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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. Pre-Existing Conditions: Genetic Testing, Causation and the Justice of Medical Insurance.Robert Pennock - manuscript
    In Rosamond Rhodes, Leslie Francis & Anita Silvers (eds.) Blackwell Guide to Medical Ethics. (Ch. 23, pp. 407-424, 2006).
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  2. International Aspects of Genetic Discrimination in Human Genome Research and Society.P. R. Billings - forthcoming - Proceedings of the Second International Bioethics Seminar.
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  3. Genetic Screening: Ethical Issues.Nuffield Council On Bioethics - forthcoming - Nuffield Bioethics, Uk.
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  4. Expanding Newborn Screening.Jeffreyr Botkin & Preventiveservices Ta Skforce - forthcoming - Hastings Center Report.
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  5. Privacy, the Individual and Genetic Information: A Buddhist Perspective.Ts Champlin - forthcoming - Bioethics.
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  6. 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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  7. The Role of Sentinel Lymph Node Biopsy in Breast Cancer Diagnosis.N. Dordevic, S. Filipovic & M. Pesic - forthcoming - Facta Universitatis, Series: Linguistics and Literature.
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  8. Incidental Findings of Uncertain Significance: To Know or Not to Know - That is Not the Question.Bjørn Hofmann - forthcoming - Most Recent Articles: Bmc Medical Ethics.
    Although the “right not to know” is well established in international regulations, it has been heavily debated. Ubiquitous results from extended exome and genome analysis have challenged the right not to know...
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  9. 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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  10. F12. Background of the Proposed Guidelines for Genetic Counselling and Testing in Japan.Ichiro Matsuda - forthcoming - Bioethics in Asia: The Proceedings of the Unesco Asian Bioethics Conference (Abc'97) and the Who-Assisted Satellite Symposium on Medical Genetics Services, 3-8 Nov, 1997 in Kobe/Fukui, Japan, 3rd Murs Japan International Symposium, 2nd Congress of the Asi.
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  11. Every Child is Priceless: Debating Effective Newborn Screening Policy.Virginia Moyer, Ned A. Calonge, Steven M. Teutsch & Jeffrey Botkin - forthcoming - Hastings Center Report.
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  12. Population Screening.Ainsley J. Newson & A. Dawson - forthcoming - Public Health Ethics. Key Concepts and Issues in Policy and Practice:118--42.
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  13. ""6.6. The Visual Transcription of" Family Disease": A Comparison of the Use of Medical Pedigrees in Canadian & Japanese Genetic Counselling Practices. [REVIEW]Yoshio Nukaga - forthcoming - Bioethics in Asia: The Proceedings of the Unesco Asian Bioethics Conference (Abc'97) and the Who-Assisted Satellite Symposium on Medical Genetics Services, 3-8 Nov, 1997 in Kobe/Fukui, Japan, 3rd Murs Japan International Symposium, 2nd Congress of the Asi.
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  14. 6.7. Ethical Issues on the Provision of Genetic Services to the Asian Population of New York City.Victor B. Penchaszadeh & Diana PuZales-Morejon - forthcoming - Bioethics in Asia: The Proceedings of the Unesco Asian Bioethics Conference (Abc'97) and the Who-Assisted Satellite Symposium on Medical Genetics Services, 3-8 Nov, 1997 in Kobe/Fukui, Japan, 3rd Murs Japan International Symposium, 2nd Congress of the Asi.
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  15. Presymptomatic Genetic Testing in Children.Kimberly A. Quaid - forthcoming - Pediatric Bioethics.
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  16. F25. The Present State of and Issues Concerning Preimplantation Diagnosis.Kaoru Suzumori - forthcoming - Bioethics in Asia: The Proceedings of the Unesco Asian Bioethics Conference (Abc'97) and the Who-Assisted Satellite Symposium on Medical Genetics Services, 3-8 Nov, 1997 in Kobe/Fukui, Japan, 3rd Murs Japan International Symposium, 2nd Congress of the Asi.
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  17. Multiplex Genetic Testing.American Medical Association The Council on Ethical and Judicial Affairs - forthcoming - Hastings Center Report.
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  18. F14. Panel Discussion on Medical Genetic Services and Bioethic Trends in Different Countries.Ishwar C. Verma - forthcoming - Bioethics in Asia: The Proceedings of the Unesco Asian Bioethics Conference (Abc'97) and the Who-Assisted Satellite Symposium on Medical Genetics Services, 3-8 Nov, 1997 in Kobe/Fukui, Japan, 3rd Murs Japan International Symposium, 2nd Congress of the Asi.
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  19. 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 11 (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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  20. The Trust Game CRISPR for Human Germline Editing Unsettles Scientists and Society.Matthias Braun & Darian Meacham - 2019 - EMBO Reports 20 (2).
  21. Uncertainty: How It Makes Science Advance.Kostas Kampourakis & Kevin McCain - 2019 - Oxford University Press.
    Scientific knowledge is the most solid and robust kind of knowledge that humans have because of its inherent self-correcting character. Nevertheless, anti-evolutionists, climate denialists, and anti-vaxxers, among others, question some of the best-established scientific findings, making claims unsupported by empirical evidence. A common aspect of these claims is reference to the uncertainties of science concerning evolution, climate change, vaccination, and so on. This is inaccurate: whereas the broad picture is clear, there will always exist uncertainties about the details of the (...)
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  22. 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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  23. Should Parents Genetically Engineer Their Children?Walter Veit - 2019 - Psychology Today.
    Imagine a world where everyone is healthy, intelligent, long living and happy. Intuitively this seems wonderful, albeit unrealistic. However, recent scientific developments in genetic engineering, namely CRISPR/Cas bring the question into public discourse, how the genetic enhancement of humans should be evaluated morally.
