It is generally accepted that morally justified healthcare rationing must be non-discriminatory and cost-effective. However, given conventional concepts of cost-effectiveness, resources spent on disabled people are spent less cost-effectively, ceteris paribus, than resources spent on non-disabled people. Thus, it is reasonable to assume that standard cost-effectiveness discriminates against the disabled. Call this thedisability discrimination problem.Part of the disability discrimination involved in cost-effectiveness stems from the way in which health-related quality of life is accounted for and measured. This paper (...) offers and defends a patient-sensitive account of health-related quality of life, which can effectively make cost-effectiveness less discriminatory against the disabled and thus more morally justified. (shrink)

Several studies have established the prevalence of discrimination upon the basis of weight in healthcare; however, these studies lack the element of human experience that makes addressing the issue vital to both individual and public health. Narrative medicine is an interdisciplinary field that utilizes powerful narrative skills and creativity to address the needs of those who seek and deliver healthcare, promoting healing, and self-reflection for both patients and physicians. This paper seeks to re-evaluate key studies regarding the issue of (...) weight discrimination in healthcare through the lens of narrative medicine. In doing so, it further integrates the aspect of human experience into the study of medical ethics in order to improve the lived experience of overweight individuals in medicine. (shrink)

The prelims comprise: -/- The Risk of Injustice and Characterizing a Group as “Vulnerable”; Discrimination and Distributive Justice: Some Background Choices for Providers; Life-Cycles: Children, Pregnant Women, and the Elderly; The Significance of Injustice; Disability; Race; People in Poverty and Immigrants; Conclusion; Notes; References.

Individuals with intersex variations fall outside the normative sex binary of male and female for various reasons. These individuals are highly stigmatized and discriminated against in the legal, medical and social spheres. In this paper, we analyze manifestations of such discrimination in the healthcare context and hypothesize that Patient Centred Care (PCC) and Shared Decision Making (SDM) approaches are improperly practiced with intersex individuals. Through a narrative review of current literature, we present evidence of improper practice of PCC (...) and SDM and its effects on intersex individuals and, in the pediatric context, their parents. Misinformation by medical practitioners to parents of intersex individuals promotes the perpetuation of unnecessary surgical interventions. We propose strategies to improve intersex medical care, including better adherence to SDM and PCC guidelines as well as the sociocultural normalisation of intersex identity. Current perceptions of surgical interventions done on intersex infants and children need to better align with evidence-based physical and psychological health risks. All these strategies are part of preserving the autonomy and physical integrity of intersex individuals and ensuring that their well-being remains at the heart of their care in the medical context. (shrink)

In 2022, an estimated 110,000 people died of an opioid-related drug overdose in the United States (Ahmad et al. 2024) primarily related to illicit fentanyl. However, fatal overdoses comprise only a...

Previously diagnosed by symptoms alone, Alzheimer's disease is now also defined by measures of amyloid and tau, referred to as “biomarkers.” Biomarkers are detectible up to twenty years before symptoms present and open the door to predicting the risk of Alzheimer's disease. While these biomarkers provide information that can help individuals and families plan for long-term care services and supports, insurers could also use this information to discriminate against those who are more likely to need such services. In this article, (...) we evaluate whether state laws prohibit long-term care insurers from making discriminatory or unfair underwriting and coverage decisions based Alzheimer's disease biomarkers status. We report data demonstrating that current state laws do not provide meaningful protections from discrimination by long-term care insurers based on biomarker information. (shrink)

Racism against Black people, Indigenous and other racialized people continues to exist in healthcare and academic settings. Racism produces profound harm to racialized people. Strategies to address systemic racism must be implemented to bring about sustainable changes in healthcare and academic settings. This quality improvement initiative provides strategies to address systemic racism and discrimination against Black nurses and nursing students in Ontario, Canada. It is part of a broader initiative showcasing Black nurses in action to end racism and (...) class='Hi'>discrimination. We have found that people who have experienced racism need healing, support and protection including trauma-related services to facilitate their healing. Implementing multi-level, multi-pronged interventions in workplaces will create healthy work environments for all members of society, especially Black nurses who are both clients/patients and providers of healthcare. (shrink)

