In this issue of Journal of Medical Ethics, Pugh1 offers a pluralist justice-based argument in support of the spirit, if not the precise letter, of the UK approach to the use of genetic test results to underwrite life insurance. We agree with Dr Pugh’s general contention that there is ethical and philosophical support for curtailment of insurers’ access to, and use of, applicants’ GTR in underwriting. However, we disagree with the contention that broad revisionary implications of certain theories of justice (...) render them unpersuasive. In fact, despite the competing theories, the United Nations Universal Declaration on the Human Genome and Human Rights has already made a clear statement on this issue. Article 6 of the Declaration,2 unanimously adopted in 1997 by 77 countries, along with a resolution for its implementation,3 states, ‘No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.’ Further, Article 25 of the UN Convention on the Rights of Persons with Disabilities prohibits discrimination against persons with disabilities in the provision of life insurance. These statements are not contingent on the acceptability of the degree of revisionary implications. They are clear, unambiguous statements about the obligations of signatory countries. Despite this, few countries have taken steps commensurate with this expectation, possibly due to the scale of changes required for proper ratification. However, genetic discrimination is recognised as one …. (shrink)

The scope of noninvasive prenatal testing (NIPT) could expand in the future to include detailed analysis of the fetal genome. This will allow for the testing for virtually any trait with a genetic contribution, including “non-medical” traits. Here we discuss the potential use of NIPT for these traits. We outline a scenario which highlights possible inconsistencies with ethical decision-making. We then discuss the case against permitting these uses. The objections include practical problems; increasing inequities; increasing the burden of choice; negative (...) impacts on the child, family, and society; and issues with implementation. We then outline the case for permitting the use of NIPT for these traits. These include arguments for reproductive liberty and autonomy; questioning the labeling of traits as “non-medical”; and the principle of procreative beneficence. This summary of the case for and against can serve as a basis for the development of a consistent and coherent ethical framework. (shrink)

The scope of noninvasive prenatal testing (NIPT) could expand in the future to include detailed analysis of the fetal genome. This will allow for the testing for virtually any trait with a genetic contribution, including “non-medical” traits. Here we discuss the potential use of NIPT for these traits. We outline a scenario which highlights possible inconsistencies with ethical decision-making. We then discuss the case against permitting these uses. The objections include practical problems; increasing inequities; increasing the burden of choice; negative (...) impacts on the child, family, and society; and issues with implementation. We then outline the case for permitting the use of NIPT for these traits. These include arguments for reproductive liberty and autonomy; questioning the labeling of traits as “non-medical”; and the principle of procreative beneficence. This summary of the case for and against can serve as a basis for the development of a consistent and coherent ethical framework. (shrink)

Non-invasive prenatal testing is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21. However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is (...) limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems. (shrink)

Predictive genetic testing is now routinely offered to asymptomatic adults at risk for genetic disease. However, testing of minors at risk for adult-onset conditions, where no treatment or preventive intervention exists, has evoked greater controversy and inspired a debate spanning two decades. This review aims to provide a detailed longitudinal analysis and concludes by examining the debate's current status and prospects for the future. Fifty-three relevant theoretical papers published between 1990 and December 2010 were identified, and interpretative content analysis was (...) employed to catalogue discrete arguments within these papers. Novel conclusions were drawn from this review. While the debate's first voices were raised in opposition of testing and their arguments have retained currency over many years, arguments in favour of testing, which appeared sporadically at first, have gained momentum more recently. Most arguments on both sides are testable empirical claims, so far untested, rather than abstract ethical or philosophical positions. The dispute, therein, lies not so much in whether minors should be permitted to access predictive genetic testing but whether these empirical claims on the relative benefits or harms of testing should be assessed. (shrink)

Van de Poel argues that nuclear power should be treated as an ongoing social experiment that needs to be continuously monitored and evaluated. In his reports (2009; Jacobs, Van de Poel, & Os...

This article examines the issue of illicit drug control across three broad levels of analysis. On one level, it examines the nature of the response to a ‘global phenomenon’ and its impact on national sovereignty. On a second level, it considers emergent state forms and practices and their relationship to global changes; and, thirdly, it grounds the analysis temporally and empirically in the contemporary European Union. The complex, evolving and essentially fragmented character of state power is placed in the context (...) of the classic state functions of authority and control. This is set against the growing transnational role of expert knowledge in policy‐making, and concludes with an assessment of the political implications that can be drawn from analysis of this complex set of factors. (shrink)

The theory that AIDS originated from contaminated polio vaccines raises a number of challenging issues with ethical dimensions. The Journal of Medical Ethics dealt with a submission about the theory a decade ago; subsequent developments have raised further issues. Four areas of contention are addressed: whether the theory should be investigated; whether anyone should be blamed; whether defamation actions are appropriate, and whether the scientific community has a responsibility to examine unorthodox theories.

