Health Agency and Perfectionism:The Case of Perinatal Health Inequalities

Poor pregnancy outcomes and inequalities in these outcomes remain a major challenge, even in prosperous societies that have high-quality health care and public health policy in place. In this article, we propose that justice demands the improvement of what we call the ‘health agency’ of parents-to-be as part of a response to these poor outcomes. We take health agency to have three aspects: (i) the capacity to form health-goals one has reason to value, (ii) the control one perceives to have over achieving those health-goals and (iii) the freedom(s) one has to achieve those health-goals. We will moreover argue that this demand of justice can be best based on a perfectionist rather than neutralist method of justification. Subsequently, we will argue that perfectionist policy may be paternalistic but not wrongfully paternalistic. This leads us to conclude that perfectionism should be adopted to inform and justify public health policy that is aimed at improving health agency in general and counteracting poor pregnancy outcomes and inequalities in perinatal health outcomes in particular

Dementia and assisted suicide and euthanasia

Abstract : The number of dementia patients requesting euthanasia in the Netherlands has increased over the past five years. The issue is highly controversial. In this contribution we discuss some of the main arguments: the nature of suffering, the voluntariness of the request and the role of the physician. We argue that society has a duty to care for patients who suffer from dementia and to make their lives as good and comfortable as possible. We also argue that it can be morally acceptable for those who do not want to continue their life with dementia to choose to die. The choice can be based on good reasons

Ethical framework for the detection, management and communication of incidental findings in imaging studies, building on an interview study of researchers' practices and perspectives

BACKGROUND: As thousands of healthy research participants are being included in small and large imaging studies, it is essential that dilemmas raised by the detection of incidental findings are adequately handled. Current ethical guidance indicates that pathways for dealing with incidental findings should be in place, but does not specify what such pathways should look like. Building on an interview study of researchers’ practices and perspectives, we identified key considerations for the set-up of pathways for the detection, management and communication of incidental findings in imaging research. METHODS: We conducted an interview study with a purposive sample of researchers (n = 20) at research facilities across the Netherlands. Based on a qualitative analysis of these interviews and on existing guidelines found in the literature, we developed a prototype ethical framework, which was critically assessed and fine-tuned during a two-day international expert meeting with bioethicists and representatives from large population-based imaging studies from the United Kingdom, Germany, Sweden and Belgium (n = 14). RESULTS: Practices and policies for the handling of incidental findings vary strongly across the Netherlands, ranging from no review of research scans and limited feedback to research participants, to routine review of scans and the arrangement of clinical follow-up. Respondents felt that researchers do not have a duty to actively look for incidental findings, but they do have a duty to act on findings, when detected. The principle of reciprocity featured prominently in our interviews and expert meeting. CONCLUSION: We present an ethical framework that may guide researchers and research ethics committees in the design and/or evaluation of appropriate pathways for the handling of incidental findings in imaging studies. The framework consists of seven steps: anticipation of findings, information provision and informed consent, scan acquisition, review of scans, consultation on detected abnormalities, communication of the finding, and further clinical management and follow-up of the research participant. Each of these steps represents a key decision to be made by researchers, which should be justified not only with reference to costs and/or logistical considerations, but also with reference to researchers’ moral obligations and the principle of reciprocity

Child development and quality of parenting in lesbian families: no psychosocial indications for a-priori withholding of infertility treatment. A systematic review

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 infer

Prevention in the age of personal responsibility:Epigenetic risk-predictive screening for female cancers as a case study

Epigenetic markers could potentially be used for risk assessment in risk-stratified population-based cancer screening programmes. Whereas current screening programmes generally aim to detect existing cancer, epigenetic markers could be used to provide risk estimates for not-yet-existing cancers. Epigenetic risk-predictive tests may thus allow for new opportunities for risk assessment for developing cancer in the future. Since epigenetic changes are presumed to be modifiable, preventive measures, such as lifestyle modification, could be used to reduce the risk of cancer. Moreover, epigenetic markers might be used to monitor the response to risk-reducing interventions. In this article, we address ethical concerns related to personal responsibility raised by epigenetic risk-predictive tests in cancer population screening. Will individuals increasingly be held responsible for their health, that is, will they be held accountable for bad health outcomes? Will they be blamed or subject to moral sanctions? We will illustrate these ethical concerns by means of a Europe-wide research programme that develops an epigenetic risk-predictive test for female cancers. Subsequently, we investigate when we can hold someone responsible for her actions. We argue that the standard conception of personal responsibility does not provide an appropriate framework to address these concerns. A different, prospective account of responsibility meets part of our concerns, that is, concerns about inequality of opportunities, but does not meet all our concerns about personal responsibility. We argue that even if someone is responsible on grounds of a negative and/or prospective account of responsibility, there may be moral and practical reasons to abstain from moral sanctions

