http://repub.eur.nl/res/aut/7027/ List of Publications en http://repub.eur.nl/static-eur/img/logo.png http://repub.eur.nl http://repub.eur.nl/res/pub/39265/ 2013-01-24T00:00:00Z This Clinical Opinion points to a potential conflict between the scarcity of evidence on paternal preconception risk factors for adverse pregnancy outcomes and the view that preconception care should be also directed at men. We argue that from an ethical perspective, responsible fatherhood starts already before conception, as long as the evidence increases on the benefits of paternal preconception lifestyle (modification). Our explorative study suggests that the strength of the evidence for paternal preconception lifestyle modification is important for men. We argue that 5 aspects together determine the moral responsibility of prospective fathers to modify their behavior: the strength of the evidence of the risk factor, the modifiability of the risk, the efforts necessary to eliminate or diminish the risk factor, the severity of harm, and the probability that harm will occur and that it will be prevented by modifying the risk factor. The case of paternal preconception smoking illustrates the analysis. http://repub.eur.nl/res/pub/38202/ 2012-03-01T00:00:00Z In most Western countries, information on prenatal screening for Down syndrome is provided in the first-trimester of pregnancy. The purpose of this study was to examine whether this information should additionally be provided before pregnancy to improve the informed decision-making process. In an empirical study, we obtained data from pregnant women with respect to their preferences regarding information on prenatal screening preconceptionally. Questionnaire data (n=510) showed that 55.7% of responding women considered participating in prenatal screening for Down syndrome before pregnancy. 28.0% of women possessed information on prenatal screening preconceptionally. 84.6% preferred not to receive information preconceptionally in retrospect. In an ethical analysis, we elaborated on these preferences by weighing pros and cons. We considered two arguments against the provision of information on prenatal screening preconceptionally: women's preference to receive information in a step-by-step manner, and the risk of providing a directive message. We identified three reasons supporting its provision preconceptionally: the likelihood of making an informed decision could, firstly, be increased by "unchaining" the initial information from possible subsequent decisions, and, secondly, by providing women sufficient time to deliberate. Thirdly, the probability of equal access to prenatal screening may increase. To conclude with, we propose to incorporate an information offer on prenatal screening for Down syndrome in preconception care consultations. By offering information, instead of providing information, prospective parents are enabled to either accept or decline the information, which respects both their right to know and their right not-to-know. http://repub.eur.nl/res/pub/30858/ 2011-10-01T00:00:00Z In the Netherlands fertility doctors increasingly formulate protocols, which oblige patients to quit their unhealthy lifestyle before they are admitted to IVF procedures. We argue that moral arguments could justify parenting protocols that concern all future parents. In the first part we argue that want-to-be parents have moral responsibilities towards their future children to prevent them from harm by diminishing or eliminating risk factors before as well as during the pregnancy. This is because of the future children's potential to become of a certain type, more specifically: a person that will be the want-to-be parents' child. Want-to-be parents intend to become pregnant and therefore have an additional moral reason to diminish the risks. Also, people who become pregnant unintentionally have the responsibility to prevent their children from harm, unless they become pregnant due to contraception failure. All people not wanting to become pregnant should use contraception methods carefully. In the second part of this paper we translate the want-to-be parents' responsibilities into practice. We distinguish four determinants of risk factors: modifiability, chance, severity and effort. We examine some evidence-based risk factors based on these variables and deduce levels of responsibility. In conclusion, formulating informal requirements for want-to-be parents is morally required and therefore also for want-to-be parents in need of medical assistance. The protocols developed by fertility doctors in the Netherlands could be seen as the precursor for a general, informal Parenting Protocol that could be developed on the basis of an extended and thoroughly debated risk-responsibility analysis. http://repub.eur.nl/res/pub/33320/ 2011-09-01T00:00:00Z http://repub.eur.nl/res/pub/34360/ 2011-09-01T00:00:00Z Efforts to counter the rise in overweight and obesity, such as taxes on certain foods and beverages, limits to commercial advertising, a ban on chocolate drink at schools or compulsory physical exercise for obese employees, sometimes raise questions about what is considered ethically acceptable. There are obvious ethical incentives to these initiatives, such as improving individual and public health, enabling informed choice and diminishing societal costs. Whereas we consider these positive arguments to put considerable effort in the prevention of overweight indisputable, we focus on potential ethical objections against such an effort. Our intention is to structure the ethical issues that may occur in programmes to prevent overweight and/or obesity in order to encourage further debate. We selected 60 recently reported interventions or policy proposals targeting overweight or obesity and systematically evaluated their ethically relevant aspects. Our evaluation was completed by discussing them in two expert meetings. We found that currently proposed interventions or policies to prevent overweight or obesity may (next to the benefits they strive for) include the following potentially problematic aspects: effects on physical health are uncertain or unfavourable; there are negative psychosocial consequences