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Summary Genetic testing is carried out for different purposes: diagnostic, predictive, and reproductive. Diagnostic testing is complementary to other diagnostic techniques, yet it raises issues of confidentiality, privacy, data security, accidental findings, the right not to know and the duty to communicate valuable information to genetically related relatives. Predictive and reproductive testing are even more problematic. Predictive testing may raise different issues at the individual and population level (screening). At both the individual and the population level, it raises the issues of voluntariness, informed consent, legislative protection against discrimination. Reproductive testing raises issues of eugenics, nondirectiveness in reproductive decisions, and reproductive rights. Inequalities in access to testing technology and genetic counselling raise issues of justice. Other questions concern genetic knowledge itself: when is a genetic test sufficiently sensitive and reliable, when are its results adequately interpreted, in order for the test to be made available to individuals, commercialised, or offered to the population at large by health care institutions.
Key works Doukas & Berg 2001 and Brock 2001 offer a good and influential discussion of the conflict between confidentiality and the duty to prevent harm when a genetic test subject refuses to disclose own genetic information which might be relevant to a relative and allow an third party to prevent severe harm to herself. Beckman 2004 analyzes genetic self-tests and argues that while misperceptions and misunderstandings of genetic information compromise autonomy, genetic information does not (even if it causes anxiety, distress, and loss of life hope). Vehmas 2001 discusses whether prospective parents ought to find out about their genetic constitution for reproductive reasons and defends the parental right not to know. Influentially, Rhodes 1998 argues that no one has the right to remain in ignorance. Takala 1999 and Takala & Häyry 2000 defend the right not to know against Rhodes' attack. Rebecca 2001 defends the right of the woman to reject prenatal genetic testing. Savulescu 2001 argues that couples or single reproducers have a prima facie moral duty to select the embryo with the best life prospects,  selecting against harmful genetic susceptibilities and in favor of beneficial ones.
Introductions Robertson & Savulescu 2001 MacDonald & Williams-Jones 2002
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  1. added 2020-04-14
    From Expectations to Experiences: Consumer Autonomy and Choice in Personal Genomic Testing.Jacqueline Savard, Chriselle Hickerton, Sylvia A. Metcalfe, Clara Gaff, Anna Middleton & Ainsley J. Newson - 2020 - Ajob Empirical Bioethics 20 (1):63-76.
    Background: Personal genomic testing (PGT) offers individuals genetic information about relationships, wellness, sporting ability, and health. PGT is increasingly accessible online, including in emerging markets such as Australia. Little is known about what consumers expect from these tests and whether their reflections on testing resonate with bioethics concepts such as autonomy. Methods: We report findings from focus groups and semi-structured interviews that explored attitudes to and experiences of PGT. Focus group participants had little experience with PGT, while interview participants had (...)
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  2. added 2020-03-26
    Abortion for Life-Limiting Foetal Anomaly: Beneficial When and for Whom?Helen Watt - 2017 - Clinical Ethics 12 (1):1 - 10.
    Abortion for life-limiting foetal anomaly is often an intensely painful choice for the parents; though widely offered and supported, it is surprisingly difficult to defend in ethical terms. Abortion on this ground is sometimes defended as foetal euthanasia but has features which sharply differentiate it from standard non-voluntary euthanasia, not least the fact that any suffering otherwise anticipated for the child may be neither severe nor prolonged. Such abortions may be said to reduce suffering for the family including siblings – (...)
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  3. added 2020-03-10
    Precision Medicine and Big Data: The Application of an Ethics Framework for Big Data in Health and Research.G. Owen Schaefer, E. Shyong Tai & Shirley Sun - 2019 - Asian Bioethics Review 11 (3):275-288.
    As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to (...)
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  4. added 2019-07-29
    A Neglected Ethical Issue in Citizen Science and DIY Biology.Lucie White - 2019 - American Journal of Bioethics 19 (8):46-48.
