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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. Bennett 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 & Savelescu 2001 MacDonald & Williams-Jones 2002
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  1. Sara Abiola & Inga Chernyak (2008). Recent Developments in Health Law. Journal of Law, Medicine and Ethics 36 (4):856-865.
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  2. Alethea Adair, Robyn Hyde-Lay, Edna Einsiedel & Timothy Caulfield (2009). Technology Assessment and Resource Allocation for Predictive Genetic Testing: A Study of the Perspectives of Canadian Genetic Health Care Providers. BMC Medical Ethics 10 (1):6-.
    BackgroundWith a growing number of genetic tests becoming available to the health and consumer markets, genetic health care providers in Canada are faced with the challenge of developing robust decision rules or guidelines to allocate a finite number of public resources. The objective of this study was to gain Canadian genetic health providers' perspectives on factors and criteria that influence and shape resource allocation decisions for publically funded predictive genetic testing in Canada.MethodsThe authors conducted semi-structured interviews with 16 senior lab (...)
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  3. Joseph S. Alper (1995). Does the ADA Provide Protection Against Discrimination on the Basis of Genotype? Journal of Law, Medicine and Ethics 23 (2):167-172.
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  4. George J. Annas, Leonard H. Glantz & Patricia A. Roche (1995). Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations. Journal of Law, Medicine and Ethics 23 (4):360-366.
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  5. Jennifer S. Bard (2011). When Public Health and Genetic Privacy Collide: Positive and Normative Theories Explaining How ACA's Expansion of Corporate Wellness Programs Conflicts with GINA's Privacy Rules. Journal of Law, Medicine and Ethics 39 (3):469-487.
    The Patient Protection and Affordable Care Act of 2010 (ACA) contains many provisions intended to increase access to and lower the cost of health care by adopting public health measures. One of these promotes the use of at-work wellness programs by both providing employers with grants to develop these programs and also increasing their ability to tie the price employees pay for health insurance for participating in these programs and meeting specific health goals. Yet despite ACA's specific alteration of three (...)
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  6. Ludvig Beckman (2004). Are Genetic Self-Tests Dangerous? Assessing the Commercialization of Genetic Testing in Terms of Personal Autonomy. Theoretical Medicine and Bioethics 25 (5-6):387-398.
    Should a growing market for genetic self-tests be welcomed or feared? From the point of view of personal autonomy the increasing availability of predictive health information seems promising. Yet it is frequently pointed out that genetic information about future health may cause anxiety, distress and even loss of life-hopes. In this article the argument that genetic self-tests undermine personal autonomy is assessed and criticized. I contend that opportunities for autonomous choice are not reduced by genetic information but by misperceptions and (...)
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  7. Jon Beckwith & Joseph S. Alper (1998). Reconsidering Genetic Antidiscrimination Legislation. Journal of Law, Medicine and Ethics 26 (3):205-210.
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  8. Rebecca Bennett (2001). Antenatal Genetic Testing and the Right to Remain in Ignorance. Theoretical Medicine and Bioethics 22 (5):461-471.
    As knowledge increases about the human genome,prenatal genetic testing will become cheaper,safer and more comprehensive. It is likelythat there will be a great deal of support formaking prenatal testing for a wide range ofgenetic disorders a routine part of antenatalcare. Such routine testing is necessarilycoercive in nature and does not involve thesame standard of consent as is required inother health care settings. This paper askswhether this level of coercion is ethicallyjustifiable in this case, or whether pregnantwomen have a right to (...)
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  9. Cheryl Berg & Kelly Fryer-Edwards (2008). The Ethical Challenges of Direct-to-Consumer Genetic Testing. Journal of Business Ethics 77 (1):17 - 31.
    Genetic testing is currently subject to little oversight, despite the significant ethical issues involved. Repeated recommendations for increased regulation of the genetic testing market have led to little progress in the policy arena. A 2005 Internet search identified 13 websites offering health-related genetic testing for direct purchase by the consumer. Further examination of these sites showed that overall, biotech companies are not providing enough information for consumers to make well-informed decisions; they are not consistently offering genetic counseling services; and some (...)
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  10. Margaret A. Berger (2006). The Impact of DNA Exonerations on the Criminal Justice System. Journal of Law, Medicine Ethics 34 (2):320-327.
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  11. Nancy Berlinger (2004). Genetic Testing After Breast Cancer Diagnosis: Implications for Physician-Patient Communications. Cambridge Quarterly of Healthcare Ethics 13 (04):417-419.