Quality-Adjusted Life Years (QALYs) and Disability-Adjusted Life Years (DALYs) are two of the most commonly used health measures to determine resource prioritization and the population burden of disease, respectively. There are different types of problems with the use of QALYs and DALYs for measuring health benefits. Some of these problems have to do with measurement, for example, the weights they ascribe to health states might fail to reflect with exact accuracy the actual well-being or health levels of individuals. But even (...) if these weights represent accurately the well-being levels of individuals, there is room for questioning whether these measures capture everything that we care about in these cases, or whether there are important issues that they leave out, including considerations of fairness or equality. In this regard, the measures have been criticized for treating the aggregation of small benefits as greater than the aggregation of fewer but bigger benefits,1for disregarding fair chances in favor of utility maximization,2and for raising problems when applied in the context of variable population size.3Perhaps one of the most pervasive ethical issues that has been associated with the use of these measures is the fact that they seem to discriminate against disabled people.4Since the measures assume that disabled people have lower well-being and a shorter life span, treating a disabled person’s medical condition contributes less to the maximization of years of life with good health than treating a non-disabled patient’s medical condition. (shrink)

The paper proposes a new method of researching public opinion for the purposes of valuing the outcomes of healthcare interventions. The issue I address is that, under the quality-adjusted life-year system, disabled patients face a higher cost-effectiveness hurdle than able-bodied patients. This seems inequitable. The author considers the alternative approaches to valuing healthcare interventions that have been proposed, and shows that all of them face the same problem. It is proposed that to value an outcome, instead of researching the general (...) public, the population that is to be targeted with the intervention should be researched. (shrink)

Whose values should count – those of patients or the general public – when adopting the quality-adjusted life year framework for healthcare decision making is a long-standing debate. Specific disciplines, such as economics, are not wedded to a particular side of the debate, and arguments for and against the use of patient values have been discussed at length in the literature. In 2012, Sinclair proposed an approach, grounded within patient preference theory, which sought to avoid a perceived unfair (...) discrimination against people with disabilities when using values from the general public. Key assumptions about general public values that beget this line of thinking were that ‘disabled states always tally with lower quality of life’, and the use of standardised instruments means that ‘you are forced into a fixed view of disability as a lower value state’. Drawing on recent contributions to the health economics literature, we contend that such assumptions are not inherent to the incorporation of general public values for the estimation of QALYs. In practice, whether health states of people with disabilities are of ‘lower value’ is, to some extent, a reflection of the health state descriptions that members of the public are asked to value. (shrink)

We describe a patient LS, profoundly deaf in both ears from birth, with underdeveloped superior temporal gyri. Without hearing aids, LS displays no ability to detect sounds below a fixed threshold of 60 dBs, which classifies him as clinically deaf. Under these no-hearing-aid conditions, when presented with a forced-choice paradigm in which he is asked to consciously respond, he is unable to make above-chance judgments about the presence or location of sounds. However, he is able to make above-chance judgments (...) about the content of sounds presented to him under forced-choice conditions. We demonstrated that LS has faint sensations from auditory stimuli, but questionable awareness of auditory content. LS thus has a form of type-2 deaf hearing with respect to auditory content. As in the case of a subject with acquired deafness and deaf hearing reported on a previous occasion, LS’s condition of deaf hearing is akin in some respects to type-2 blindsight. As for the case of type 2 blindsight the case indicates that a form of conscious hearing can arise in the absence of a fully developed auditory cortex. (shrink)

Current law in Victoria, Australia requires that all prospective assisted reproduction patients provide a criminal background check and child protection order check prior to being eligible for treatment. These presumptions against treatment stipulated in the Assisted Reproductive Treatment Act are discriminatory against all people that are infertile. Requiring assistance in founding a family says nothing about whether someone will be a minimally decent parent to their child. The most plausible justifications for this differential treatment of family builders that require assistance (...) are unsound. The wellbeing of the resulting child is something that the prospective patient should be presumed to have at heart, as this is the default assumption with other kinds of family builders that do not require assistance. That assisted reproduction treatment is publicly funded does not mean that the state is thereby justified in putting moral conditions on access to treatment. As we should not accept discriminatory laws, especially about practices that are of fundamental importance to the lives of citizens, the presumptions against treatment stipulated in ARTA should be eradicated. (shrink)

As is known, there has been a significant increase in the use of AI technologies in various fields related to the work of both public and private sectors. Despite its importance in economic, health, security, and educational fields, the use of AI technologies has led to several ethical and legal risks. For example, there are risks of bias or discrimination when building AI systems, challenges related to privacy and data protection, including issues that arise from errors in health protocol (...) procedures and their impact on patient health. This paper aims to highlight a number of practical applications of bias or discrimination associated with the use of AI technologies, concluding with the importance of having clear ethical governance to address the emerging risks of using AI applications. (shrink)

