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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. Nicanor Pier Giorgio Austriaco (2012). Personalized Genomic Educational Testing: What Do the Undergrads Think? American Journal of Bioethics 12 (4):43-45.
  6. Katya Gibel Azoulay (2003). Not an Innocent Pursuit: The Politics of a 'Jewish' Genetic Signature. Developing World Bioethics 3 (2):119–126.
    ABSTRACTThis commentary questions the presumption in genetic research that a biological connection exists between populations identified as Jewish. The author emphasises that identifying individuals as Jewish based on biological criteria is a sociological process that can draw attention away from other social mechanisms affecting identity construction. She also encourages critical consideration of the possible racialised thinking behind genetic anthropology studies, and the language used to express genetic findings. In conclusion, she calls for a radical cultural shift in the kind of (...)
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  7. Harold W. Baillie, William A. Galston, Sara Goering, Deborah Hellman, Mark Sagoff, Paul B. Thompson, Robert Wachbroit, David T. Wasserman & Richard M. Zaner (2003). Genetic Prospects: Essays on Biotechnology, Ethics, and Public Policy. Rowman & Littlefield Publishers.
    The essays in this volume apply philosophical analysis to address three kinds of questions: What are the implications of genetic science for our understanding of nature? What might it influence in our conception of human nature? What challenges does genetic science pose for specific issues of private conduct or public policy?
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  8. 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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  9. Kurt Bayertz (2001). Ethical Challenge by a New Technology: Teh Case of Molecular Genetic Diagnostics. In Hans Lenk & Matthias Maring (eds.), Advances and Problems in the Philosophy of Technology. Lit. 5--391.
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  10. Kurt Bayertz (1998). What's Special About Molecular Genetic Diagnostics? Journal of Medicine and Philosophy 23 (3):247 – 254.
    In its first part, this paper seeks to make plausible (a) that molecular genetic diagnostics differs in ethically relevant ways from traditional types of medical diagnostics and (b) that the consequences of introducing this technology in broad screening-programs to detect widespread genetic diseases in a population which is not at high risk may change our understanding of health and disease in a problematic way. In its second part, the paper discusses some aspects of public control of scientific and technological innovations (...)
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  11. 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.
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  12. Jon Beckwith & Joseph S. Alper (1998). Reconsidering Genetic Antidiscrimination Legislation. Journal of Law, Medicine and Ethics 26 (3):205-210.
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  13. Michael L. Begleiter (1991). Genetic Testing: For Whose Benefit is It Provided? Midwest Medical Ethics: A Publication of the Midwest Bioethics Center 8 (1):34-37.
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  14. Tierney Bennet (2002). Fundamental Problems and Solutions Concerning Genetic Testing (2nd Part). Alpha Omega 5 (3):473-497.
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  15. Tierney Bennet (2002). Fundamental Problems and Solutions Concerning Genetic Testing (First Part). Alpha Omega 5 (2):337-362.
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  16. 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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  17. 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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  18. Margaret A. Berger (2006). The Impact of DNA Exonerations on the Criminal Justice System. Journal of Law, Medicine Ethics 34 (2):320-327.
    One obvious result of DNA exonerations has been the enactment of legislation regulating postconviction DNA testing. But the impact on our criminal justice system goes beyond formal statutory change. The DNA exonerations are changing attitudes towards the death penalty, are focusing attention on how forensic laboratories operate, and are leading to the stricter scrutiny of forensic science.
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  19. Nancy Berlinger (2004). Genetic Testing After Breast Cancer Diagnosis: Implications for Physician-Patient Communications. Cambridge Quarterly of Healthcare Ethics 13 (04):417-419.
    In November 2003, researchers at Cambridge University announced they had identified a gene associated with an elevated risk of breast and related ovarian cancers. The gene—christened EMSY in honor of a breast-cancer nurse who is the sister of the study's lead author—is particularly significant because it is linked to so-called sporadic cancers. Such cancers do not arise from hereditary mutations of the BRCA1 and BRCA2 genes, in which genes that ordinarily prevent breast and ovarian cancers are altered, often giving rise (...)
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  20. 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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  21. 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.
