About this topic
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. Recent Developments in Health Law.Sara Abiola & Inga Chernyak - 2008 - Journal of Law, Medicine & Ethics 36 (4):856-865.
  2. 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]L. Abramsky - 2001 - Journal of Medical Ethics 27 (3):213-a-214.
  3. Technology Assessment and Resource Allocation for Predictive Genetic Testing: A Study of the Perspectives of Canadian Genetic Health Care Providers.Alethea Adair, Robyn Hyde-Lay, Edna Einsiedel & Timothy Caulfield - 2009 - BMC Medical Ethics 10 (1):6-.
    With 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. The authors conducted semi-structured interviews with 16 senior (...)
  4. Predictive Testing for Huntington Disease-Response.J. Adams - 1992 - Journal of Medical Ethics 18 (1):48-48.
  5. Confidentiality and Huntington's Chorea.J. Adams - 1990 - Journal of Medical Ethics 16 (4):196-199.
    A doctor has duties towards his patients of both confidentiality and veracity and at times these may conflict, as in the following case. A mother who has the symptoms of Huntington's chorea does not wish her daughters to know. The doctor must try to make her realise how valuable the information can be to the daughters, and thus obtain her consent to inform them. If the mother's consent cannot be obtained, then the doctor must tell the mother that he cannot (...)
  6. Is It Ethical to Deny Genetic Research Participants Individualised Results?P. Affleck - 2009 - Journal of Medical Ethics 35 (4):209-213.
  7. Genetic Counseling and Genetic Tests Ethical Challenges.Bereshneh Ah & Nejad As - 2015 - Journal of Clinical Research and Bioethics 6 (5).
  8. Ethical Considerations in the Prevention and Management of Genetic Disorders with Special Emphasis on Religious Considerations.Mohammed Ali Albar - 2002 - In Abu Bakar Abdul Majeed (ed.), Bioethics: Ethics in the Biotechnology Century. Institute of Islamic Understanding Malaysia.
  9. Attitudes of Rhode Island Primary Care Physicians Toward the Use of Genetic Testing for Breast Cancer.Frances M. Alexakos - 2003 - Dissertation, Salve Regina University
    Physicians currently consider genetic testing for breast cancer, especially the BRCA1 and BRCA2 tests, as problematic, because their predictive value, efficacy, and benefit to patients benefit vary greatly. Individual physicians are pressured by mounting patients demanding access to genetic testing. On the one hand, many patients believe that they have the right to know their future medical condition and that their physician is obligated to respond to this right. On the other hand, a number of physicians hesitate to offer genetic (...)
  10. Should We Genetically Test Everyone for Haemochromatosis?K. Allen & R. Williamson - 1999 - Journal of Medical Ethics 25 (2):209-214.
    The increasing availability of DNA-based diagnostic tests has raised issues about whether these should be applied to the population at large in order to identify, treat or prevent a range of diseases. DNA tests raise concerns in the community for several reasons. There is the possibility of stigmatisation and discrimination between those who test positive and those who don't. High-risk individuals may be identified for whom no proven effective intervention is possible, or conversely may test "positive" for a disease that (...)
  11. 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.
  12. The Double-Edged Helix Social Implications of Genetics in a Diverse Society.Joseph S. Alper - 2002
  13. Does the ADA Provide Protection Against Discrimination on the Basis of Genotype?Joseph S. Alper - 1995 - Journal of Law, Medicine & Ethics 23 (2):167-172.
  14. Distinguishing Genetic From Nongenetic Medical Tests: Some Implications for Antidiscrimination legislationRedundant Publication in Biomedical Sciences: Scientific Misconduct or Necessity?Joseph Alper & Jon Beckwith - 1998 - Science and Engineering Ethics 4:141-150.
    Genetic discrimination is becoming an increasingly important problem in the United States. Information acquired from genetic tests has been used by insurance companies to reject applications for insurance policies and to refuse payment for the treatment of illnesses. Numerous states and the United States Congress have passed or are considering passage of laws that would forbid such use of genetic information by health insurance companies. Here we argue that much of this legislation is severely flawed because of the difficulty in (...)