Background Discrimination in health care is an international challenge and a serious obstacle to justice and equality in health. Research objective The purpose of this study was to design a grounded theory of discrimination in health care based on the experiences and perceptions of Iranian healthcare providers and patients. Research design This qualitative study was conducted using by the grounded theory method. Participants and research context Data were collected through semi-structured interviews with 18 healthcare providers including 11 nurses, (...) two physicians, two nurse’s assistants, and three patients in two general hospitals in Tehran, Iran. Participants were selected through purposeful sampling and analyzed simultaneously using the Corbin and Strauss (2015) approach. Ethical considerations The study was approved by the Research Ethics Committee of the University of Social Welfare and Rehabilitation Sciences (Ethics code: IR.USWR.REC.1398.023). Also, after explaining the objectives of the study, all the participants completed and signed the written consent form. Findings The “culture of discrimination” was the study’s core category, reflecting the nature of discrimination in health care. The theory of “culture of discrimination in health care” is the result of five main categories: “individual social stimuli,” “culture of discrimination,” “unintentional discrimination,” “conflict with discrimination,” and “dissatisfaction with discriminatory behavior.” These categories cover the underlying factors, strategies, and outcomes of the discrimination process in health care. Discussion The results of the study showed that nurses and other health care providers experience unintentional discrimination. Unintentional discrimination refers to discriminatory behaviors and practices of health care providers. Conclusion The theory of culture of discrimination in health care can be used as a practical guide to describe and understand the role of health care providers, especially nurses. Further studies with a quantitative approach to applying this theory in medical settings are recommended. (shrink)

People may be subjected to discrimination from a variety of sources in the workplace. In this study of mental health workers, we contrast four potential perpetrators of discrimination (managers, co-workers, patients, and visitors) to investigate whether the negative impact of discrimination on victims’ well-being will vary in strength depending on the relative power of the perpetrator. We further explore whether the negative impact of discrimination is at least partly explained by its effects on people’s sense of (...) organizational justice, and whether the strength of mediation varies according to the source of discrimination. Using survey data from 1,733 UK mental health workers, a structural equation model was designed to test these hypotheses following a bootstrap approach. Discrimination from all sources was related to well-being, with that from managers having the strongest effects. The results support an explanation of the effect of discrimination on well-being in terms of organizational justice perceptions for discrimination from managers and from visitors, but less so for discrimination from co-workers or from patients. The study highlights the importance of differentiating amongst sources of discrimination at work and the salience of organizational justice perceptions in explaining the effects of discrimination from some sources. (shrink)

This paper briefly reviews the papers in this special section of HCA and makes the point—a point which should be obvious—that statistics are useful only as guidelines but tell one nothing about the individual patient in front of you. Chronological age merely shows what is true of most but decidedly not of all patients in a particular age group. To ration on the basis of age alone is unfair to the individual denied treatment and damaging to the community because (...) it disturbs the solidarity which comes about because most members of the community feel that the community has obligations beyond those of not directly harming them; indeed, what produces solidarity is the feeling that members of a community will do their best to come to each others help. Rationing on the basis of age alone denies people of equal treatment under the law and—when it comes to the elderly—is a type of age discrimination. It is pointed out that what matters is a patient’s disease and not his/her age. A permanently vegetative person 8 years of age is a much sadder occurrence than it would be at age 90—but the critical fact is that both are permanently vegetative. Age cuts both ways—it is irrational to spend hundreds of thousands of dollars, untold amounts of time, energy and devotion to the 520 gm infant with a gr IV diffuse haemorrhage whose chance of leading a sentient life is close to zero and to hesitate before using a diagnostic MRI on a patient who is 90 but fully alert and enjoying life. It is concluded that age as an independent variable in the allocation of resources is ethically highly problematic. (shrink)

Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient’s life expectancy with treatment. It may affect whether treatment is in a patient’s best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether or when (...) it is justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions. (shrink)

Since 1991, over half the states have enacted laws that restrict or prohibit insurers’ use of genetic information in pricing, issuing, or structuring health insurance. Wisconsin was the first state to do so, in 1991, followed by Ohio in 1993, California and Colorado in 1994, and then several more states a year in each of the next five years. Similar legislation has been pending in Congress for several years. Also, a 1996 federal law known as the Health Insurance Portability and (...) Accountability Act prohibits group health insurers from applying “preexisting condition” exclusions to genetic conditions that are indicated solely by genetic tests and not by any actual symptoms. (shrink)

Electroencephalogram (EEG) recordings are increasingly used to evaluate patients with disorders of consciousness (DOC) or assess their prognosis outcome in the short-term perspective. However, there is a lack of information concerning the effectiveness of EEG in classifying long-term (many years) outcome in chronic DOC patients. Here we tested whether EEG operational architectonics parameters (geared towards consciousness phenomenon detection rather than neurophysiological processes) could be useful for distinguishing a very long-term (6 years) clinical outcome of DOC patients whose EEGs were registered (...) within 3 months post-injury. The obtained results suggest that EEG recorded at third month after sustaining brain damage, may contain useful information on the long-term outcome of patients in vegetative state: it could discriminate patients who remain in a persistent vegetative state from patients who reach a minimally conscious state or even recover a full consciousness in a long-term perspective (6 years) post-injury. These findings, if confirmed in further studies, may be pivotal for long-term planning of clinical care, rehabilitative programs, medical-legal decisions concerning the patients, and policy makers. (shrink)

