STIGMATIZATION AND PUBLIC HEALTH ETHICS

Encouraged by the success of smoking denormalization strategies as a tobacco‐control measure, public health institutions are adopting a similar approach to other health behaviors. For example, a recent controversial ad campaign in New York explicitly aimed to denormalize HIV/AIDS amongst gay men. Authors such as Scott Burris have argued that efforts like this are tantamount to stigmatization and that such stigmatization is unethical because it is dehumanizing. Others have offered a limited endorsement of denormalization/stigmatization campaigns as being justified on consequentialist grounds; namely, that the potential public health benefits outweigh any stigmatizing side effects. In this paper, I examine and reject the blanket condemnation of stigmatization efforts in public health. I argue that the moral status of such efforts are best evaluated within a contractualist, as opposed to a consequentialist, framework. Contractualism in public health ethics asks whether a particular stigmatizing policy could be justified to reasonable individuals who do not know whether they will be affected by that policy. Using this approach, I argue that it is sometimes permissible for public health institutions to engage in health‐related stigmatization.     

Stigmatization in the long-term treatment of psychotic disorders

Stigma is linked to negative prejudices without examining whether there is any justification for such behaviour. Over time, various efforts have been made to reduce prejudice toward people with mental illness. Yet, the World Health Organization (WHO) World Health Report still describes stigma as one of the greatest obstacles to the treatment of mental illness. While schizophrenia, among other mental illnesses, is the most stigmatized even to the point that some want the name of the illness to be hidden or changed, patients with bipolar illness may also be exposed to stigma. The degree of stigmatization has been found to be positively associated with the severity of the mental disorder, and stigma is carried out not only by patients but also by their families in correlation with the severity. Tragically, people with mental illness themselves are as negative in their opinions about mental illness as is the general public, and concerns about stigma adversely affect self-esteem and adaptive social functioning. There are many programmes worldwide for the fight against stigmatization, and there is clear recognition of the fact that stigma can only be successfully eliminated if the programme becomes a normal part of health service rather than of campaigns of limited duration.     

Stigmatization of patients suffering from schizophrenia

For the general public, but also for healthcare professionals, schizophrenia is still one of those areas of medicine connected with feelings of unease, fear and prejudice. These feelings lead to stigmatization and discrimination which are unjust processes which put patients suffering from mental illnesses into undesirable and unequal positions. Aim of this research was to establish the extent of stigmatization of mentally ill patients among the population of healthcare professionals and future healthcare professionals and if they differ from general population. Results show that stigmatization of schizophrenic patients is high among all included populations. Although there were no statistical differences between groups regarding the assessment of schizophrenic patients, nurses employed in psychiatric wards exhibited a tendency towards higher acceptance of schizophrenic patients, as well as better understanding of that illness. This data emphasizes a growing need for continuous education of general population but also of healthcare professionals.     

Adjusting the focus: A public health ethics approach to data research

This paper contends that a research ethics approach to the regulation of health data research is unhelpful in the era of population‐level research and big data because it results in a primary focus on consent (meta‐, broad, dynamic and/or specific consent). Two recent guidelines – the 2016 WMA Declaration of Taipei on ethical considerations regarding health databases and biobanks and the revised CIOMS International ethical guidelines for health‐related research involving humans – both focus on the growing reliance on health data for research. But as research ethics documents, they remain (to varying degrees) focused on consent and individual control of data use. Many current and future uses of health data make individual consent impractical, if not impossible. Many of the risks of secondary data use apply to communities and stakeholders rather than individual data subjects. Shifting from a research ethics perspective to a public health lens brings a different set of issues into view: how are the benefits and burdens of data use distributed, how can data research empower communities, who has legitimate decision‐making capacity? I propose that a public health ethics framework – based on public benefit, proportionality, equity, trust and accountability – provides more appropriate tools for assessing the ethical uses of health data. The main advantage of a public health approach for data research is that it is more likely to foster debate about power, justice and equity and to highlight the complexity of deciding when data use is in the public interest.     