  15. Privacy Issues in Clinical Genomic Medicine, or Marcus Welby, M.D., Meets the $1000 Genome. [REVIEW]Sheri Alpert - 2008 - Cambridge Quarterly of Healthcare Ethics 17 (4):373-384.
    We have all heard a refrain much like this one over the last decade, increasingly so, as the cost of genetic sequencing has been drastically reduced with improvements in associated techniques and technologies. Already, discoveries are being made in laboratories that can help doctors determine from which drug a particular patient will receive the most efficacious treatment. The working presumption is that, eventually, individuals’ genetic sequence information will be included in each of their personal medical records.
  16. Genomic Incidental Findings: Reducing the Burden to Be Fair.Velizara Anastasova, Alessandro Blasimme, Sophie Julia & Anne Cambon-Thomsen - 2013 - American Journal of Bioethics 13 (2):52-54.
  17. Personal Narratives of Genetic Testing: Expectations, Emotions, and Impact on Self and Family.Emily E. Anderson & Katherine Wasson - 2015 - Narrative Inquiry in Bioethics 5 (3):229-235.
  18. After the Sequencing of the Human Genome: New Opportunities for Nurses Abound.G. Anderson - 2001 - Nursing Ethics 8 (5):473-474.
  19. Ethical Aspects of a Predictive Test for Huntingtons Disease: A Long Term Perspective.P. L. Andersson, A. Petersen, C. Graff & A. -K. Edberg - 2016 - Nursing Ethics 23 (5):565-575.
  20. Ethical Aspects of Undergoing a Predictive Genetic Testing for Huntington's Disease.Petra Lilja Andersson, Niklas Juth, Åsa Petersén, Caroline Graff & Anna-Karin Edberg - 2013 - Nursing Ethics 20 (2):189-199.
    The aim of this study was to describe the experiences of undergoing a presymptomatic genetic test for the hereditary and fatal Huntington’s disease, using a case study approach. The study was based on 18 interviews with a young woman and her husband from the decision to undergo the test, to receiving the results and trying to adapt to them, which were analysed using a life history approach. The findings show that the process of undergoing a presymptomatic test involves several closely (...)
  21. The Right Not to Know Does Not Apply to HIV Testing.Roberto Andorno - 2016 - Journal of Medical Ethics 42 (2):104-105.
  22. Dealing Drugs with the Bush.Rachel A. Ankeny - 2004 - Cambridge Quarterly of Healthcare Ethics 13 (3):241-244.
    The past year in bioethics in Australia has been relatively predictable. We continue to struggle with rising healthcare costs, though thankfully not on par with numerous other countries due to a relatively positive economic outlook. We are still fighting difficulties associated with higher medical indemnity costs, which have again caused many physicians to leave private practice, particularly in high-risk and specialty practice areas. In response, the federal government delayed the imposition of the medical indemnity levy for physicians until mid 2005. (...)
  23. Is a Genetic Screening Test Ready When the Lawyers Say It Is?George J. Annas - 1985 - Hastings Center Report 15 (6):16-18.
  24. Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations.George J. Annas, Leonard H. Glantz & Patricia A. Roche - 1995 - Journal of Law, Medicine & Ethics 23 (4):360-366.
  25. Models of Consent to Return of Incidental Findings in Genomic Research.Paul S. Appelbaum, Erik Parens, Cameron R. Waldman, Robert Klitzman, Abby Fyer, Josue Martinez, W. Nicholson Price & Wendy K. Chung - 2014 - Hastings Center Report 44 (4):22-32.
  26. Geneticization and Bioethics: Advancing Debate and Research. [REVIEW]Vilhjálmur Árnason & Stefán Hjörleifsson - 2007 - Medicine, Health Care and Philosophy 10 (4):417-431.
    In the present paper, we focus on the role that the concept of geneticization has played in the discussion about health care, bioethics and society. The concept is discussed and examples from the evolving discourse about geneticization are critically analyzed. The relationship between geneticization, medicalization and biomedicalization is described, emphasizing how debates about the latter concepts can inspire future research on geneticization. It is shown how recurrent themes from the media coverage of genetics portray typical traits of geneticization and thus (...)