State prescription drug monitoring programs (PDMPs) use proprietary, predictive software platforms that deploy algorithms to determine whether a patient is at risk for drug misuse, drug diversion, doctor shopping, or substance use disorder (SUD). Clinical overreliance on PDMP algorithm‐generated information and risk scores motivates clinicians to refuse to treat—or to inappropriately treat—vulnerable people based on actual, perceived, or past SUDs, chronic pain conditions, or other disabilities. This essay provides a framework for challenging PDMP algorithmic discrimination as disability (...) class='Hi'>discrimination under federal antidiscrimination laws, including a new proposed rule interpreting section 1557 of the Affordable Care Act. (shrink)

The 3rd Pan-African Ethics Human Rights and Medical Law (3rd EHRML) conference was held in Johannesburg on July 7, 2013, as part of the Africa Health Congress. The conference brought together bioethicists, researchers and scholars from South Africa, Zimbabwe, Kenya and Nigeria working in the field of bioethics as well as students and healthcare workers interested in learning about ethical issues confronting the African continent. The conference which ran with a theme of "Bioethical and legal perspectives in biomedical research and (...) medical practice in Africa with a focus on: Informed consent, HIV-AIDS & Tuberculosis, leadership & organizational ethics, patients and healthcare workers rights," was designed to expand the dialogue on African bioethics beyond the traditional focus on research ethics and the ethical dilemmas surrounding the conduct of biomedical research in developing countries. This introductory article highlights some of areas of focus at the conference including issues of leadership, organizational ethics and patients and healthcare workers rights in Africa. We analyze the importance of free speech, public debate of issues, argumentation and the need to introduce the teaching and learning of ethics to students in Africa in accordance with UNESCO guidelines. This article also focuses on other challenges confronting Africa today from an ethical standpoint, including the issues of poor leadership and organizational ethics which are main contributors to the problems prevalent in African countries, such as poverty, poor education and healthcare delivery systems, terrorism, social inequities, infrastructural deficits and other forms of 'structural violence' confronting vulnerable African communities. We believe that each of the eight articles included in this supplement, which have been rigorously peer-reviewed are a good example of current research on bioethics in Africa, and explore some new directions towards broadening the African bioethics agenda as we move forward to a new dawn for Africa in the 21st century. (shrink)

Given recent legal developments in the United States, now is a critical time to draw attention to how ‘conscientious objection’ is sometimes used by health care providers to discriminate against the LGBTQ community. We review legal developments from 2019 and present several cases where health care providers used conscientious objection in ways that discriminate against the LGBTQ community, resulting in damaged trust by this underserved population. We then discuss two important conceptual points in this debate. The first involves the interpretation (...) of discrimination (provider versus patient-centered views), and we argue for a patient-centered view; the second involves the use of the people versus procedure distinction to reach a compromise between LGBTQ individuals and the clinicians who do not want to treat them. We argue the distinction is problematic when applied to treatment of the LGBTQ population. (shrink)

John Taurek famously held the view that, when deciding whom to rescue, the numbers don’t count: we should instead give everyone the same chance of surviving. Surprisingly little engagement has taken place between the detailed and rich literature on whether the numbers count in rescue cases, and the practical question of whether certain facts about patients are eligible for consideration in real-world prioritisation, e.g., in emergency triage during a pandemic. I suggest that a position close to Taurek’s maps on to (...) real-world arguments by groups representing disabled individuals. Whereas Taurek is focused on equalising survival chances, some disability rights activists and scholars appear to argue in favour of equalising selection chances. I consider the philosophical promise of this approach by appealing to the idea of “opacity respect”, and suggest a sufficientarian alternative. (shrink)

The use of Quality-Adjusted Life Years (QALYs) in healthcare allocation has been criticized as discriminatory against people with disabilities. This article considers a response to this criticism from Nick Beckstead and Toby Ord. They say that even if QALYs are discriminatory, attempting to avoid discrimination – when coupled with other central principles that an allocation system should favour – sometimes leads to irrationality in the form of cyclic preferences. I suggest that while Beckstead and Ord have identified a problem, (...) it is a misdiagnosis to lay it at the feet of an anti-discrimination principle. The problem in fact comes from a basic tension between respecting reasonable patient preferences and other ways of ranking treatment options. As such, adopting a QALY system does not solve the problem they identify. (shrink)

Across the country, legal and health care professionals who understand that health outcomes are most influenced by social and environmental conditions have improved patient health by adopting the interdisciplinary MLP health care delivery model. However, the MLP field cannot advance population health, let alone long-term health equity, until it addresses the structural determinants of health inequity that are rooted in discrimination, segregation, and other forms of racial and ethnic subordination.