including uncertainty, fears and concerns, blaming and stigmatization and unjust discrimination; inequalities are aggravated; inadequate information is distributed; the social and cultural value of eating is disregarded; people's privacy is disrespected; the complexity of responsibilities regarding overweight is disregarded; and interventions infringe upon personal freedom regarding lifestyle choices and raising children, regarding freedom of private enterprise or regarding policy choices by schools and other organizations. The obvious ethical incentives to combat the overweight epidemic do not necessarily override the potential ethical constraints, and further debate is needed. An ethical framework to support decision makers in balancing potential ethical problems against the need to do something would be helpful. Developing programmes that are sound from an ethical point of view is not only valuable from a moral perspective, but may also contribute to preventing overweight and obesity, as societal objections to a programme may hamper its effectiveness. © 2011 The Authors. obesity reviews http://repub.eur.nl/res/pub/31255/ 2011-08-01T00:00:00Z Reproductive health has improved little in the last few decades. The Netherlands, particularly in large cities, has relatively high perinatal death rates compared with other European countries. Lack of improvement in reproductive outcomes despite improved quality of and better access to prenatal care strongly suggests that prenatal care alone is insufficient. We discuss how preconception care offers new strategies for improving reproductive health, how it usefully connects the life course of the affected individual and many health-care disciplines, and the benefits of combining a top-down policy structure and bottom-up organisation around caregivers. Given the likely benefits and cost savings calculated for the Netherlands, we conclude that failing to facilitate preconception care would reflect a breakdown of both professional and governmental responsibilities. http://repub.eur.nl/res/pub/34493/ 2011-06-01T00:00:00Z http://repub.eur.nl/res/pub/28448/ 2010-10-26T00:00:00Z Background. The prevention of overweight sometimes raises complex ethical questions. Ethical public health frameworks may be helpful in evaluating programs or policy for overweight prevention. We give an overview of the purpose, form and contents of such public health frameworks and investigate to which extent they are useful for evaluating programs to prevent overweight and/or obesity. Methods. Our search for frameworks consisted of three steps. Firstly, we asked experts in the field of ethics and public health for the frameworks they were aware of. Secondly, we performed a search in Pubmed. Thirdly, we checked literature references in the articles on frameworks we found. In total, we thus found six ethical frameworks. We assessed the area on which the available ethical frameworks focus, the users they target at, the type of policy or intervention they propose to address, and their aim. Further, we looked at their structure and content, that is, tools for guiding the analytic process, the main ethical principles or values, possible criteria for dealing with ethical conflicts, and the concrete policy issues they are applied to. Results. All frameworks aim to support public health professionals or policymakers. Most of them provide a set of values or principles that serve as a standard for evaluating policy. Most frameworks articulate both the positive ethical foundations for public health and ethical constraints or concerns. Some frameworks offer analytic tools for guiding the evaluative process. Procedural guidelines and concrete criteria for solving important ethical conflicts in the particular area of the prevention of overweight or obesity are mostly lacking. Conclusions. Public health ethical frameworks may be supportive in the evaluation of overweight prevention programs or policy, but seem to lack practical guidance to address ethical conflicts in this particular area. http://repub.eur.nl/res/pub/22167/ 2010-10-01T00:00:00Z http://repub.eur.nl/res/pub/22175/ 2010-09-01T00:00:00Z http://repub.eur.nl/res/pub/22178/ 2010-08-01T00:00:00Z http://repub.eur.nl/res/pub/22180/ 2010-07-01T00:00:00Z http://repub.eur.nl/res/pub/27956/ 2010-07-01T00:00:00Z Objectives To evaluate whether the requirement of "minimal risk and burden"for paediatric research without direct benefit to the subjects compromises the ability to obtain data necessary for improving paediatric care. To provide evidence-based reflections on the EU recommendation that allows for a higher level of risk. Design and setting Systematic analysis of the approval/ rejection decisions made by the Dutch Central Committee on Research involving Human Subjects (CCMO). Review methods The analysis included 165 proposals for paediatric research without direct benefit that were reviewed by the CCMO between January, 2000, and July, 2007. A separate, in-depth analysis of all drug studies included 18 early phase drug studies and nine other drug studies without direct benefit. Results 11 out of 165 studies were definitively rejected because the CCMO did not regard the risk and/or burden to be minimal. In three of these 11 cases (including two early phase drug studies) the requirement of minimal risk and burden was cited as the only reason for rejection. Four other early phase drug studies also involved risks and/or burdens that were not regarded to be minimal but were nevertheless approved. Conclusions The requirement of minimal risk and burden, aiming to protect research subjects, occasionally leads to rejection of protocols. Early phase drug studies relatively often do not comply with the requirement. Committees may find ways to approve important studies that formally should be rejected, but that is not a desirable solution. The regulatory framework should be revised to make such occasional exceptions to the requirement legitimate and transparent. http://repub.eur.nl/res/pub/21208/ 2010-03-01T00:00:00Z http://repub.eur.nl/res/pub/27434/ 2010-01-01T00:00:00Z http://repub.eur.nl/res/pub/30470/ 2008-12-15T00:00:00Z We studied the experiences of children identified by