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  12. J. L. Bevan, J. N. Senn-Reeves, B. R. Inventor, S. M. Greiner, K. M. Mayer, M. T. Rivard & R. J. Hamilton (2012). Critical Social Theory Approach to Disclosure of Genomic Incidental Findings. Nursing Ethics 19 (6):819-828.
    Technology has expanded genomic research and the complexity of extracted gene-related information. Health-related genomic incidental findings pose new dilemmas for nurse researchers regarding the ethical application of disclosure to participants. Consequently, informed consent specific to incidental findings is recommended. Critical Social Theory is used as a guide in recognition of the changing meaning of informed consent and to serve as a framework to inform nursing of the ethical application of disclosure consent in genomic nursing research practices.
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  13. Frederick R. Bieber (2006). Turning Base Hits Into Earned Runs: Improving the Effectiveness of Forensic DNA Data Bank Programs. Journal of Law, Medicine Ethics 34 (2):222-233.
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  14. Robert H. Blank (1982). Public Policy Implications of Human Genetic Technology: Genetic Screening. Journal of Medicine and Philosophy 7 (4):355-374.
    As rapid advances in human genetic research are transferred into new areas of genetic technology, questions relatingto the use of these techniques will escalate. This paper examines some of the policy concerns surrounding recent developments in genetic screening. It discusses the impetus and implications of genetic screening in general, examines various applications, and analyzes the costs and benefits of screening programs currently in existence. Special emphasis is placed on whether or not screening should be considered a matter of public health (...)
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  15. Paula Boddington & Susan Hogben (2006). Working Up Policy: The Use of Specific Disease Exemplars in Formulating General Principles Governing Childhood Genetic Testing. [REVIEW] Health Care Analysis 14 (1):1-13.
    Non-therapeutic genetic testing in childhood presents a “myriad of ethical questions”; questions which are discussed and resolved in professional policy and position statements. In this paper we consider an underdiscussed but strongly influential feature of policy-making, the role of selective case and exemplar in the production of general recommendations. Our analysis, in the tradition of rhetoric and argumentation, examines the predominate use of three particular disease exemplar (Huntington’s disease, Tay-Sachs disease and sickle cell disease) to argue for or against particular (...)
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  16. Elisabeth Boetzkes (2001). Privacy, Property, and the Family in the Age of Genetic Testing: Observations From Transformative Feminism. Journal of Social Philosophy 32 (3):301–316.
  17. Yvonne Bombard, Kenneth Offit & Mark E. Robson (2012). Risks to Relatives in Genomic Research: A Duty to Warn? American Journal of Bioethics 12 (10):12-14.
    The American Journal of Bioethics, Volume 12, Issue 10, Page 12-14, October 2012.
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  18. Lisa Bortolotti (2012). The Relative Importance of Undesirable Truths. Medicine Healthcare and Philosophy (4):683-690.
    The right not to know is often defended on the basis of the principle of respect for personal autonomy. If I choose not to acquire personal information that impacts on my future prospects, such a choice should be respected, because I should be able to decide whether to access information about myself and how to use it. But, according to the incoherence objection to the right not to know in the context of genetic testing, the choice not to acquire genetic (...)
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  19. Jeffrey R. Botkin (1998). Ethical Issues and Practical Problems in Preimplantation Genetic Diagnosis. Journal of Law, Medicine and Ethics 26 (1):17-28.
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  20. A. Boyce & P. Borry (2009). Parental Authority, Future Autonomy, and Assessing Risks of Predictive Genetic Testing in Minors. Journal of Bioethical Inquiry 6 (3):379-385.
    The debate over the genetic testing of minors has developed into a major bioethical topic. Although several controversial questions remain unanswered, a degree of consensus has been reached regarding the policies on genetic testing of minors. Recently, several commentators have suggested that these policies are overly restrictive, too narrow in focus, and even in conflict with the limited empirical evidence that exists on this issue. We respond to these arguments in this paper, by first offering a clarification of three key (...)
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  21. Michael Boylan (2002). Genetic Testing. Cambridge Quarterly of Healthcare Ethics 11 (03):246-256.
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  22. Teresa Brady (1995). The Ethical Implications of the Human Genome Project for the Workplace. International Journal of Applied Philosophy 10 (1):47-56.
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  23. D. Brahams (1991). The Social Consequences of Genetic Testing. Journal of Medical Ethics 17 (2):106-107.