The International Committee of Medical Journal Editors is a working group of editors of selected medical journals that meets annually. Founded in Vancouver, Canada, in 1978, it currently consists of 11 member journals and a representative of the US National Library of Medicine. The major purpose of the Committee is to address and provide guidance for the conduct and publishing of biomedical research and the ethical tenets underpinning these activities. This advice is detailed in the Committee's Uniform Requirements for Manuscripts (...) Submitted to Biomedical Journals: Writing and Editing for Biomedical Publication . Recently, the ICMJE has adopted an interventionist role to ensure transparency of conflict of interest revelations in the conduct and publication of industry supported research. It also pursues a policy for the lodgement with trial registries of specified details of Phase III clinical trials. Failure to comply would jeopardise publication of trial outcomes in ICMJE member journals. This policy has resulted in the coming on stream of trial registries, international agreement on trial minimal datasets and compliance with trial registration requirements. (shrink)

Editorial independence is crucial for the viability of a journal and editors have many masters - the public, the readers, the authors and the owners. Negotiating the resultant minefield requires a purposeful and independent stance. This is particularly so in instances of a relatively modern phenomenon: concerted attempts by clinical groups to influence, or even abort, publication of articles, which may threaten their practice. Moreover, modern social media facilitates this manipulation.

Although universal schooling has been adopted as a goal by international organizations, bilateral aid agencies, national governments, and non-profit organizations, little sustained international attention has been devoted to the purposes or goals of universal education. What is universal primary and secondary education intended to accomplish? This book, which grew out of a project of the American Academy of Arts & Sciences, offers views from Asia, Africa, Europe, North America and South America on the purposes of universal education while considering diverse (...) cultures, religions, and professions. It is the first book in which renowned authors from around the world have proposed, considered, and debated goals of basic and secondary education, engaging in a constructive dialogue on one of the most pressing issues facing education today. (shrink)

I note with interest the Controversy regarding a baby born free of an inherited predisposition to early onset Alzheimer’s disease through the use of preimplantation genetic diagnosis .1,2 As the medical geneticist for the PGD programme for single gene disorders in Melbourne, Australia, I have seen many couples who have considered PGD for a wide range of genetic conditions. My observation is that many couples look to PGD for “milder” conditions and adult onset conditions for which they are not comfortable (...) to have traditional prenatal diagnosis and termination of pregnancy.An example of this is that in the last 11 years our unit has undertaken 13 prenatal diagnoses for Huntington’s disease from nine couples, whereas in the two years that we have been offering it we have had six requests for PGD for Huntington’s disease and three couples …. (shrink)

The commercialization of ‘big science’ is in full swing, leading to situations in which the ethical principles of academia are beginning to be compromised. This is exemplified by the profitable business of genetic ancestry testing. The goals of this sort of ‘big science’ are not necessarily in any way novel, however. In particular, large genotyping projects have a certain start‐up time when their design is frozen in, so that the projects often lag behind the development of genetic knowledge. On the (...) other hand, extremely provisional knowledge about potential disease markers is being rapidly turned into questionable ‘tests’, purporting to determine risk factors for complex disorders, by private companies that are eager to get their share of a profitable market of the future. The flow of money generated by such concerns looks likely to erode traditional research operations and small‐scale projects, which risk becoming pebbles on the ‘big science’ landscape. BioEssays 30:1246–1251, 2008. © 2008 Wiley Periodicals, Inc. (shrink)

Variant Creutzfeldt–Jakob disease is a fatal, transmissible, neurodegenerative disorder for which there is currently no effective treatment. vCJD arose from the zoonotic spread of bovine spongiform encephalopathy. There is now compelling evidence for human to human transmission through blood transfusions from presymptomatic carriers and experts are warning that the real epidemic may be yet to come. Imperatives exist for the development of reliable, non-invasive presymptomatic diagnostic tests. Research into such tests is well advanced. In this article the ethical implications of (...) the availability of these tests are elaborated and comparisons drawn with predictive genetic testing for Huntington’s disease and screening for HIV. Paramount to considerations is the issue of whom to test, weighing up respect for personal autonomy against obligations to benefit and protect society. A paradigm is proposed similar to that used for HIV screening but with unique features: compulsory testing of all blood/organ donors and individuals undergoing surgery or invasive procedures who have a significant risk of disease transmission. (shrink)