    Andrea Wiggins and John Wilbanks’ article (2019) presents us with a welcome overview of the neglected, novel ethical issues raised by the advent of citizen science in health and biomedical contexts. This contribution takes a rather different approach, focusing on a very specific (yet also overlooked) problem in this context - the ethical implications of self-administered genetic testing. This problem, however, is particularly illustrative of the “ethics gap” between traditional medical settings and new public-driven scientific practices, emphasized by Wiggins and (...)
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  5. added 2019-06-24
    Can Children and Young People Consent to Be Tested for Adult Onset Genetic Disorders.Donna Dickenson - 1999 - British Medical Journal 318:1063-1066.
    What should we do about children and young people who want to be tested for incurable, adult onset, genetic disorders? In particular, what should a general practitioner do if he or she believes the young person is competent to decide, but the regional genetics unit refuses to test anyone under 18? In this article I discuss such a case (drawn from actual practice, but anonymised), and consider the arguments for and against allowing the young person to be tested in terms (...)
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  6. added 2019-06-20
    Ethical Issues in Pre-Cancer Testing: The Parallel with Huntington's Disease.Donna L. Dickenson - 2002 - In Bill Fulford, Donna Dickenson & Thomas Murray Murray (eds.), Healthcare Ethics and Human Values: An Introductory Text with Readings and Case Studies. Oxford: Blackwell. pp. 97-100.
    This chapter considers ethical issues involved in genetic testing and screening for susceptibility to various forms of cancer.
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  7. added 2019-06-17
    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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  8. added 2019-06-17
    Introduction to the Article Collection ‘Translation in Healthcare: Ethical, Legal, and Social Implications’.Michael Morrison, Donna Dickenson & Sandra Soo-Jin Lee - 2016 - BMC Medical Ethics 17 (1):74.
    New technologies are transforming and reconfiguring the boundaries between patients, research participants and consumers, between research and clinical practice, and between public and private domains. From personalised medicine to big data and social media, these platforms facilitate new kinds of interactions, challenge longstanding understandings of privacy and consent, and raise fundamental questions about how the translational patient pathway should be organised.This editorial introduces the cross-journal article collection "Translation in healthcare: ethical, legal, and social implications", briefly outlining the genesis of the (...)
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  9. added 2019-06-17
    Me Medicine Vs. We Medicine: Reclaiming Biotechnology for the Common Good.Donna Dickenson - 2013 - New York, USA: Columbia University Press.
    Even in the increasingly individualized American medical system, advocates of 'personalized medicine' claim that healthcare isn't individualized enough. With the additional glamour of new biotechnologies such as genetic testing and pharmacogenetics behind it, 'Me Medicine'-- personalized or stratified medicine-- appears to its advocates as the inevitable and desirable way of the future. Drawing on an extensive evidence base, this book examines whether these claims are justified. It goes on to examine an alternative tradition rooted in communitarian ideals, that of the (...)
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  10. added 2019-06-17
    Personalized Genetic Medicine: Present Reality, Future Prospects.Donna Dickenson - 2013 - In Sheldon Krimsky & Jeremy Gruber (eds.), Biotechnology in Our Lives. Skyhorse Publishing.
    The soaring promises made by personalized genetic medicine advocates are probably loftier than those in any other medical or scientific realm today. Are they justified?
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  11. added 2019-06-17
    It's All About Me.Donna Dickenson - 2013 - New Scientist 2934.
    The growth of personalised medicine threatens the communal approach that has brought our biggest health gains.
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  12. added 2019-06-15
    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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  13. added 2019-06-14
    Testing Times for the Consumer Genetics Revolution.Donna Dickenson - 2014 - The New Scientist 221 (2251):26-27.
    With the highest profile seller of $99 genetic tests under fire, will public trust in personalised medicine suffer?
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  14. added 2019-06-13
    Ethical Qualms About Genetic Prognosis.Donna Dickenson - 2016 - Canadian Medical Association Journal 188 (6):1-2.