A patient’s age serves as a very useful guide to physicians in deciding what disease manifestations to anticipate, what treatment to offer for certain conditions, and how to prepare for possible emergencies. In the context of the COVID-19 pandemic, determining treatment options on the basis of a patient’s chronological age can easily give rise to unjustified discrimination. This is of particular significance in situations where the allocation of scarce critical care resources could have a direct impact on (...) who will live and who will die. This paper examines the fairness of recommendations contained in resource allocation guidelines in the Philippines that have implications for the way elderly patients could be treated or excluded from some forms of critical care treatment in the context of the ongoing Corona virus emergency. (shrink)

Many ethical theorists believe that a given distribution of healthcare is morally justified only if (1) it is cost-effective and (2) it does not discriminate against older adults and disabled people. However, if (3) cost-effectiveness involves maximizing the number of quality-adjusted life-years (QALYs) added by a given unit of healthcare resource, or cost, it seems the pursuit of cost-effectiveness will inevitably discriminate against older adults and disabled patients. I show why this trilemma is harder to escape than some theorists think. (...) We cannot avoid it by using age- or disability-weighted QALY scores, for example. I then explain why there is no sense of “discrimination” on which discrimination isbothunjust, and thus something healthcare rationing must avoid,andsomething cost-effective healthcare rationing inevitably involves. I go on to argue that many of the reasons we have for not favoring rationing that maximizes QALYs outside the healthcare context apply in healthcare as well. Thus, claim (1) above is dubious. (shrink)

Prenatal Diagnosis (PD) includes diagnostic procedures carried out during the antenatal period, together with Preconception Screening (PS) of prospective parents, and prenatal genetic diagnosis (PGD). The purpose of all these procedures is to provide prospective parents with opportunities to decide whether or not to have a child who will be diseased or disabled. Selection decisions determine what kinds of children are brought into existence; the ability to make these decisions is of huge ethical significance. It raises connected questions about (...) class='Hi'>discrimination, the social status of disabled people and the medicalisation of disability; patient vulnerability and the power of the medical and counselling professions to influence decision-making; and the conceptualisation of selection as a public health measure and even as eugenic. In this paper, I outline the ethical issues raised by prenatal diagnosis and describe some of the arguments which have been elaborated in relation to the permissibility of selecting against (and occasionally for) diseases and disabilities. I conclude that there are no good arguments against the prevention of disability through PD but that providing adequate information for decision-making and facilitating uncoerced individual decisions requires further attention. (shrink)

The failure of psychiatry to validate its diagnostic constructs is often attributed to the prioritizing of reliability over validity in the structure and content of the Diagnostic and Statistical Manual of Mental Disorders. Here I argue that in fact what has retarded biomedical approaches to psychopathology is unwarranted optimism about diagnostic discrimination: the assumption that our diagnostic tests group patients together in ways that allow for relevant facts about mental disorder to be discovered. I consider the Research Domain Criteria (...) framework as a new paradigm for classifying objects of psychiatric research that solves some of the challenges brought on by this assumption. (shrink)

Volume 25, Issue 3, March 2025, Page 40-42.

Frailty is a state of increased vulnerability to poor resolution of homeostasis after a stressor event. Frailty is most frequently assessed in the old using the Clinical Frailty Scale (CSF) which ranks frailty from 1 to 9. This assessment typically takes less than one minute and is not validated in patients with learning difficulties or those under 65 years old. The National Institute for Health and Care Excellence (NICE) developed guidelines that use “frailty” as one of the priority-setting criteria for (...) how scarce, but potentially lifesaving, health care resources should be allocated during the COVID-19 pandemic. Similar guidelines have been developed elsewhere. This paper discusses the ethical implications of such rationing and argues that this is an unproven and ethically problematic form of health care rationing. It specifically discusses: (1) how the frailty ascription becomes a self-fulfilling prophecy, (2) the problematic use of “frailty” in COVID-19 “triage,” (3) the circularity of the link between age and frailty, (4) indirect discrimination because of the use of a seemingly neutral criterion in health care rationing, and (5) the difficult link between comorbidities and frailty. It is found that there was no research into the use of global frailty scores as a criterion for access to acute treatment before January 2020 and so it is concerning how readily frailty scoring has been adopted to ration access to potentially lifesaving treatments. Existing gerontological frailty scoring systems have not been developed for this purpose, and repurposing them creates significant ethical issues. (shrink)