In today's business world, ethics is not simply a peripheral concern of executive boards or a set of supposed constraints on free enterprise. Ethics stands at the very core of our working lives and of society as a whole, defining the public image of the business community and the ways in which individual companies and people behave. What people do at work--and how they think about work--determines their attitudes and aspirations, affecting and even structuring their personal lives and habits. Working (...) from this premise, Honest Work: A Business Ethics Reader provides a practical overview of business ethics that concentrates on the ethical problems and dilemmas students are most likely to face in their prospective work environments. Classic and recent articles and cases cover a broad spectrum of issues and concerns--from private ethical dilemmas to larger considerations of corporate values--and propose guidelines for thinking about the business world in a moral context. Each reading and case is followed by lively questions for discussion. Offering a welcome alternative to the impersonal tone of most business ethics texts, the editors address students in an appealing and conversational manner. They provide engaging chapter introductions that include personal narratives and also present the ideas of great philosophers in a unique way--as emails. Ideal for introductory undergraduate and MBA courses in business ethics, Honest Work: A Business Ethics Reader can be read as a coherent narrative but also offers instructors great flexibility, as its various chapters, readings, and cases can be pursued in almost any order. A Companion Website featuring chapter objectives and summaries, study questions, self-tests, and off-site links of interest will soon be available. An Instructor's Manual with Test Bank is available to adopters. (shrink)

Tak Chan presents a hypothetical case where a child affected by trisomy 18 was conceived using in vitro fertilisation , and where the parents requested parentage testing.1 Chan argues that doctors are morally obliged to accede to requests for genetic testing to determine parentage provided that carrying out the test results in a low risk of child abandonment.1Although we also support providing genetic testing to determine parentage in the particular case described by Tak Chan, we are concerned about the implications (...) and practicalities of the proposed ‘risk of abandonment’ test for other parentage determination requests. We offer different arguments for why the parents should be assisted in their request in this particular circumstance.Genetic testing to determine parentage is widely available on a direct-to-consumer basis in many jurisdictions including Australia, and the involvement of a medical practitioner is not necessary to access the test. As Tak Chan points out, ordinarily there are few, if any, medical reasons for determining parentage. In the circumstances where one can envisage a medical reason, for example, to clarify recurrence risk for a genetic disorder in future children, this is generally achievable through specific genetic testing, rather than parentage determination.1 Parentage determination has …. (shrink)

This is the best collection of essays on Rorty’s philosophy that has been published in the last decade. It will be of great interest not only to Rorty specialists but to anyone concerned with the difficulties contemporary analytic philosophy faces in its search for a viable self-understanding. The contributors are Barry Allen, Akeel Bilgrami, Jacques Bouveresse, Robert Brandom, James Conant, Donald Davidson, Daniel Dennett, Jürgen Habermas, John McDowell, Hilary Putnam, Bjørn Ramberg, and Michael Williams. Rorty himself has also written an (...) essay, plus individual and fairly extensive replies to each of his critics. (shrink)

What are the most fundamental features of the world? Do minds stand outside the natural order? Is a unified picture of mental and physical reality possible? The Mind in Nature provides a staunchly realist account of the world as a unified system incorporating both the mental and the physical.

This book explores in detail the relation between ontology and ethics in the early work of Ludwig Wittgenstein, notably the _Tractatus Logico-Philosophicus_ and, to a lesser extent, the _Notebooks 1914-1916_. Self-contained and requiring no prior knowledge of Wittgenstein's thought, it is the first book-length argument that his views on ethics decisively shaped his ontological and semantic thought. The book's main thesis is twofold. It argues that the ontological theory of the _Tractatus_ is fundamentally dependent on its logical and linguistic doctrines: (...) the tractarian world is the world as it appears in language and thought. It also maintains that this interpretation of the ontology of the _Tractatus_ can be argued for not only on systematic grounds, but also via the contents of the ethical theory that it offers. Wittgenstein's views on ethics presuppose that language and thought are but one way in which we interact with reality. Although detailed studies of Wittgenstein's ontology and ethics exist, this book is the first thorough investigation of the relationship between them. As an introduction to Wittgenstein, it sheds new light on an important aspect of his early thought. (shrink)