    The debate about direct-to-consumer genetic testing has centred on whether consumers are the best judges of their own clinical care. Inthis article, I also examine whether the science of personalized medicine is really as advanced as its proponents claim, and how the availability of genetic markers affects decisions on who gets and does not get medical treatment.
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  15. added 2019-06-06
    ‘A Crisis Of Compassion: Who Cares?’: Battle of Ideas, 20–21 October 2012, London.Bríd Hehir - 2013 - Nursing Ethics 20 (1):109-114.
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  16. added 2019-06-06
    Genetic Diaspora, Genetic Return. [REVIEW]Petter Hellström - 2013 - Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 44 (3):439-442.
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  17. added 2019-06-06
    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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  18. added 2019-06-06
    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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  19. added 2019-06-06
    Ruth Schwartz Cowan, Heredity and Hope: The Case for Genetic Screening. Cambridge, MA and London: Harvard University Press, 2008. Pp. 292. ISBN 978-0-674-02424-3. £20.95 .S. Peter Harper, A Short History of Medical Genetics. Oxford: Oxford University Press, 2008. Pp. Ix+557. ISBN 978-0-19-518750-2. £22.99. [REVIEW]John Pickstone - 2010 - British Journal for the History of Science 43 (2):317-319.
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  20. added 2019-06-06
    The Single Equality Bill: A Missed Opportunity to Legislate on Genetic Discrimination?Ruth H. Wilkinson - 2009 - Law and Ethics of Human Rights 3 (1).
    In this paper I consider the recent review of the discrimination law of England and Wales. The Discrimination Law Review published its final report, "Framework for a Fairer Future," in 2008. The report advocated a complete overhaul of the discrimination law in England and Wales, creating a single duty to promote equality. Although many of the consultees had argued that genetic discrimination should be included in the grounds of discrimination, the Discrimination Law Review team and the government have since decided (...)
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  21. added 2019-06-06
    Choosing Children: Genes, Disability, and Design.Jonathan Glover - 2008 - Oxford University Press UK.
    Progress in genetic and reproductive technology now offers us the possibility of choosing what kinds of children we do and don't have. Should we welcome this power, or should we fear its implications? There is no ethical question more urgent than this: we may be at a turning-point in the history of humanity. The renowned moral philosopher and best-selling author Jonathan Glover shows us how we might try to answer this question, and other provoking and disturbing questions to which it (...)
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  22. added 2019-06-06
    Right Problem, Wrong Solution: A Pro-Choice Response to “Expressivist” Concerns About Preimplantation Genetic Diagnosis.Colin Gavaghan - 2007 - Cambridge Quarterly of Healthcare Ethics 16 (1):20-34.
    In August 2005, the United Kingdom's Human Fertilisation & Embryology Authority launched a public consultation, seeking views on the use of preimplantation genetic diagnosis for the detection of cancer genes. The issue was considered by the Authority to be a possible source of particular controversy because it involved extending the range of conditions for which PGD can be licensed in a potentially important way: As well as testing for genes that would definitely cause disease traits, such as cystic fibrosis and (...)
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  23. added 2019-06-06
    The Space in Between: Narratives of Silence and Genetic Terminations: Discussioncoping with Genetic Termination.Angela Thachuk - 2007 - Bioethics 21 (9):511-514.
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  24. added 2019-06-06
    Why Shouldn’T Insurance Companies Know Your Genetic Information?Neil A. Manson - 2007 - Journal of Philosophical Research 32 (Supplement):345-356.
    In this paper I state and reject two of the most commonly given arguments for regulating access by insurance companies to the results of genetic tests. I then argue that since we cannot assume a priori that those genetically predisposed to disease will have worse health outcomes than those not so disposed, we cannot know a priori that genetic discrimination will emerge as a major problem in a free market health insurance system. Finally, I explore the possibility of a free-market (...)