family screening who were found to be a mutation carrier for a genetic cardiovascular disease (Long QT Syndrome (LQTS), Hypertrophic Cardiomyopathy (HCM), Familial Hypercholesterolemia (FH)). We addressed the (a) manner in which they perceive their carrier status, (b) impact on their daily lives, and (c) strategy used to cope with these consequences. Children (aged 8-18) who tested positive for LQTS (n = 11), HCM (n = 6) or FH (n = 16), and their parents participated in semi-structured audiotaped interviews. Interview topics included illness perception, use of medication, lifestyle modifications, worries, and coping. Each interview was coded by two researchers. The qualitative analysis was guided by Leventhal's model of self-regulation. The children were overall quite articulate about the disease they were tested for, including its mode of inheritance. They expressed positive future health perceptions, but feelings of controllability varied. Adherence and side-effects were significant themes with regard to medication-use. Refraining from activities and maintaining a non-fat diet were themes concerning lifestyle modifications. Some children spontaneously reported worries about the possibility of dying and frustration about being different from peers. Children coped with these worries by expressing faith in the effectiveness of medication, trying to be similar to peers or, in contrast, emphasizing their "being different." Children generally appeared effective in the way they coped with their carrier status and its implications. Nevertheless, dealing with the daily implications of their condition remains difficult in some situations, warranting continued availability of psychosocial support. http://repub.eur.nl/res/pub/29138/ 2008-04-01T00:00:00Z http://repub.eur.nl/res/pub/36753/ 2007-12-01T00:00:00Z http://repub.eur.nl/res/pub/35161/ 2007-10-01T00:00:00Z OBJECTIVE: To describe a case of deliberate termination of life (euthanasia) in intensive care. DESIGN: Case report and review of the literature. PATIENT: A 56-yr-old man experienced a bilateral hemorrhage in the pontine structures and the medulla oblongata, resulting in a locked-in syndrome. The patient was taught to communicate by eye opening. On day 10 after the hemorrhage, he was informed about his diagnosis and prognosis. He was asked if he wished prolonged care, but this was refused. He was offered withdrawal of fluids and ventilation under sedation or deliberate termination of life (euthanasia). He chose euthanasia. INTERVENTIONS: The patient was admitted to the intensive care unit and was mechanically ventilated. The patient was euthanized 33 days after the diagnosis by the injection of 30 mg of midazolam, discontinuation of ventilation, and injection of 1.4 g of thiopentone. MAIN RESULTS: The tetraplegic aphonic patient was declared competent. His refusal of prolonged care was taken seriously. The requirements of due care according to the Dutch euthanasia act were met in this case. CONCLUSIONS: Euthanasia is an option in terminal illness in the Netherlands, but it is very rarely performed in intensive care. This case demonstrates that euthanasia is possible in a conscious patient who is unable to speak or write and who is mechanically ventilated. http://repub.eur.nl/res/pub/36385/ 2007-10-01T00:00:00Z Aim: Description and analysis from an ethical point of view of the habit of young people nowadays to carry around a bottle of water at all times. Quintessence: This paper describes the habit and discusses its possible origin as well as some rituals and rules attached to the drinking of the water. Ethical questions are raised, such as a possible 'aqua gap' related to socio-economic circumstances within affluent Western societies and the problem of global justice in a world where the availability of clean drinking water is so unequally divided. It is strange that the notion of a 'healthy addiction' does not seem to attract the attention of ethicists. Conclusions: The first conclusion is that the habit, because it is a healthy habit, influences views on what is considered to be polite or socially acceptable, such as the right to drink from a water bottle during theatre performances. The second conclusion is that there are lessons to be learned: that bottled water drinking is considered 'cool' can make many adapt to a healthy habit in a relatively short time. This could be useful for health education purposes. http://repub.eur.nl/res/pub/37038/ 2007-04-01T00:00:00Z http://repub.eur.nl/res/pub/10036/ 2002-01-01T00:00:00Z Among fertility centres, much discussion focuses on whether to withhold infertility treatment from special patient groups (lesbians, prospective single parent(s), prospective parent(s) of relatively advanced age, or with severe diseases) because it is assumed that this is in the best interest of the child. The present study aimed to establish whether there is any empirical evidence for this assumption. A literature search was made in PubMed/Medline and PsycINFO to identify studies that had assessed psychological outcomes of children and quality of parenting after infertility treatment. Eight studies met the following inclusion criteria: published in an English-language peer-reviewed journal between 1978 and 2002, and focused on psychosocial child development and quality of parenting after infertility treatment in the above-mentioned special patient groups. All reviewed studies focused on lesbian or single-parent families. Overall, the methodological quality of studies as assessed by a standardized set of criteria was high. The evidence of the studies (assessed by the best evidence synthesis method) was strong for the conclusion that in lesbian families the psychosocial development of children (median age 6.1 years) and the quality of parenting are not different from those in healthy heterosexual two-parent families after infertility treatment or natural conception. Therefore, withholding infertility treatment from lesbian families on the assumption that such intervention may not be in the interest of the prospective child seems unjustified. For the other special patient groups, no conclusions could be drawn, because of a lack of relevant studies.