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  24. 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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  25. 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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  26. Review of Colin Farrelly, Genetic Ethics. [REVIEW]Jonathan Anomaly - 2018 - Notre Dame Philosophical Reviews:X-Y.
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  27. 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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  28. 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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  29. Procreative Beneficence and Genetic Enhancement.Walter Veit - 2018 - Kriterion - Journal of Philosophy 32 (1):75-92.
    Imagine a world where everyone is healthy, intelligent, long living and happy. Intuitively this seems wonderful albeit unrealistic. However, recent scienti c breakthroughs in genetic engineering, namely CRISPR/Cas bring the question into public discourse, how the genetic enhancement of humans should be evaluated morally. In 2001, when preimplantation genetic diagnosis (PGD) and in vitro fertilisation (IVF), enabled parents to select between multiple embryos, Julian Savulescu introduced the principle of procreative bene cence (PPB), stating that parents have the obligations to choose (...)
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  30. Dr. Pangloss's Clinic: Prenatal Whole Genome Sequencing and a Return to Reality.Megan Allyse, James P. Evans & Marsha Michie - 2017 - American Journal of Bioethics 17 (1):21-23.
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  31. Concerns About Justification for Fetal Genome Sequencing.Jeffrey R. Botkin, Leslie P. Francis & Nancy C. Rose - 2017 - American Journal of Bioethics 17 (1):23-25.
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  32. Prenatal Whole Genome Sequencing: An Argument for Professional Self-Regulation.Benjamin E. Berkman & Michelle Bayefsky - 2017 - American Journal of Bioethics 17 (1):26-28.
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  33. Noninvasive Prenatal Whole-Genome Sequencing: A Solution in Search of a Problem.Chris Kaposy - 2017 - American Journal of Bioethics 17 (1):42-44.
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  34. Resisting Paternalism in Prenatal Whole-Genome Sequencing.Rosamond Rhodes - 2017 - American Journal of Bioethics 17 (1):35-37.
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  35. 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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  36. Eugenics in Philosophy.Robert A. Wilson - 2017 - Oxford Bibliographies Online.
    Annotated bibliography on eugenics and philosophy.
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  37. Ethical Aspects of a Predictive Test for Huntington’s Disease.P. L. Andersson, A. Petersen, C. Graff & A. -K. Edberg - 2016 - Nursing Ethics 23 (5):565-575.
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  38. The Right Not to Know Does Not Apply to HIV Testing.Roberto Andorno - 2016 - Journal of Medical Ethics 42 (2):104-105.
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  39. Personal Utility is Inherent to Direct-to-Consumer Genomic Testing.Matthew Wai Heng Chung & Joseph Chi Fung Ng - 2016 - Journal of Medical Ethics 42 (10):649-652.
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  40. What Can We Learn From Patients’ Ethical Thinking About the Right ‘Not to Know’ in Genomics? Lessons From Cancer Genetic Testing for Genetic Counselling.Lorraine Cowley - 2016 - Bioethics 30 (8):628-635.
    This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer. 50 were invited to participate. 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees’ experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as ‘common sense’; the idea (...)
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  41. Whole-Genome Sequencing and Disability in the NICU: Exploring Practical and Ethical Challenges.Michael J. Deem - 2016 - Pediatrics 137 (s1):S47-S55.
  42. Religion and Newborn Screening.Richard H. Dees & Jennifer M. Kwon - 2016 - American Journal of Bioethics 16 (1):20-21.
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  43. Eugenics and Mandatory Informed Prenatal Genetic Testing: A Unique Perspective From China.Vincent H. di ZhangNg, Zhaochen Wang, Xiaomei Zhai & Reidar K. Lie - 2016 - Developing World Bioethics 16 (2):107-115.
    The application of genetic technologies in China, especially in the area of prenatal genetic testing, is rapidly increasing in China. In the wealthy regions of China, prenatal genetic testing is already very widely adopted. We argue that the government should actively promote prenatal genetic testing to the poor areas of the country. In fact, the government should prioritize resources first to make prenatal genetic testing a standard routine care with an opt-out model in these area. Healthcare professions would be required (...)
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  44. 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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  45. The Ethics of Non-Consensual HIV Testing Are Not Substantively Different From the Ethics of Overriding the Right Not to Know a Test Result.Charles Foster - 2016 - Journal of Medical Ethics 42 (2):106-107.
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  46. No Panacea: Next-Gen Sequencing Will Not Mitigate Adoptees’ Lack of Genetic Family Health History.Stephanie M. Fullerton - 2016 - American Journal of Bioethics 16 (12):41-43.
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  47. Concerns About Genetic Testing for Schizophrenia Among Young Adults at Clinical High Risk for Psychosis.Ryan E. Lawrence, Phoebe Friesen, Gary Brucato, Ragy R. Girgis & Lisa Dixon - 2016 - Ajob Empirical Bioethics 7 (3):193-198.
    Background: Genetic tests for schizophrenia may introduce risks and benefits. Among young adults at clinical high risk for psychosis, little is known about their concerns and how they assess potential risks. Methods: We conducted semistructured interviews with 15 young adults at clinical high risk for psychosis to ask about their concerns. Results: Participants expressed concerns about test reliability, data interpretation, stigma, psychological harm, family planning, and privacy. Participants’ responses showed some departure from the ethics literature insofar as participants were primarily (...)
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  48. Unpacking Reasons for Genetic Testing of Adoptees.Richard M. Lee, Oh Myo Kim & Heewon Lee - 2016 - American Journal of Bioethics 16 (12):39-40.
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  49. 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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  50. A Right to Genetic Family History.Kyle Thomsen - 2016 - American Journal of Bioethics 16 (12):50-52.
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