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  25. added 2019-06-06
    Should Children and Adolescents Be Tested for Huntington’s Disease? Attitudes of Future Lawyer.Bernice S. Elger & Timothy W. Harding - 2006 - Bioethics 20 (3):158-167.
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  26. added 2019-06-06
    Pragmatic Approaches to Genetic Screening.Pierre Mallia & Henk ten Have - 2004 - Medicine, Health Care and Philosophy 8 (1):69-77.
    Pragmatic approaches to genetic testing are discussed and appraised. Whilst there are various schools of pragmatism, the Deweyan appraoch seems to be the most appreciated in bioethics as it allows a historical approach indebted to Hegel. This in turn allows the pragmatist to specify and balance principles in various contexts. There are problems with where to draw a line between what is referred to here as the micro- and macro-level of doing bioethics, unless one is simply to be classified as (...)
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  27. added 2019-06-06
    Genetic Privacy: A Challenge to Medico-Legal Norms: G Laurie. Cambridge University Press, 2002, 50.00 (Hbk), Pp 335. ISBN 0521660270. [REVIEW]D. Dickenson - 2003 - Journal of Medical Ethics 29 (6):373-374.
    Review of Graeme Laurie, Genetic Privacy.
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  28. added 2019-06-06
    Solidarity, Genetic Discrimination, and Insurance: A Defense of Weak Genetic Exceptionalism.Veikko Launis - 2003 - Social Theory and Practice 29 (1):87-111.
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  29. added 2019-06-06
    Genetic Information: Acquisition, Access, and Control: Edited by Alison K Thompson and Ruth F Chadwick, New York, Kluwer Academic/Plenum Publishers, 1999, 348 Pages, $115 (Hc). [REVIEW]Lenore Abramsky - 2001 - Journal of Medical Ethics 27 (3):213-214.
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  30. added 2019-06-06
    Genetics and Insurance: Accessing and Using Private Information*: A. M. CAPRON.A. M. Capron - 2000 - Social Philosophy and Policy 17 (2):235-275.
    Is information about a person's genome, whether derived from the analysis of DNA or otherwise, protected by the right to privacy? If it is, why and in what manner? It often appears that some people believe that the answer to this question is to be found in molecular genetics itself. They point to the rapid progress being made in basic and applied aspects of this field of biology; this progress has remarkably increased what is known about human genetics. Since knowledge (...)
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  31. added 2019-06-06
    Promoting Safe and Effective Genetic Testing in the United States. Final Report of the Task Force on Genetic Testing: Edited by Neil A Holtzmann and Michael S Watson, Baltimore, John Hopkins University Press, 1998, 186 Pages, Pound23.00 (Pb). [REVIEW]Alastair Kent - 2000 - Journal of Medical Ethics 26 (6):482-482.
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  32. added 2019-06-06
    The Impact of the Genetic Privacy Act on Medicine.Philip R. Reilly - 1995 - Journal of Law, Medicine and Ethics 23 (4):378-381.
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  33. added 2019-06-06
    The Attempt to Pass the Genetic Privacy Act in Maryland.Neil A. Holtzman - 1995 - Journal of Law, Medicine and Ethics 23 (4):367-370.
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  34. added 2019-06-05
    Report'A Crisis of Compassion: Who Cares?': Battle of Ideas, 20-21 October 2012, London.Bríd Hehir - 2013 - Nursing Ethics 20 (1):109-114.
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  35. added 2019-06-05
    The Challenge of Incidental Findings.Susan M. Wolf - 2008 - Journal of Law, Medicine and Ethics 36 (2):216-218.
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  36. added 2019-06-05
    Currents in Contemporary Ethics GINA, the ADA, and Genetic Discrimination in Employment.Mark A. Rothstein - 2008 - Journal of Law, Medicine and Ethics 36 (4):837-840.
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  37. added 2019-06-05
    Capital Report: Senate Passes Genetic Nondiscrimination Bill.Kathi E. Hanna - 2003 - Hastings Center Report 33 (6):8.