Doing the right thing: a qualitative investigation of retractions due to unintentional error

Retractions solicited by authors following the discovery of an unintentional error—what we henceforth call a “self-retraction”—are a new phenomenon of growing importance, about which very little is known. Here we present results of a small qualitative study aimed at gaining preliminary insights about circumstances, motivations and beliefs that accompanied the experience of a self-retraction. We identified retraction notes that unambiguously reported an honest error and that had been published between the years 2010 and 2015. We limited our sample to retractions with at least one co-author based in the Netherlands, Belgium, United Kingdom, Germany or a Scandinavian country, and we invited these authors to a semi-structured interview. Fourteen authors accepted our invitation. Contrary to our initial assumptions, most of our interviewees had not originally intended to retract their paper. They had contacted the journal to request a correction and the decision to retract had been made by journal editors. All interviewees reported that having to retract their own publication made them concerned for their scientific reputation and career, often causing considerable stress and anxiety. Interviewees also encountered difficulties in communicating with the journal and recalled other procedural issues that had unnecessarily slowed down the process of self-retraction. Intriguingly, however, all interviewees reported how, contrary to their own expectations, the self-retraction had brought no damage to their reputation and in some cases had actually improved it. We also examined the ethical motivations that interviewees ascribed, retrospectively, to their actions and found that such motivations included a combination of moral and prudential (i.e. pragmatic) considerations. These preliminary results suggest that scientists would welcome innovations to facilitate the process of self-retraction

Why NIPT should be publicly funded

Asking pregnant women to (co)pay for non-invasive prenatal testing (NIPT) out of pocket leads to unequal access across socioeconomic strata. To avoid these social justice issues, first-trimester prenatal screening should be publicly funded in countries such as the Netherlands, with universal coverage healthcare systems that offer all other antenatal care

Ethical frameworks for complex medical decision making in older patients: A narrative review

Background: With an ageing population physicians are more and more faced with complex medical and moral situations. Medical professional guidelines are often of limited use in these cases. To assist the decision making process, several ethical frameworks have been proposed. Ethical frameworks are analytical tools that are designed to assist physicians and other involved healthcare workers in complex moral decision-making situations. Most frameworks are step-by-step plans that can be followed chronologically during moral case deliberations. Some of these step-by-step plans provide specific moral guidance as to what would constitute a morally acceptable conclusion, while others do not. Objective: In this narrative review we will present and discuss the ethical frameworks used for medically complex situations in older people that have been proposed in literature. Methods: Three electronic databases (embase.com. Medline Ovid and PsychINFO Ovid) were searched from inception to January 24, 2020, with the help of expert librarians. Results: Twenty-three studies were included in the review, containing seventeen different frameworks. Twenty studies described step-by-step-frameworks, with the number of steps varying from three to twelve. In four studies suggestions were made as how to balance conflicting moral values. Conclusions and implications of key findings: Ethical frameworks are meant to assist healthcare professionals who are faced with morally complex decisions in older patients. In our view, these frameworks should contain a stepby-step plan, moral values and an approach to balancing moral values

What to do when patients and physicians disagree? Qualitative research among physicians with different working experiences

Purpose: Impasses between patients, relatives and physicians occur frequently. With the growing attention for shared decision making, it is valuable to know how impasses arise. To understand the challenges experienced by physicians when their opinion on medical decisions differ from those of patients or relatives. Methods: Fifteen physicians with different working experiences, from five medical specialties were interviewed using a narrative approach. Interviews were based on two patient stories provided by the physician. First of a patient (or relative) who did not want to adhere to a treatment the physician deemed necessary, and the second of a patient (or relative) who requested a treatment the physician felt was unnecessary. Data were analyzed using a bottom-up approach, with identification of five themes (autonomy of the patient, communication, emotions, circumstances and metaphors). Twenty subthemes were formed. Results: 693 references were made. Six major nodes were identified: frustration experienced by the physician, role of the relatives, agreement, cultural/religious aspects, comprehension by the patient of the situation and the existence of an established relationship between patient and physician. Conclusions: Physicians felt uncomfortable when there was disagreement between themselves and patients or relatives. Frustration was felt when relatives spoke on behalf of the patient, while there was no evidence the desired decision was ever expressed by the patient. A disagreement with a patient was described as being less frustrating, when the patient was able to explain the reasons for making a decision. Differences in background, especially religious, were often mentioned as complicatin