19.
    One of the signs of the rapid development of medical genetics is a gradual increase in the number of genetic tests available. Different aspects of this phenomenon have been addressed and debated in the source literature, but so far relatively little has been said about the obligation to provide equal access – in the social context – to selected kinds of tests. In this article, I attempt to reconstruct those few suggestions, dealing with the principles of funding genetic tests from (...)
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  25. The Ethics of Human Enhancement.Alberto Giubilini & Sagar Sanyal - 2015 - Philosophy Compass 10 (4):233-243.
    Ethical debate surrounding human enhancement, especially by biotechnological means, has burgeoned since the turn of the century. Issues discussed include whether specific types of enhancement are permissible or even obligatory, whether they are likely to produce a net good for individuals and for society, and whether there is something intrinsically wrong in playing God with human nature. We characterize the main camps on the issue, identifying three main positions: permissive, restrictive and conservative positions. We present the major sub-debates and lines (...)
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  26. Benefit Sharing in Health Research.Safia Mahomed & Ian Sanne - 2015 - South African Journal of Bioethics and Law 8 (2):60.
    Biobanks are repositories that store human biological materials and their associated data. They are rapidly becoming part of national and international networks and give rise to unique ethico-regulatory issues. Whether consent is informed and whether this term should be used when specimens are collected for biobank research is questionable. Where risks occur, they are usually social and relate to identifiability. Public trust and confidence are important for the success of this type of research. Consensus is growing that governance of biobanks (...)
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  27. Ewolucja koncepcji świadomej zgody w kontekście badań naukowych z użyciem ludzkiego materiału biologicznego.Jakub Pawlikowski - 2015 - Diametros 44:89-109.
    The development of research based on human biological material has contributed to a lively debate on the concept of informed consent in these studies, particularly its scope, form and length of validity. The biggest disputes and doubts concern the range of consent for research that will be conducted in the future, whose aim and place are unknown at the time of the sample collection, as are the future researchers and the ability to use the previously collected materials again. This situation (...)
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  28. User on the Payroll – The Challenges of Revenue Sharing in Commercial Mediaspace.Juhani Linna and Mari Ainasoja - 2014 - Iris 35.
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  29. Race, Genes, and the Ethics of Belief: A Review of Nicholas Wade, A Troublesome Inheritance. [REVIEW]Jonny Anomaly - 2014 - Hastings Center Report 44 (5):51-52.
  30. Nonreductive Moral Classification and the Limits of Philosophy.Thomas V. Cunningham - 2014 - American Journal of Bioethics 14 (2):22-24.
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  31. The Ethics of Anonymous Gamete Donation: Is There a Right to Know One's Genetic Origins?Inmaculada de Melo-Martin - 2014 - Hastings Center Report 44 (2).
    A growing number of jurisdictions hold that gamete donors must be identifiable to the children born with their eggs or sperm, on grounds that being able to know about one's genetic origins is a fundamental moral right. But the argument for that belief has not yet been adequately made.
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  32. Ética para Psicólogos. Psicoética.Arévalo Benito Héctor & Cuenca R. C. - 2014 - UTPL.
    Ética para la psicología. Filosofía de la Psicología. Ética Aplicada. Psicoética.
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  33. User on the Payroll–The Challenges of Revenue Sharing in Commercial Mediaspace.Juhani Linna & Mari Ainasoja - 2014 - Iris 35.
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  34. Questioning South Africa’s ‘Genetic Link’ Requirement for Surrogacy.Thaddeus Metz - 2014 - South African Journal of Bioethics and Law 7 (1):34-39.
    South African law currently forbids those seeking to arrange a surrogate motherhood agreement from creating a child that will not be genetically related to at least one of them. For a surrogacy contract to be legally valid, there must be a ‘genetic link’ between the child created through a surrogate and the parents who will raise it. Currently, this law is being challenged in the High Court of South Africa, and in this article I critically explore salient ethical facets of (...)
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  35. Human–Nonhuman Chimeras: Enhancement or Creation?Duncan Purves - 2014 - American Journal of Bioethics 14 (2):26-27.
    I respond to Monika Piotrowska's argument against anthropocentric theories of moral status that they yield disparate moral verdicts about parallel cases of embryonic stem cell transplantation. I argue that anthropocentric theories of moral status may not fall prey to this problem because embryonic stem cell transplantation may constitute creation rather than mere enhancement.
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  36. Biobanks and Feedback.Kadri Simm - 2014 - In Ruth Chadwick, Mairi Levitt & Darren Shickle (eds.), The Right to Know and the Right not to Know. Cambridge University Press. pp. 55-70.
  37. Hedonic Possibilities and Heritability Statistics.Clifford Sosis - 2014 - Philosophical Psychology 27 (5):681-702.
    Several influential psychologists have attempted to estimate to what extent human happiness levels are directly controlled by genes by comparing the happiness levels of identical twins raised apart. If we discover that the happiness levels of identical twins raised apart tend to be closer than the happiness levels of fraternal twins raised apart, this is taken as evidence that average happiness levels are largely controlled by genes. However, if it turns out that identical twins' happiness levels tend to be substantially (...)