  27. Ethical Issues Arising From Human Genetics.A. Arnold & R. Moseley - 1976 - Journal of Medical Ethics 2 (1):12-17.
    Advances in understanding genetic disorders have been rapid in the last few years and with them the need and desire for genetic counselling have grown. Almost simultaneously, particularly in the USA, several large screening programmes have been initiated to screen large numbers of people who may be carriers of such deleterious genes as those of Tay-Sachs disease and sickle cell anaemia. The authors of this paper, clinical medical students at University College Hospital, London, spent some time studying the ethical issues (...)
  28. Disclosure 'Downunder': Misadventures in Australian Genetic Privacy Law.B. Arnold & W. Bonython - 2014 - Journal of Medical Ethics 40 (3):168-172.
    Along with many jurisdictions, Australia is struggling with the unique issues raised by genetic information in the context of privacy laws and medical ethics. Although the consequences of disclosure of most private information are generally confined to individuals, disclosure of genetic information has far-reaching consequences, with a credible argument that genetic relatives have a right to know about potential medical conditions. In 2006, the Privacy Act was amended to permit disclosure of an individual's genetic information, without their consent, to genetic (...)
  29. Two Faces of Patient Advocacy: The Current Controversy in Newborn Screening.Cosby Arnold - 2014 - Journal of Medical Ethics 40 (8):558-562.
    Newborn screening programmes began in the 1960s, have traditionally been conducted without parental permission and have grown dramatically in the last decade. Whether these programmes serve patients’ best interests has recently become a point of controversy. Privacy advocates, concerned that newborn screening infringes upon individual liberties, are demanding fundamental changes to these programmes. These include parental permission and limiting the research on the blood samples obtained, an agenda at odds with the viewpoints of newborn screening advocates. This essay presents the (...)
  30. Monica Arruda is a Candidate for the BSN/MSN in the University of Penn-Sylvania School of Nursing and Senior Research Assistant in the Center for Bioethics at Penn. Her Previous Work has Focused on the Commercialization of Genetic Testing.Adrienne Asch, Erika Blacksher, David A. Buehler, Ellen L. Csikai, Francesco Demartis, Joseph J. Fins, Nina Glick Schiller, Mark J. Hanson, H. Eugene Hern Jr & Kenneth V. Iserson - 1998 - Cambridge Quarterly of Healthcare Ethics 7:7-8.
  31. 'Healthy' Human Embryos and Reproduction Making Embryos Healthy or Making Healthy Embryos: How Much of a Difference Between Prenatal Treatment and Selection?Adrienne Asch & David Wasserman - 2010 - In The 'Healthy' Embryo: Social, Biomedical, Legal and Philosophical Perspectives. pp. 201-18.
  32. Bach to the Future: Response To: Extending Preimplantation Genetic Diagnosis: Medical and Non-Medical Uses.R. Ashcroft - 2003 - Journal of Medical Ethics 29 (4):217-219.
    Professor Robertson sketches an elegant framework for policy evaluation and regulation of the use of preimplantation genetic diagnosis for various medical, medical related, and non-medical purposes. In criticism of his position, I argue that the distinction between policy and ethics upon which his argument relies is highly unstable, and the approach taken to ethical evaluation of particular parental interests leaves open many issues which the policy approach would hope to exclude. In conclusion I argue that while his position ultimately fails, (...)
  33. The Regulation of Preimplantation Genetic Diagnosis (PGD) in the Netherlands and the UK: A Comparative Study of the Regulatory Frameworks and Outcomes for PGD.E. C. A. Asscher - 2008 - Clinical Ethics 3 (4):176-179.
    Developments in biotechnology present difficult social and ethical challenges that need to be resolved by regulators among others. One crucial problem for regulators of new technologies is to ensure that regulation is both clear and sufficiently flexible to respond to new developments. This is particularly difficult to achieve in contentious fields such as medical biotechnology. In the European Union there is a divergence in the solutions to this problem which has lead to different regulatory frameworks for medical biotechnology. This paper (...)
