Background: As genetics technology proceeds, practices of genetic testing have become more heterogeneous: many different types of tests are finding their way to the public in different settings and for a variety of purposes. This diversification is relevant to the discourse on ethical, legal and societal issues (ELSI) surrounding genetic testing, which must evolve to encompass these differences. One important development is the rise of personal genome testing on the basis of genetic profiling: the testing of multiple genetic variants simultaneously (...) for the prediction of common multifactorial diseases. Currently, an increasing number of companies are offering personal genome tests directly to consumers and are spurring ELSI-discussions, which stand in need of clarification. This paper presents a systematic approach to the ELSI-evaluation of personal genome testing for multifactorial diseases along the lines of its test characteristics.DiscussionThis paper addresses four test characteristics of personal genome testing: its being a non-targeted type of testing, its high analytical validity, low clinical validity and problematic clinical utility. These characteristics raise their own specific ELSI, for example: non-targeted genetic profiling poses serious problems for information provision and informed consent. Questions about the quantity and quality of the necessary information, as well as about moral responsibilities with regard to the provision of information are therefore becoming central themes within ELSI-discussions of personal genome testing. Further, the current low level of clinical validity of genetic profiles raises questions concerning societal risks and regulatory requirements, whereas simultaneously it causes traditional ELSI-issues of clinical genetics, such as psychological and health risks, discrimination, and stigmatization, to lose part of their relevance. Also, classic notions of clinical utility are challenged by the newer notion of 'personal utility.'SummaryConsideration of test characteristics is essential to any valuable discourse on the ELSI of personal genome testing for multifactorial diseases. Four key characteristics of the test - targeted/non-targeted testing, analytical validity, clinical validity and clinical utility - together determine the applicability and the relevance of ELSI to specific tests. The paper identifies and discusses four areas of interest for the ELSI-debate on personal genome testing: informational problems, risks, regulatory issues, and the notion of personal utility. (shrink)

Broad genome-wide testing is increasingly finding its way to the public through the online direct-to-consumer marketing of so-called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision-making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as it results in (...) relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical ‘mores’, uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice. (shrink)

In this paper we will show that Hempel's covering law model can't deal very well with explanations that are based on incomplete knowledge. In particular the symmetry thesis, which is an important aspect of the covering law model, turns out to be problematic for these explanations. We will discuss an example of an electric circuit, which clearly indicates that the symmetry of explanation and prediction does not always hold. It will be argued that an alternative logic for causal explanation is (...) needed. And we will investigate to what extent non-monotonic epistemic logic can provide such an alternative logical framework. Finally we will show that our non-monotonic logical analysis of explanation is not only suitable for simple cases such as the electric circuit, but that it also sheds new light on more controversial causal explanations such as Milton Friedman's explanation of the business cycle. (shrink)

This contribution is a report of a two months' participant observation in a Dutch hospice. The goal of the observation was to gain an overview of moral decisions in a hospice in which euthanasia, a tolerated practice in the Netherlands, is not accepted as an option. In an introduction, the development of palliative care in the Netherlands will be briefly presented. Subsequently, various moral decisions that were taken during the participant observation are presented and analysed by means of case reports. (...) Attention is especially drawn to decisions that directly or indirectly relate to euthanasia. These moral decisions will be clarified in the light of the philosophy behind the concept of palliative care as it has evolved since the foundation of St Christopher's Hospice, London in 1967. (shrink)

Background: Discussing treatment risks has become increasingly important in medical communication. Still, despite regulations, physicians must decide how much and what kind of information to present. Objective: To investigate patients’ preference for information about a small risk of a complication of colonoscopy, and whether medical and personal factors contribute to such preference. To propose a disclosure policy related to our results. Design: Vignettes study. Setting: Department of Gastroenterology, Academic Medical Centre, the Netherlands. Patients: 810 consecutive colonoscopy patients. Intervention: A home-sent (...) questionnaire containing three vignettes. Vignettes varied in the indication for colonoscopy, complication severity and level of risk. Patients were invited to indicate their wish to be informed and the importance of such information. In addition, sociodemograhic, illness-related and psychological characteristics were assessed. Main outcome measurements: Wish to be informed and importance of information. Results: Of 810 questionnaires, 68% were returned. Patients generally wished to be informed about low-risk complications, regardless of the indication for colonoscopy or the severity of the complication. The level of risk did matter, though (OR = 2.48, SE = 0.28, p = 0.001). The information was considered less important if done for population screening purposes or diagnosis of colon cancer, if the complication was less severe (bleeding) and if the risk was smaller (0.01% and 0.1%). Patients’ information preference was also related to age, mood and coping style. Limitations: Difficulty of vignettes. Conclusions: Patients generally wish to be informed about all possible risks. However, this might become uninformative. A stepwise approach is suggested. (shrink)