    This manuscript provides an overview of forensic DNA data banks and their use, with some focus on existing programs established in the U.S., Canada, and the U.K. The intent is to provide a constructive analysis of both strengths and weaknesses in performance, and especially to suggest directions for improvement. Implementation of these suggestions will be crucial to allow DNA data banks to be most effective in advancing societal goals of enhancing public safety and collective security.
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  22. Barabara Biesecker (1998). Future Directions in Genetic Counseling: Practical and Ethical Considerations. Kennedy Institute of Ethics Journal 8 (2):145-160.
    : The accelerated discovery of gene mutations that lead to increased risk of disease has led to the rapid development of predictive genetic tests. These tests improve the accuracy of assigning risk, but at a time when intervention or prevention strategies are largely unproved. In coming years, however, data will become increasingly available to guide treatment of genetic diseases. Eventually genetic testing will be performed for common diseases as well as for rare genetic conditions. This will challenge genetic counseling practice. (...)
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  23. 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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  24. Alessandro Blasimme, Alexandra Soulier, Sophie Julia, Samantha Leonard & Anne Cambon-Thomsen (2012). Disclosing Results to Genomic Research Participants: Differences That Matter. American Journal of Bioethics 12 (10):20-22.
    The American Journal of Bioethics, Volume 12, Issue 10, Page 20-22, October 2012.
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  25. Gisela Bockenheimer-Lucius & Matthias Kettner (2000). Zur Darstellung Medizinethischer Probleme Im Fernsehen – Vorarbeiten Für Eine Rekonstruktionsanalyse Am Beispiel der Präimplantationsdiagnostik. Ethik in der Medizin 12 (3):154-170.
    Definition of the problem: Television has developed various forms for the presentation of issues on medical ethics. Our inquiry focuses on the textual, visual and musical elements that are used in two short television features on preimplantation genetic diagnosis. Arguments: We used the method of question-stimulated group discussion to reconstruct how an audience of persons interested in medical ethics perceives which moral problems are presented in the films and how the audience grounds its perceptions on determinate elements of the films. (...)
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  26. Paula Boddington & Susan Hogben, Working Up Policy : The Use of Specific Disease Exemplars in Formulating General Principles Governing Childhood Genetic Testing. [REVIEW]
    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 to argue for or against particular genetic tests . We discuss the influence these (...)
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  27. 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.
  28. 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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  29. A. R. Boon (1981). Antenatal Genetic Diagnosis in Newcastle: Experience of 1200 Requests. Journal of Biosocial Science 13 (1):81.
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  30. Pascal Borry, Mahsa Shabani & Heidi Carmen Howard (2013). Nonpropositional Content in Direct-to-Consumer Genetic Testing Advertisements. American Journal of Bioethics 13 (5):14-16.
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  31. 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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  32. 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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  33. 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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  34. Michael Boylan (2002). Genetic Testing. Cambridge Quarterly of Healthcare Ethics 11 (03):246-256.
    As one looks into the crystal ball concerning the future of medicine, what might be seen? One vision is of genetic testing being carried out by medical technicians and then, as a result of this analysis, patients will be given a diagnosis of what is wrong with them. Next, they will be given a list of courses of action based on the tests. Once the list is presented to the patient, then she will choose her treatment . Then a clinician (...)
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  35. 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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  36. D. Brahams (1991). The Social Consequences of Genetic Testing. Journal of Medical Ethics 17 (2):106-107.
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  37. 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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  38. Baruch A. Brody (2002). Freedom and Responsibility in Genetic Testing. Social Philosophy and Policy 19 (2):343-359.
    Public statements by various international groups emphasize that decisions to undergo genetic screening, either for disease-carrier status or for predisposition-to-disease status, and decisions about the use of the resulting information should be made voluntarily by the party to be screened. For example, the World Medical Association, in its Declaration on the Human Genome Project, says, “One should respect the will of persons screened and their right to decide about participation and about the use of the information obtained.” Giving this principle (...)
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  39. Isabelle Budin-Ljøsne (2012). A Review of Ethical Frameworks for the Disclosure of Individual Research Results in Population-Based Genetic and Genomic Research. [REVIEW] Research Ethics 8 (1):25-42.
