The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of (...) the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline. (shrink)
The use of coercive measures in the care for the addicted has changed over the past 20 years. Laws that have adopted the “dangerousness” criterion in order to secure patients’ rights to non-intervention are increasingly subjected to critique as many authors plead for wider dangerousness criteria. One of the most salient moral issues at stake is whether addicts who are at risk of causing danger to themselves should be involuntarily admitted and/or treated. In this article, it is argued that the (...) dilemma between coercion on the one hand and abandonment on the other cannot be analysed without differentiated perspectives on the key notions that are used in these debates. The ambiguity these notions carry within care practice indicates that the conflict between the prevention of danger and respect for autonomy is not as sharp as the legal systems seem to imply. Some coercive measures need not be interpreted as an infringement of autonomy—rather, they should be interpreted as a way to provide good care. (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)
Within a period of one year, two countries have enacted laws that articulate conditions under which euthanasia and physician assisted suicide are permitted. Belgium and the Netherlands thus distinguish themselves from all other countries of the world.In Belgium, palliative care organisations have been pro-actively involved in the debate on the contents of the law, highlighting that if euthanasia can ever be justified, it is necessary to provide good palliative care for all and to include in the euthanasia law what has (...) been called a palliative filter, i.e. a compulsory prior consultation with a specialised palliative care team. In the Netherlands, before the euthanasia law was enacted, there had been a policy of pragmatic tolerance for decades. The enactment itself did not give rise to intense debate. It can be questioned whether the new law would change anything at all since it only officially sanctioned an existing practice. This however does not mean that caregivers in palliative care, together with palliative care organisations, have not participated in the euthanasia debate.In the first part of this article the input of palliative care organisations in the Dutch euthanasia debate is described and explained by situating it in its broader context. First opinions on euthanasia of a variety of palliative care organisations are described. Secondly the Dutch debate on palliative care and euthanasia is analysed and evaluated. In a second part of this article a brief introduction to Belgian palliative care is given. This introduction is followed by an overview of the way organised palliative care has been active in the Belgian euthanasia debate. Attention too is given to the Belgian discussion on palliative sedation, sedation being presented by some as the palliative alternative to euthanasia but seen by others as nothing but euthanasia in disguise. (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)
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)
BackgroundCarrier screening is generally performed with the aim of identifying healthy couples at risk of having a child affected with a monogenic disorder to provide them with reproductive options. Expanded carrier screening, which provides the opportunity for multiple conditions to be screened in one test, offers a more cost-effective and comprehensive option than screening for single disorders. However, implementation of ECS at a population level would have implications for genetic counseling practice.MethodsWe conducted semi-structured interviews with sixteen European clinical and molecular (...) geneticists with expertise in carrier screening to explore their views on the implementation of ECS in the clinical setting.ResultsUsing inductive content analysis, we identified content categories relevant to the pre- and post-test settings. Participants believed ECS would ideally be targeted at couples before pregnancy. There was some disagreement regarding the acceptability of performing ECS in individuals, with several participants actively opposing individual-based screening. In addition, participants discussed the importance of ensuring informed and voluntary participation in ECS, recommending measures to minimize external pressure on prospective parents to undergo testing. A need for adequate counseling to foster informed, autonomous reproductive decision-making and provide support for couples found to be at risk was emphasized.ConclusionsPractical challenges in optimizing pre-test education and post-test counseling should not be underestimated and they should be carefully addressed before implementing ECS in the clinical setting. (shrink)
This article discusses the latest developments regarding euthanasia and palliative care in the Netherlands. On the one hand, a legally codified practice of euthanasia has been established. On the other hand, there has been a strong development of palliative care. The combination of these simultaneous processes seems to be rather unique. This contribution first focuses on these remarkable developments. Subsequently, the analysis concentrates on the question of how these new developments have influenced the ethical debate.
Lo studio verte sulla terminologia avicenniana utilizzata per richiamare l'idea di «emanazione» e quella di «creazione». Il vocabolario avicenniano è comparato in particolare alla terminologia della Theologia Aristotelis.
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)
In the Pastoral Constitution on the Church in the Modern World, Vatican II devoted a chapter to “Fostering the Nobility of Marriage and the Family” . We read in the text, as it was brought to a vote in the general session of 16 November 1965 and approved by the overwhelming majority of the council fathers, that spouses must determine the moral character of their activity according to “objective criteria based upon the dignity of the human person” . Among the (...) changes suggested by a number of fathers along with the voting for this text were several concerning the formulation of this personalist standard. According to the rules of the council, no changes could be allowed which would alter the essence of the teaching already ratified by a more than sufficient majority. However, individual formulations in the text could be clarified or nuanced.In the formulation of the “objective criteria” some fathers proposed to say that these are based on the nature and the dignity of the human person and the nature of the acts of the person . Hence the definitive formulation, “objective criteria based on the nature of the human person and his acts”. To explain how the nature of the person's acts is morally relevant, the official commentary on the expression that was used states: “By these terms it is asserted that also the acts must be judged not according to their merely biological aspect, but insofar as they pertain to the human person integrally and adequately considered.” Others asked to mention that these standards apply to the procreative capacities of human nature . The answer was that such an addition would be superfluous, since it is a question of a general principle, one which is applicable not only to marriage and sexuality but also to the entire domain of human activity.To consider the human person in an integral and adequate way, account must be taken of the person's fundamental aspects or dimensions. I discern eight such essential dimensions. (shrink)
Dutch euthanasia and physician-assisted suicide stand on the eve of important legal changes. In the summer of 1999, a new government bill concerning euthanasia and physician-assisted suicide was sent to Parliament for discussion. This bill legally embodies a ground for exemption from punishment for physicians who conduct euthanasia or physician-assisted suicide and comply with certain requirements. On November 28, 2000, the Dutch parliament approved an adapted version of this bill. Since the approval by the Dutch Senate can be regarded as (...) a formality, it is expected that the bill will come into force in the course of this year (2001). In this paper we discuss these new developments. (shrink)
The 2013 Rostock Symposium on Systems Biology and Bioinformatics in Aging Research was again dedicated to dissecting the aging process using in silico means. A particular focus was on ontologies, as these are a key technology to systematically integrate heterogeneous information about the aging process. Related topics were databases and data integration. Other talks tackled modeling issues and applications, the latter including talks focussed on marker development and cellular stress as well as on diseases, in particular on diseases of kidney (...) and skin. (shrink)