In the article “On Avoiding Deep Dementia,” Norman Cantor defends a position that I suspect many readers share. In my years writing and speaking on advance directives and dementia, I've found that most people support one of two positions. They are convinced either that advance choices should control the treatment dementia patients receive or that the welfare of a person with dementia should sometimes take priority over earlier choices. As Cantor points out, I support the second position.I agree with several (...) of Cantor's arguments. Where Cantor and I part ways is over the degree of control that advance directives should exert over the care of persons with moderate dementia. Although I don't welcome the prospect of living with dementia, I believe that people with the condition should be represented in the debate over treatment standards. It's not surprising that many, perhaps most, people unaffected by dementia think that their preferences should control the care they would receive as dementia patients. But people taking this position are neglecting the concerns and interests they may have as dementia patients. (shrink)

Artificial intelligence holds great promise for improved health‐care outcomes. But it also poses substantial new hazards, including algorithmic discrimination. For example, an algorithm used to identify candidates for beneficial “high risk care management” programs routinely failed to select racial minorities. Furthermore, some algorithms deliberately adjust for race in ways that divert resources away from minority patients. To illustrate, algorithms have underestimated African Americans’ risks of kidney stones and death from heart failure. Algorithmic discrimination can violate Title VI of (...) the Civil Rights Act and Section 1557 of the Affordable Care Act when it unjustifiably disadvantages underserved populations. This article urges that both legal and technical tools be deployed to promote AI fairness. Plaintiffs should be able to assert disparate impact claims in health‐care litigation, and Congress should enact an Algorithmic Accountability Act. In addition, fairness should be a key element in designing, implementing, validating, and employing AI. (shrink)

Anxiety patients over-generalize fear, possibly because of an incapacity to discriminate threat and safety signals. Discrimination trainings are promising approaches for reducing such fear over-generalization. Here we investigated the efficacy of a fear-relevant vs. a fear-irrelevant discrimination training on fear generalization and whether the effects are increased with feedback during training. Eighty participants underwent two fear acquisition blocks, during which one face, but not another face, was associated with a female scream. During two generalization blocks, both CSs plus (...) four morphs were presented. Between these generalization blocks, half of the participants underwent a fear-relevant discrimination training with or without feedback and the other half a fear-irrelevant discrimination training with or without feedback. US expectancy, arousal, valence ratings, and skin conductance responses indicated successful fear acquisition. Importantly, fear-relevant vs. fear-irrelevant discrimination trainings and feedback vs. no feedback reduced generalization as reflected in US expectancy ratings independently from one another. No effects of training condition were found for arousal and valence ratings or SCR. In summary, this is a first indication that fear-relevant discrimination training and feedback can improve the discrimination between threat and safety signals in healthy individuals, at least for learning-related evaluations, but not evaluations of valence or arousal. (shrink)

Congress passed the Genetic Information Nondiscrimination Act of 2008 in order to remove a perceived barrier to clinical genetic testing. By banning health insurance companies and employers from discriminating against an individual based on his or her genetic information, legislators hoped that patients would be encouraged to seek genetic testing that could improve health outcomes and provide opportunities for preventive measures. Their explicit legislative goal was to fully protect the public from discrimination and allay their concerns about the potential (...) for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies.However, GINA left a number of issues unresolved, most notably failing to define the concept of disease manifestation. GINA was structured such that it only provides protection against misuse of genetic information up until the point when an individual's disease has manifested. It protects an individual with a genetic predisposition for a disease, but not an individual actively suffering from that disease. (shrink)

In this issue, Zakout discusses European Union (EU) legal provisions for inclusion of patients of all types in clinical trials.1 Shee highlights the unfortunate failure to include adequate numbers of older adults and adults with disabilities in clinical trials of anti-cancer agents. We agree with her argument that this is an ethical issue as well as a scientific and clinical issue.