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  24. Annelien L. Bredenoord & Johannes Jm van Delden (2012). Disclosing Individual Genetic Research Results to Deceased Participants' Relatives by Means of a Qualified Disclosure Policy. American Journal of Bioethics 12 (10):10-12.
    The American Journal of Bioethics, Volume 12, Issue 10, Page 10-12, October 2012.
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  25. Baruch A. Brody (2002). Freedom and Responsibility in Genetic Testing. Social Philosophy and Policy 19 (2):343-359.
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  26. Eline M. Bunnik, Antina Jong, Niels Nijsingh & Guido M. W. R. Wert (2013). The New Genetics and Informed Consent: Differentiating Choice to Preserve Autonomy. Bioethics 27 (6):348-355.
    The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole-genome sequencing and micro-array based analysis enable genome-wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre-test information and achieving autonomous decision-making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by (...)
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  27. Eline Bunnik, A. Cecile Janssens & Maartje Schermer (2009). How Attitudes Research Contributes to Overoptimistic Expectations of Personal Genome Testing. American Journal of Bioethics 9 (6):23-25.
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  28. Shawneequa L. Callier (2012). Swabbing Students: Should Universities Be Allowed to Facilitate Educational DNA Testing? American Journal of Bioethics 12 (4):32-40.
    Recognizing the profound need for greater patient and provider familiarity with personalized genomic medicine, many university instructors are including personalized genotyping as part of their curricula. During seminars and lectures students run polymerase chain reactions on their own DNA or evaluate their experiences using direct-to-consumer genetic testing services subsidized by the university. By testing for genes that may influence behavioral or health-related traits, however, such as alcohol tolerance and cancer susceptibility, certain universities have stirred debate on the ethical concerns raised (...)
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  29. E. Campbell (2004). Attitudes of Healthcare Professionals and Parents Regarding Genetic Testing for Violent Traits in Childhood. Journal of Medical Ethics 30 (6):580-586.
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  30. Gregory Carey & Irving I. Gottesman (2006). Genes and Antisocial Behavior: Perceived Versus Real Threats to Jurisprudence. Journal of Law, Medicine Ethics 34 (2):342-351.
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  31. Ben Chan, Flavia M. Facio, Haley Eidem, Sara Chandros Hull, Leslie G. Biesecker & Benjamin E. Berkman (2012). Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives. 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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  32. Mildred K. Cho (2008). Understanding Incidental Findings in the Context of Genetics and Genomics. Journal of Law, Medicine and Ethics 36 (2):280-285.
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  33. David J. Christianson (2007). Disability Income Insurance: The Private Market and the Impact of Genetic Testing. Journal of Law, Medicine and Ethics 35 (s2):40-46.
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  34. Angus Clarke (2002). Clinical Ethical Reflections on Prenatal Diagnosis and Selective Abortion / Carlo Loots. Responsibility in Genetic Testing: Shared or Divided Between Professionals and Clients? In Chris Gastmans (ed.), Between Technology and Humanity: The Impact of Technology on Health Care Ethics. Leuven University Press.
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  35. E. W. Clayton (1997). Genetic Testing in Children. Journal of Medicine and Philosophy 22 (3):233-251.
    In this article, the author focuses on the allocation of decision-making authority between parents and physicians. She argues that parents should have substantial room to decide whether genetic testing is good for their child and that they may appropriately consider interests in addition to those of their child in making such choices. A physician, however, may refuse to act pursuant to parental views about testing, when in the physician's view, the parents' choices would pose a risk of significant harm to (...)
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  36. Ellen Wright Clayton (2008). Incidental Findings in Genetics Research Using Archived DNA. Journal of Law, Medicine and Ethics 36 (2):286-291.
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  37. Ellen Wright Clayton (2002). The Complex Relationship of Genetics, Groups, and Health: What It Means for Public Health. Journal of Law, Medicine and Ethics 30 (2):290-297.
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  38. Flora Colledge, Kirsten Persson, Bernice Elger & David Shaw (2014). Sample and Data Sharing Barriers in Biobanking: Consent, Committees, and Compromises. Annals of Diagnostic Pathology 18 (2):78-81.
    The ability to exchange samples and data is crucial for the rapidly growth of biobanking. However, sharing is based on the assumption that the donor has given consent to a given use of her or his sample. Biobanking stakeholders, therefore, must choose 1 of 3 options: obtain general consent enabling multiple future uses before taking a sample from the donor, try to obtain consent again before sharing a previously obtained sample, or look for a legally endorsed way to share a (...)