Les décisions politiques sur les risques environnementaux complexes font fréquemment intervenir des éléments scientifiques contestés. Il n’y a généralement pas de « faits » qui conduisent à une politique correcte unique. Les éléments de preuve qui sont intégrés dans les avis scientifiques destinés à une décision politique nécessitent une évaluation de leur qualité. En 2003, l’Agence néerlandaise d’évaluation environnementale a adopté une méthode standardisée, désignée sous le nom de « guide », dans le cadre de laquelle les principaux aspects de (...) la production et de l’utilisation des connaissances sont présentés grâce à une liste de contrôle visant à l’évaluation et à la communication des incertitudes. Dans cet article, nous présentons des résultats de l’application de ce guide à la controverse sur les risques des particules en suspension. La délibération active sur l’incertitude dans un contexte d’expertise entraîne un processus d’apprentissage commun entre les experts et les décideurs politiques, ce qui conduit à une meilleure prise de conscience du phénomène d’incertitude et de ses implications politiques.Policy decisions on complex environmental risks often involve disputed science. Typically, there are no “ facts” to support a single unequivocally correct policy. The evidence provided in scientific studies for policy-making decisions requires high-quality assessment. In 2003, the Netherlands Environmental Assessment Agency adopted a standardized method, referred to as “guidelines”, whereby key quality aspects of knowledge production and use are presented in the form of a checklist for uncertainty assessments and communication. In this article, we present the outcomes of applying the guidelines in controversies on the risks of ambient particulate matter. In the policy–advisory context, active deliberation on uncertainty produces a common learning process for advisors and policy makers, which leads to a deeper understanding and increased awareness of the phenomenon of uncertainty and its policy implications. (shrink)

There is a need for person-centred approaches and empowerment of staff within the residential care for older people; a movement called ‘culture change’. There is however no single path for achieving culture change. With the aim of increasing understandings about cultural change processes and the promotion of cultural values and norms associated with person-centred practices, this article presents an action research project set on a unit in the Netherlands providing care for older people with dementia. The project is presented as (...) a case study. This study examines what has contributed to the improvement of participation of older people with dementia in daily occupational and leisure activities according to practitioners. Data was collected by participant observation, interviews and focus groups. The results show that simultaneous to the improvement of the older people’s involvement in daily activities a cultural transformation took place and that the care became more person-centred. Spontaneous interactions and responses rather than planned interventions, analysis and reflection contributed to this. Furthermore, it proved to be beneficial that the process of change and the facilitation of that process reflected the same values as those underlying the cultural change. It is concluded that changes arise from dynamic, interactive and non-linear processes which are complex in nature and difficult to predict and to control. Nevertheless, managers and facilitators can facilitate such change by generating movement through the introduction of small focused projects that meet the stakeholders’ needs, by creating conditions for interaction and sense making, and by promoting the new desired cultural values. (shrink)

In October 1924, The Physical Review, a relatively minor journal at the time, published a remarkable two-part paper by John H. Van Vleck, working in virtual isolation at the University of Minnesota. Van Vleck used Bohr's correspondence principle and Einstein's quantum theory of radiation to find quantum formulae for the emission, absorption, and dispersion of radiation. The paper is similar but in many ways superior to the well-known paper by Kramers and Heisenberg published the following year that is widely credited (...) to have led directly to Heisenberg's Umdeutung paper. As such, it clearly shows how strongly the discovery of matrix mechanics depended on earlier work on the application of the correspondence principle to the interaction of matter and radiation. (shrink)

We discuss the early career of John H. Van Vleck, one of the earliest American quantum theorists who shared the 1977 Nobel prize with his student Philip W. Anderson and Sir Nevill Mott. In particular, we follow Van Vleck's trajectory from his 1926 Bulletin for the National Research Council on the old quantum theory to his 1932 book, The Theory of Electric and Magnetic Susceptibilities. We highlight the continuity of formalism and technique in the transition from dealing with spectra in (...) the old quantum theory to dealing with susceptibilities in the new quantum mechanics. Our main focus is on the checkered history of a numerical factor in the so-called Langevin-Debye formula for the electric susceptibility of gases. Classical theory predicts, under very general conditions, that this factor is equal to 1/3. The old quantum theory predicted values up to 14 times higher. Van Vleck showed that quantum mechanics does away with this "wonderful nonsense" and restores the classical value 1/3 under equally general conditions. The Langevin-Debye formula thus provides an instructive example of a Kuhn loss in one paradigm shift that was regained in the next. In accordance with the expectation of Thomas S. Kuhn that textbooks tend to sweep Kuhn losses under the rug, Van Vleck did not mention this particular Kuhn loss anywhere in his 1926 NRC Bulletin. Contrary to Kuhn's expectations, however, he put the regained Kuhn loss in susceptibility theory to good pedagogical use in his 1932 book. Kuhn claimed that textbooks must suppress, truncate, and/or distort the prehistory of their subject matter if they are to inculcate the exemplars of the new paradigm in their readers. This claim is not borne out in this case. We argue that it is ultimately because of the continuity of formalism and technique that we draw attention to that Van Vleck could achieve his pedagogical objectives in his 1932 book even though he devoted about a third of it to the treatment of susceptibilities in classical theory and the old quantum theory in a way that matches the historical record reasonably well. (shrink)