Pathological tremor is a common but highly complex movement disorder, affecting ~5% of population older than 65 years. Different methodologies have been proposed for its quantification. Nevertheless, the discrimination between Parkinson’s disease tremor and essential tremor remains a daunting clinical challenge, greatly impacting patient treatment and basic research. Here, we propose and compare several movement-based and electromyography-based tremor quantification metrics. For the latter, we identified individual motor unit discharge patterns from high-density surface electromyograms and characterized the neural drive (...) to a single muscle and how it relates to other affected muscles in 27 Parkinson’s disease and 27 essential tremor patients. We also computed several metrics from the literature. The most discriminative metrics were the symmetry of the neural drive to muscles, motor unit synchronization, and the mean log power of the tremor harmonics in movement recordings. Noteworthily, the first two most discriminative metrics were proposed in this study. We then used decision tree modelling to find the most discriminative combinations of individual metrics, which increased the accuracy of tremor type discrimination to 94%. In summary, the proposed neural drive-based metrics were the most accurate at discriminating and characterizing the two most common pathological tremor types. (shrink)

Quite early in the Covid-19 pandemic, a recommendation was issued in Germany to address potential scarcity scenarios in hospital intensive care units. At its core, the recommendation from Germany’s medical professional societies stated that, in the event of overcrowded ICUs, physicians should base the selection of patients who could still be admitted on the likelihood of success for each individual in need (DIVI 2021). The purpose of focusing on the likelihood of success is to use the available resources to help (...) the greatest possible number of people in need effectively. However, legal scholars have repeatedly argued that a lottery-based solution would be far more suitable for such tragic rescue conflicts. This perspective was also adopted by some disability advocates, who fear the risk of discrimination against people with disabilities in scarcity scenarios, as their chances of success are often presumed to be systematically lower than those of people without disabilities. From an ethical standpoint, this raises the legitimate question of the conditions under which a decision-making criterion implies indirect discrimination against a particular group of people. ----- Schon recht früh in der Covid-19-Pandemie wurde in Deutschland eine Empfehlung für mögliche Knappheitsszenarien auf den Intensivstationen der Krankenkenhäuser herausgegeben. Im Kern besagt die Empfehlung der deutschen medizinischen Fachgesellschaften, die Ärzteschaft solle im Falle überfüllter Intensivstationen die Auswahl derjenigen, die in einem solchen Fall nochmal aufgenommen werden können, an der Erfolgsaussicht der einzelnen Bedürftigen festmachen. Der Zweck einer Orientierung an der Erfolgsaussicht besteht darin, mit den vorhandenen Ressourcen einer möglichst großen Anzahl an Bedürftigen erfolgreich helfen zu können. Insbesondere von Juristen wurde jedoch auch immer wieder argumentiert, eine Lotterie-Lösung sei sehr viel geeigneter für derartige tragische Rettungskonflikte. Eine solche Auffassung wurde auch von einigen Behindertenvertreter:innen übernommen, die eine Gefahr der Benachteiligung von Menschen mit Behinderung in Knappheitsszenarien befürchten, denn bei ihnen dürften die Erfolgsaussichten regelhaft schlechter sein als bei Menschen ohne Behinderung. In ethischer Hinsicht wurde hier also die berechtigte Frage aufgeworfen, unter welchen Bedingungen ein Entscheidungskriterium eine indirekte Diskriminierung einer bestimmten Personengruppe impliziert. (shrink)

When the Covid‐19 pandemic reached the United States in spring 2020, many states and hospitals announced crisis standards of care plans that used age as a categorical exclusion criterion. Such age choosing was quickly flagged as discriminatory, and so some states and hospitals shifted to embedding age as a tiebreaker deeper in their plans. Different rationales were given for using age as a tiebreaker: that younger patients were more likely to survive than older patients, that saving younger patients would save (...) more life years, and that younger patients deserved a chance to live through life's stages. We provide a critical analysis of these three rationales, noting the differences between them, and then questioning the ethical and legal justifications for such age choosing. (shrink)

Whole–exome sequencing (WES) has increased our ability to analyze large parts of the human genome, bringing with it a plethora of ethical, legal, and social implications. A topic dominating discussion of WES is identification of “secondary findings” (SFs), defined as the identification of risk in an asymptomatic individual unrelated to the indication for the test. SFs can have considerable psychosocial impact on patients and families, and patients with an SF may have concerns regarding genomic privacy and genetic discrimination. The (...) Genetic Information Nondiscrimination Act of 2008 (GINA) currently excludes protections for members of the military. This may cause concern in military members and families regarding genetic discrimination when considering genetic testing. In this report, we discuss a case involving a patient and family in which a secondary finding was discovered by WES. The family members have careers in the U.S. military, and a risk–predisposing condition could negatively affect employment. While beneficial medical management changes were made, the information placed exceptional stress on the family, who were forced to navigate career–sensitive “extra–medical” issues, to consider the impacts of uncovering risk–predisposition, and to manage the privacy of their genetic information. We highlight how information obtained from WES may collide with these issues and emphasize the importance of genetic counseling for anyone undergoing WES. (shrink)