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  39. Gregory Costain & Anne S. Bassett (2012). The Ever-Evolving Concept of Clinical Significance and the Potential for Sins of Omission in Genetic Research. American Journal of Bioethics 12 (10):22-24.
    The American Journal of Bioethics, Volume 12, Issue 10, Page 22-24, October 2012.
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  40. John Davis (2008). Selecting Potential Children and Unconditional Parental Love. Bioethics 22 (5):258–268.
    For now, the best way to select a child's genes is to select a potential child who has those genes, using genetic testing and either selective abortion, sperm and egg donors, or selecting embryos for implantation. Some people even wish to select against genes that are only mildly undesirable, or to select for superior genes. I call this selection drift– the standard for acceptable children is creeping upwards. The President's Council on Bioethics and others have raised the parental <span class='Hi'>love</span> (...)
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  41. Bram De Jonge & Niels Louwaars (2009). The Diversity of Principles Underlying the Concept of Benefit Sharing. In Evanson C. Kamau & Gerd Winter (eds.), Genetic Resources, Traditional Knowledge and the Law: Solutions for Access and Benefit Sharing. Earthscan.
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  42. Inmaculada de Melo-Martín (2013). Sex Selection and the Procreative Liberty Framework. Kennedy Institute of Ethics Journal 23 (1):1-18.
    Although surprising to some proponents of sex selection for non-medical reasons (Dahl 2005), a considerable amount of critical debate has been raised by this practice (Blyth, Frith, and Crawshaw 2008; Dawson and Trounson 1996; Dickens 2002; Harris 2005; Heyd 2003; Holm 2004; Macklin 2010; Malpani 2002; McDougall 2005; Purdy 2007; Seavilleklein and Sherwin 2007; Steinbock 2002; Strange and Chadwick 2010; Wilkinson 2008). While abortion or infanticide has long been used as means of sex selection, a new technology—preimplantation genetic diagnosis (PGD)—has (...)
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  43. Inmaculada de Melo-Martín (2012). A Parental Duty to Use PGD: More Than We Bargained For? American Journal of Bioethics 12 (4):14-15.
    The American Journal of Bioethics, Volume 12, Issue 4, Page 14-15, April 2012.
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  44. Inmaculada de Melo-Martín (2006). Genetic Testing: The Appropriate Means for a Desired Goal? [REVIEW] Journal of Bioethical Inquiry 3 (3):167-177.
    Scientists, the medical profession, philosophers, social scientists, policy makers, and the public at large have been quick to embrace the accomplishments of genetic science. The enthusiasm for the new biotechnologies is not unrelated to their worthy goal. The belief that the new genetic technologies will help to decrease human suffering by improving the public’s health has been a significant influence in the acceptance of technologies such as genetic testing and screening. But accepting this end should not blind us to the (...)
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  45. Inmaculada de Melo-Martín (2004). On Our Obligation to Select the Best Children: A Reply to Savulescu. Bioethics 18 (1):72–83.
  46. Castaño de Restrepo, María Patricia, Romeo Casabona & Carlos María (eds.) (2004). Derecho, Genoma Humano y Biotecnología. Temis.
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  47. Kris Dierickx (2002). Ethical Aspects of Genetic Testing. In Chris Gastmans (ed.), Between Technology and Humanity: The Impact of Technology on Health Care Ethics. Leuven University Press.
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  48. John H. Dodge & David J. Christianson (2007). Genetic Testing and Disability Insurance: An Alternative Opinion. Journal of Law, Medicine and Ethics 35 (s2):33-35.
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  49. David J. Doukas & Jessica W. Berg (2001). The Family Covenant and Genetic Testing. American Journal of Bioethics 1 (3):2 – 10.
    The physician-patient relationship has changed over the last several decades, requiring a systematic reevaluation of the competing demands of patients, physicians, and families. In the era of genetic testing, using a model of patient care known as the family covenant may prove effective in accounting for these demands. The family covenant articulates the roles of the physician, patient, and the family prior to genetic testing, as the participants consensually define them. The initial agreement defines the boundaries of autonomy and benefit (...)
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  50. Rebecca Dresser (2009). Prenatal Testing and Disability: A Truce in the Culture Wars? Hastings Center Report 39 (3):7-8.
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