In October 1924, The Physical Review, a relatively minor journal at the time, published a remarkable two-part paper by John H. Van Vleck, working in virtual isolation at the University of Minnesota. Using Bohr’s correspondence principle and Einstein’s quantum theory of radiation along with advanced techniques from classical mechanics, Van Vleck showed that quantum formulae for emission, absorption, and dispersion of radiation merge with their classical counterparts in the limit of high quantum numbers. For modern readers Van Vleck’s paper is (...) much easier to follow than the famous paper by Kramers and Heisenberg on dispersion theory, which covers similar terrain and is widely credited to have led directly to Heisenberg’s Umdeutung paper. This makes Van Vleck’s paper extremely valuable for the reconstruction of the genesis of matrix mechanics. It also makes it tempting to ask why Van Vleck did not take the next step and develop matrix mechanics himself. (shrink)

This is the second installment of a two-part paper on developments in quantum dispersion theory leading up to Heisenberg’s Umdeutung paper. In telling this story, we have taken a 1924 paper by John H. Van Vleck in The Physical Review as our main guide. In this second part we present the detailed derivations on which our narrative in the first part rests. The central result that we derive is the Kramers dispersion formula, which played a key role in the thinking (...) that led to Heisenberg’s Umdeutung paper. We derive classical formulae for the dispersion, emission, and absorption of radiation and use Bohr’s correspondence principle to construct their quantum counterparts both for the special case of a charged harmonic oscillator (Sect. 5) and for arbitrary non-degenerate multiply-periodic systems (Sect. 6). We then rederive these results in modern quantum mechanics (Sect. 7). (shrink)

Die vorliegende Arbeit ist die umgearbeitete Fassung einer Disser tation, die im Sommersemester 1964 von der Philosophischen Fa kultiit der Universitat KOln angenommen wurde. In der Dissertation standen die beiden folgenden Problembereiche im Zentrum der Betrachtung: die Funktion des teleologischen Geschichtsdenkens flir die transzendentale Phanomenologie und Husserls Riickgang auf die vorwissenschaftliche Lebenswelt, so wie er sich aus der Epoche von den objektiven Wissenschaften ergibt. Diese Themen sind in die umfassenderen Zusammenhange dieser Untersuchung eingegangen. Ihre Aufgabe ist es, Husserls Spatwerk in (...) seiner Ein heitlichkeit und Geschlossenheit aus dem Blickpunkt des Riick ganges von der objektiven Wissenschaft auf die Lebenswelt in einer neuen Perspektive sichtbar werden zu lassen. Sie gibt von dieser Warte aus einen Durchblick durch Husserls Spatphilosophie. Ich mochte an dieser Stelle Herrn Professor Dr. Ludwig Land grebe flir seine Forderung meiner Bemiihungen urn die Endgestalt des Husserlschen Denkens danken. Gedankt sei auch dem Direktor des Husserl-Archivs zu Lowen, Herrn Professor Dr. Dr. h.c. H. L. Van Breda flir seine Unterstiitzung und die freundliche Erlaubnis, aus unveroffentlichten Manuskripten Husserls zitieren zu diirfen. (shrink)

I relate the story of how matrix mechanics grew out of the treatment of optical dispersion in the old quantum theory, paying special attention to the contributions of the American theoretical physicists John H. Van Vleck and John C. Slater. Van Vleck shares the credit with Max Born for being the first to publish a full derivation of the crucial Kramers dispersion formula using Bohr’s correspondence principle. Slater was one of the architects of the short-lived but influential Bohr-Kramers-Slater (BKS) theory (...) that helped popularize the so-called Ersatz- or virtual oscillators central both to the treatment of dispersion in the old quantum theory and to the transition to matrix mechanics. (shrink)

Bringing continental sensibilities and skill to his project, David Janssens has abandoned the line of defense heretofore used by North American intellectuals to shield Leo Strauss from criticism: Janssens wastes no time trying to prove Strauss was a liberal democrat, frankly admits his atheism, and emphasizes the continuity and European origins of his thought. Nevertheless committed to defending Strauss even at his most vulnerable points, Janssens is compelled to anchor his new defensive position on a misreading of what he calls (...) "an inconspicuous footnote" in Philosophie und Gesetz (1935). (shrink)