Ageism has unfortunately become a salient phenomenon during the COVID-19 pandemic. In particular, triage decisions based on age have been hotly discussed. In this article, I first defend that, although there are ethical reasons (founded on the principles of benefit and fairness) to consider the age of patients in triage dilemmas, using age as a categorical exclusion is an unjustifiable ageist practice. Then, I argue that ageism during the pandemic has been fueled by media narratives and unfair assumptions which have (...) led to an ethically problematic group homogenization of the older population. Finally, I conclude that an intersectional perspective can shed light on further controversies on ageism and triage in the post-pandemic future. (shrink)

NICE must not say people are not worth treatingThe National Institute for Health and Clinical Excellence has proposed that drugs for the treatment of dementia be banned to National Health Service patients on the grounds that their cost is too high and “outside the range of cost effectiveness that might be considered appropriate for the NHS”i.1This is despite NICE’s admission that these drugs are effective in the treatment of Alzheimer’s disease and despite NICE having approved even more expensive treatments. The (...) effect is that thousands of Alzheimer’s patients will be denied the only treatment available. It is difficult to think of this as anything but wickedness or folly or more likely both. At the same time, and with no apparent sense of irony, NICE has launched a public consultation document3 on its guidelines on social value judgments. As we shall see these guidelines are ethically illiterate as well as socially divisive.Assuming permanently scarce resources it is clearly crucial that such healthcare resources as are available are not wasted. This point is often made in terms of cost effectiveness and it is argued, not implausibly, that to talk of cost effectiveness implies that we are able to measure just how cost effective each treatment is. To do so of course we need a standard of measurement. NICE has adopted the ubiquitous, but justly infamous QALY, the Quality Adjusted Life Year.The QALY combines life expectancy after treatment with measures of the expected quality of that life. There are two ways in which QALYS can be used. They might be used to determine which of rival therapies to give to a particular patient or which procedure to use to treat a particular condition, in short which of two different treatments is the more …. (shrink)

Background Equitable care is a fundamental value in the nursing profession. Healthcare workers have both a moral and professional duty to ensure that they do not discriminate. Aim This study aimed to explore how patients perceive equitable nursing care. Research design, participants, and research context This descriptive phenomenological qualitative research study used purposeful sampling to select 17 patients from various departments of a general hospital in southern Iran. The participants were then interviewed using a semi-structured in-depth interview format, which aimed (...) to delve into their experiences with equitable nursing care. The collected data were analyzed using Colaizzi's seven-step method and MAXQDA20 software. Ethical considerations Oral and written information about the study was provided before the participants gave their written consent. The transcribed interviews were de-identified. The study was approved by the Ethics Committee of Jiroft University of Medical Sciences. Findings The data analysis of the study identified three main themes and six subthemes that were related to the experiences of patients with equitable nursing care. The first theme, equitable care, encompassed subthemes such as nurses’ dedicated efforts to facilitate patient recovery and adherence to ethical behavior. The second theme, unconscious causes of inequitable nursing care, included subthemes such as unintentional discrimination stemming from organizational constraints and unconscious biases resulting from a lack of knowledge and skills. The third theme, discriminatory care, comprised subthemes such as deliberate discrimination based on personal traits and selective discrimination. Conclusion The study findings indicate that achieving equitable nursing care requires a multifaceted approach. This includes effective hospital management, organizational reforms, and regulatory enhancements. Additionally, it is crucial to pay close attention to the needs of patients, enhance nurses’ theoretical and practical skills in providing equitable care, fostering a culture of equality within healthcare settings, and consider the personality dimensions and moral characteristics of nurses. (shrink)

Background: Coercion in mental healthcare has led to ethical debate on its nature and use. However, few studies have explicitly explored patients’ moral evaluations of coercion. Aim: The purpose of this study is to increase understanding of patients’ moral views and considerations regarding coercion. Research design: Semi-structured focus-group and individual interviews were conducted and data were analysed through a thematic content analysis. Participants and research context: A total of 24 adult participants with various mental health problems and experiences with coercion (...) were interviewed in 2012–2013 in three regions of Norway. Ethical considerations: Ethical approval and permissions were obtained according to required procedures. Informed consent and confidentiality were also secured. Findings: Ethical considerations regarding coercion included seven main themes: the need for alternative perspectives and solutions, the existence of a danger or harm to oneself or others, the problem of paternalism, the problem of discrimination and stigma, the need for proportionality, the importance of the content and consequences of coercion and concerns about way that coercion is carried out in practice. Discussion: The participants’ views and considerations are in line with previous research and reflect the range of normative arguments commonly encountered in ethical and legal debates. The study accentuates the significance of institutional factors and alternative voluntary treatment opportunities, as well as the legal and ethical principles of proportionality and purposefulness, in moral evaluations of coercion. Conclusion: Broader perspectives on coercion are required to comprehend its ethical challenges and derive possible solutions to these from a patient perspective. (shrink)