  34. The Right Not to Know and Preimplantation Genetic Diagnosis for Huntington's Disease.E. Asscher & B.-J. Koops - 2010 - Journal of Medical Ethics 36 (1):30-33.
    The right not to know is underappreciated in policy-making. Despite its articulation in medical law and ethics, policy-makers too easily let other concerns override the right not to know. This observation is triggered by a recent decision of the Dutch government on embryo selection for Huntington’s disease. This is a monogenetic debilitating disease without cure, leading to death in early middle age, and thus is a likely candidate for preimplantation genetic diagnosis. People possibly affected with the Huntington gene do not (...)
  35. The Right Not to Know and Preimplantation Genetic Diagnosis for Huntington's Disease.Eva Asscher & Bert-Japp Koops - 2010 - Journal of Medical Ethics 36 (1):30-33.
  36. Personalized Genomic Educational Testing: What Do the Undergrads Think?Nicanor Pier Giorgio Austriaco - 2012 - American Journal of Bioethics 12 (4):43-45.
  37. A Psychoanalytic Qualitative Study of Subjective Life Experiences of Women With Breast Cancer.Elvin Aydin, Bahadir M. Gulluoglu & M. Kemal Kuscu - 2012 - Journal of Research Practice 8 (2):Article - M13.
    This article exemplifies research on the subjective life experiences of women with breast cancer, designed from a psychoanalytic perspective. Such research aims to reveal the subjective intrapsychic processes of women suffering from breast cancer, which can provide researchers and health care professionals with useful insight. Using Biographic narrative interpretative method, the study reveals some common denominators in the subjective life experiences of women with breast cancer. The study revealed that the subjects consider the diagnosis of breast cancer as one of (...)
  38. Not an Innocent Pursuit: The Politics of a 'Jewish' Genetic Signature.Katya Gibel Azoulay - 2003 - 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 (...)
  39. Genetic Prospects: Essays on Biotechnology, Ethics, and Public Policy.Harold W. Baillie, William A. Galston, Sara Goering, Deborah Hellman, Mark Sagoff, Paul B. Thompson, Robert Wachbroit, David T. Wasserman & Richard M. Zaner - 2003 - 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?
  40. Ethics, Evidence, and Cost in Newborn Screening.Baily Mary Ann & H. Murray Thomas - 2008 - Hastings Center Report 38 (3):23-31.
    When deciding what disorders to screen newborns for, we should be guided by evidence of real effectiveness, take opportunity cost into account, distribute costs and benefits fairly, and respect human rights. Current newborn screening policy does not meet these requirements.
  41. Every Child Is Priceless: Debating Effective Newborn Screening Policy Reply.Mary Ann Baily & Thomas H. Murray - 2009 - Hastings Center Report 39 (1):7-7.
  42. The Improbable Future of Employment‐Based Insurance.John D. Banja - 2000 - Hastings Center Report 30 (3):17-25.
  43. 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.Jennifer S. Bard - 2011 - Journal of Law, Medicine & 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 (...)
  44. Too Much Information?Michael J. Barry - 2012 - Hastings Center Report 42 (1):4-4.
  45. Genomic Testing and Genomic Care: Are They Talking to Each Other?Julian Barwell & Anirudh Kumar - 2015 - Journal of Clinical Research and Bioethics 6 (6).
  46. Demystifying D&O Insurance.Baxter Colin - 1995 - Oxford Journal of Legal Studies 15 (4):537-564.
  47. The Regulatory Gap for Preimplantation Genetic Diagnosis.Michelle Bayefsky - 2015 - Hastings Center Report 45 (1):7-8.
  48. Ethical Challenge by a New Technology: Teh Case of Molecular Genetic Diagnostics.Kurt Bayertz - 2001 - In Hans Lenk & Matthias Maring (eds.), Advances and Problems in the Philosophy of Technology. Lit. pp. 5--391.
  49. What's Special About Molecular Genetic Diagnostics?Kurt Bayertz - 1998 - 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 (...)
  50. "What's My DNA Worth, Anyway?" A Response to the Commercialization of Individuals' DNA Information.John C. Bear - 2004 - Perspectives in Biology and Medicine 47 (2):273-289.
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