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  38. added 2019-06-05
    Capital Report: Keeping Genetic Information Under Wraps.Joseph Palca - 1997 - Hastings Center Report 27 (2):6.
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  39. added 2019-06-05
    At Law: Is a Genetic Screening Test Ready When the Lawyers Say It Is?George J. Annas - 1985 - Hastings Center Report 15 (6):16.
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  40. added 2019-06-05
    Case Studies in Bioethics: Nurturing a Defective Newborn.Richard M. Pauls & Eric J. Cassell - 1978 - Hastings Center Report 8 (1):13.
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  41. added 2019-06-05
    Pretesting for Huntington's Disease: Another View.Frank R. Freemon - 1973 - Hastings Center Report 3 (4):13.
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  42. added 2019-06-05
    Case Studies in Bioethics: Computerized Insurance Records.Paul S. Entmacher & Jeremiah S. Gutman - 1973 - Hastings Center Report 3 (5):8.
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  43. added 2019-05-30
    Genetische Analysen an ArbeitnehmernGenetic Testing in the Workplace.Dagmar Schmitz & Urban Wiesing - 2005 - Ethik in der Medizin 17 (2):114-126.
    ZusammenfassungDie Zulässigkeit genetischer Untersuchungen an Arbeitnehmern wird in Deutschland neu diskutiert, nachdem einer hessischen Lehrerin die Verbeamtung auf Probe zunächst verweigert wurde, weil ihr Vater an der Huntington-Krankheit leidet. Es soll untersucht werden, ob eine gesetzliche Regelung genetischer Untersuchungen in der Arbeitsmedizin wünschenswert ist und welche ethischen Maßstäbe dabei zu berücksichtigen wären. Gendiagnostische Untersuchungsverfahren im engeren Sinn finden noch keine breite Anwendung in der Arbeits- und Betriebsmedizin. Die Nutzung genetischer Informationen gehört aber auch hier zum Standard. Damit sind verschiedene ethische (...)
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  44. added 2019-05-17
    Oral Contraceptives and Breast Cancer. Report of the Committee on the Relationship Between Oral Contraceptives and Breast Cancer. Pp. 185. $24.95. [REVIEW]Peter Diggory - 1992 - Journal of Biosocial Science 24 (4):569-570.
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  45. added 2019-04-01
    Risks and Benefits, Testing and Screening, Cancer, Genes and Dollars.Eric Kodish - 1997 - Journal of Law, Medicine and Ethics 25 (4):252-255.
  46. added 2019-02-26
    The Trust Game CRISPR for Human Germline Editing Unsettles Scientists and Society.Matthias Braun & Darian Meacham - 2019 - EMBO Reports 20 (2).
  47. added 2019-01-31
    Review of Robert Klitzman, Am I My Genes? Confronting Fate and Family Secrets in the Age of Genetic Testing 1. [REVIEW]Sonia M. Suter - 2012 - American Journal of Bioethics 12 (10):52-53.
    The American Journal of Bioethics, Volume 12, Issue 10, Page 52-53, October 2012.
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  48. added 2018-12-14
    Review of Colin Farrelly, Genetic Ethics. [REVIEW]Jonathan Anomaly - 2018 - Notre Dame Philosophical Reviews:X-Y.
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  49. added 2018-12-03
    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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  50. added 2018-11-02
    Well-Being, Opportunity, and Selecting for Disability.Andrew Schroeder - 2018 - Journal of Ethics and Social Philosophy 14 (1).
    In this paper I look at the much-discussed case of disabled parents seeking to conceive disabled children. I argue that the permissibility of selecting for disability does not depend on the precise impact the disability will have on the child’s wellbeing. I then turn to an alternative analysis, which argues that the permissibility of selecting for disability depends on the impact that disability will have on the child’s future opportunities. Nearly all bioethicists who have approached the issue in this way (...)
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