    Individual research results from population-based genetic and genomic research are traditionally not disclosed to research participants. Current practices of non-disclosure are, however, being challenged by an increasing number of scientists, ethicists and policy-makers who make arguments in favour of disclosing at least individual results of potential health or lifestyle significance to research participants. Simultaneously, research participants are expressing greater interest in accessing their results. This article first provides an overview of main arguments for and against the disclosure of individual research (...)
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  40. 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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  41. 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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  42. Michael M. Burgess & Lori D'Agincourt-Canning (2001). Genetic Testing for Hereditary Disease: Attending to Relational Responsibility. Journal of Clinical Ethics 12 (4):361.
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  43. 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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  44. 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.
    Objectives: Although no genetic tests for violent behaviour are currently available, research is ongoing to isolate genes related to a propensity for violence. We explored the attitudes of parents and healthcare professionals toward behavioural genetic testing for violence.Design: The attitudes of healthcare professionals and the lay public about genetic testing of children were elicited for a range of conditions through interviews with healthcare professionals and focus groups with parents. All participants were informed that behavioural genetic testing was the only hypothetical (...)
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  45. Silvia Camporesi (2013). Bend It Like Beckham! The Ethics of Genetically Testing Children for Athletic Potential. Sport, Ethics and Philosophy 7 (2):175-185.
    The recent boom of direct-to-consumer (DTC) genetic tests, aimed at measuring children?s athletic potential, is the latest wave in the ?pre-professionalization? of children that has characterized, especially but not exclusively, the USA in the last 15 years or so. In this paper, I analyse the use of DTC genetic tests, sometimes coupled with more traditional methods of ?talent scouting?, to assess a child?s predisposition to athletic performance. I first discuss the scientific evidence at the basis of these tests, and the (...)
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  46. 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.
    Separating wheat from chaff in regard to the hyperbole surrounding media coverage about genes for violence, born killers, et cetera provides a launch pad for two experienced behavioral geneticists who have conducted research on aggression and crime with twins, families, and adoptees to provide an essay on the facts and limitations of current knowledge; they conclude that any current threats to jurisprudence lie in perception rather than in empirical facts.
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  47. Ruth Chadwick (2008). Genetic Testing and Screening. In Peter A. Singer & A. M. Viens (eds.), The Cambridge Textbook of Bioethics. Cambridge University Press. 160.
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  48. Ruth Chadwick (ed.) (1994). Ethics, Reproduction and Genetic Control. Routledge.
    In this revised edition with a new preface from the editor, leading scientists explain the nature and goals of `test tube' reproduction and genetic engineering, and their eugenic implications. In contrast to the Warnock report, the extended commentary considers the issues in the context of a social ethic rather than the individualist viewpoint.
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  49. Ruth Chadwick & Charles Ngwena (1995). The Human Genome Project, Predictive Testing and Insurance Contracts: Ethical and Legal Responses. [REVIEW] Res Publica 1 (2):115-129.
    The economic costs to the insurers of complementary routine genetic testing would outweigh the benefits. However, should testing technology in future be refined so as to produce a cheap and reliable test, there is no reason why insurers might not take up predictive testing as part of the normal underwriting process. It is this possibility which justifies formulating a pre-emptive policy. At the very least, there are reasons for promoting and protecting the welfare of the proposer so as to redress (...)
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  50. Ruth Chadwick, Henk ten Have, Rogeer Hoedemaekers, Jrgen Husted, Mairi Levitt, Tony McGleenan, Darren Shickle & Urban Wiesing (2001). Euroscreen 2: Towards Community Policy on Insurance, Commercialization and Public Awareness. Journal of Medicine and Philosophy 26 (3):263 – 272.
    The project Euroscreen 2 has examined genetic screening and testing with particular reference to implications for insurance, commercialization through marketing of genetic tests direct to the public, and issues surrounding raising public awareness of these and other developments in genetics, including the practical experiment of a Gene Shop. This paper provides a snapshot of the three year project. The study groups work included monitoring developments in different European countries and exploring possibilities for regulation in insurance and commercialization together with public (...)
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