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  38. Bioethics Methods in the Ethical, Legal, and Social Implications of the Human Genome Project Literature.Rebecca L. Walker & Clair Morrissey - 2014 - Bioethics 28 (9):481-490.
    While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample (...)
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  39. Erratum To: Neither Property Right nor Heroic Gift, Neither Sacrifice nor Aporia: The Benefit of the Theoretical Lens of Sharing in Donation Ethics.Kristin Zeiler - 2014 - Medicine, Health Care and Philosophy 17 (2):321-321.
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  40. Social Epigenetics and Equality of Opportunity.Michele Loi, Lorenzo Del Savio & Elia Stupka - 2013 - Public Health Ethics 6 (2):142-153.
    Recent epidemiological reports of associations between socioeconomic status and epigenetic markers that predict vulnerability to diseases are bringing to light substantial biological effects of social inequalities. Here, we start the discussion of the moral consequences of these findings. We firstly highlight their explanatory importance in the context of the research program on the Developmental Origins of Health and Disease (DOHaD) and the social determinants of health. In the second section, we review some theories of the moral status of health inequalities. (...)
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  41. Bioquestions and the Mechanical Answer.Didier Newman (ed.) - 2013 - CreateSpace.
    This is a book of questions, some of which are funny whereas many others are more serious, puzzling and disturbing. A different book in which biology is used as a foundation to build a down-to-earth narrative, in the hope of addressing all basic human concerns from a modern, casual and holistic perspective. Thus, an excellent book to question life and death, religions and philosophies, the self and the universe, technology and knowledge, love and sorrow, and so on; in short, questioning (...)
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  42. From Sharing a Background to Sharing One's Presence.Ulla Schmid - 2013 - In Michael Schmitz, Beatrice Kobow & Hans Bernhard Schmid (eds.), The Background of Social Reality. Springer. pp. 147--162.
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  43. Demystifying Biobanks Reply.Tom Tomlinson - 2013 - Hastings Center Report 43 (5):5-6.
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  44. Identità e determinismo genetico. Bioetica e filosofia delle scienze genetiche.Gregory Tranchesi - 2013 - Edizioni Nuova Prhomos.
  45. It’s About Scientific Secrecy, Dummy: A Better Equilibrium Among Genomics Patenting, Scientific Research and Health Care. [REVIEW]Miriam Bentwich - 2012 - Science and Engineering Ethics 18 (2):263-284.
    This paper offers a different pragmatic and patent-based approach to concerns regarding the negative effects of genetic-based patenting on advancing scientific research and providing adequate and accessible health care services. At the basis of this approach lies an explication of a mandatory provisional patented paper procedure (PPPA), designed for genetic-based patents and administered by leading scientific journals in the field, while officially acknowledged by the USPTO, and subsequently by other patent offices as well. It is argued that the uniqueness of (...)
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  46. Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives.Ben Chan, Flavia M. Facio, Haley Eidem, Sara Chandros Hull, Leslie G. Biesecker & Benjamin E. Berkman - 2012 - American Journal of Bioethics 12 (10):1-8.
    Whole-genome analysis and whole-exome analysis generate many more clinically actionable findings than traditional targeted genetic analysis. These findings may be relevant to research participants themselves as well as for members of their families. Though researchers performing genomic analyses are likely to find medically significant genetic variations for nearly every research participant, what they will find for any given participant is unpredictable. The ubiquity and diversity of these findings complicate questions about disclosing individual genetic test results. We outline an approach for (...)
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  47. From UNESCO's Declaration to National Law: Challenges of Legislating Community Benefit-Sharing of Genetic Research.Chen Chung-Lin - 2012 - Asian Bioethics Review 4 (2):90-101.
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  48. Genomic Sovereignty and the African Promise: Mining the African Genome for the Benefit of Africa.Jantina de Vries & Michael Pepper - 2012 - Journal of Medical Ethics 38 (8):474-478.
    Scientific interest in genomics in Africa is on the rise with a number of funding initiatives aimed specifically at supporting research in this area. Genomics research on material of African origin raises a number of important ethical issues. A prominent concern relates to sample export, which is increasingly seen by researchers and ethics committees across the continent as being problematic. The concept of genomic sovereignty proposes that unique patterns of genomic variation can be found in human populations, and that these (...)
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  49. Bioethics: All That Matters.Donna Dickenson - 2012 - London: Hodder.
    Should we do whatever science lets us do? This short introduction in the 'All That Matters' series shows how developments in biotechnology, such as genetics, stem cell research and artificial reproduction, arouse both our greatest hopes and our greatest fears. Many people invest the new biotechnology with all the aspirations and faith once accorded to religious salvation. But does everyone benefit equally from scientific progress? This book argues that although we've entered new scientific territory, there is no need to jettison (...)
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  50. The Politics of Representation in the Governance of Emergent 'Secondary Use' Biobanks: The Case of Dried Blood Spot Cards in the Netherlands.Conor Douglas, Carla van El, Maud Radstake, Sarah van Teeffelen & Martina C. Cornel - 2012 - Studies in Ethics, Law, and Technology 6 (1).
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