Stigmatized Students: Age,Sex, and Ethnicity Effects in the Stigmatization of Obesity

Objective: To assess the stigmatization of obesity relative to the stigmatization of various disabilities among young men and women. Attitudes across ethnic groups were compared. In addition, these findings were compared with data showing severe stigmatization of obesity among children. Research Methods and Procedures: Participants included 356 university students (56% women; mean age, 20.6 years; mean BMI, 23.3 kg/m²; range, 14.4 to 45.0 kg/m²) who ranked six drawings of same‐sex peers in order of how well they liked each person. The drawings showed adults with obesity, various disabilities, or no disability. These rankings were compared with those obtained through a similar procedure with 458 fifth‐ and sixth‐grade children. Results: Obesity was highly stigmatized relative to physical disabilities. African‐American women liked obese peers more than did African‐American men, white men, or white women [F (1, 216) = 4.02, p < 0.05]. Overweight and obese participants were no less stigmatizing of obesity than normal weight participants. Adults were more accepting than children of their obese peers [t (761) = 9.16, p < 0.001]. Discussion: Although the stigmatization of obesity was high among participants overall, African‐American women seemed to have more positive attitudes toward obesity than did white women, white men, or African‐American men. Participants’ weight did not affect their stigmatization of obesity: obese and overweight adults were as highly stigmatizing of obesity as non‐overweight adults. Such internalized stigmatization could help to explain the low self‐esteem and poor body image among obese young adults. However, adults seemed to have more positive attitudes about obesity than children. An understanding of the factors that limit the stigma of obesity among African‐American women could help efforts to reduce stigma.     

Hastening death and respect for dignity: Kantianism at the end of life

Suppose that a young athlete has just become quadriplegic. He expects to live several more decades, but out of self‐interest he autonomously chooses to engage in physician‐assisted suicide (PAS) or voluntary active euthanasia (VAE). Some of us are unsure whether he or his physician would be acting rightly in ending his life. One basis for such doubt is the notion that persons have dignity in a Kantian sense. This paper probes responses that David Velleman and Frances Kamm have suggested to the question of whether participating in PAS or VAE to benefit oneself, as the young man might, respects the dignity of persons, specified in an orthodox Kantian way. Velleman claims that it does not, while Kamm insists that, in certain circumstances, it does. I argue against Kamm's position. I go on to contend that while orthodox Kantianism might provide a basis for moral concern regarding the case of the young quadriplegic, it suffers from two serious shortcomings. First, it implies that terminally ill patients are wrong to request VAE or engage in PAS to avoid intense suffering, at least when this suffering has not yet overwhelmed their reason. Second, orthodox Kantianism implies that it is wrong for physicians to withdraw such patients from life‐sustaining treatments, even if they request it. To remedy these shortcomings, I sketch an unorthodox Kantian account of respect for the dignity of persons. This account promises to capture the idea that it would be morally problematic for doctors to help the young quadriplegic to die, but to avoid the shortcomings of an orthodox Kantian account.     

Obese Children,Adults and Senior Citizens in the Eyes of the General Public: Results of a Representative Study on Stigma and Causation of Obesity

Obese individuals are blamed for their excess weight based on causal attribution to the individual. It is unclear whether obese individuals of different age groups and gender are faced with the same amount of stigmatization. This information is important in order to identify groups of individuals at risk for higher stigmatization and discrimination. A telephone interview was conducted in a representative sample of 3,003 participants. Experimental manipulation was realized by vignettes describing obese and normal-weight children, adults and senior citizens. Stigmatizing attitudes were measured by semantic differential. Causal attribution was assessed. Internal factors were rated with highest agreement rates as a cause for the vignette''s obesity. Lack of activity behavior and eating too much are the most supported causes. Importance of causes differed for the different vignettes. For the child, external causes were considered more important. The overweight vignette was rated consistently more negatively. Higher educational attainment and personal obesity were associated with lower stigmatizing attitudes. The vignette of the obese child was rated more negatively compared to that of an adult or senior citizen. Obesity is seen as a controllable condition, but for children external factors are seen as well. Despite this finding, they are faced with higher stigmatizing attitudes in the general public, contradicting attribution theory assumptions. Internal and external attribution were found to be inter-correlated. Obese children are the population most at risk for being confronted with stigmatization, making them a target point in stigma-reduction campaigns.     

Aids, Policy and Bioethics: Ethical Dilemmas Facing China in HIV Prevention

The present situation of the HIV/AIDS epidemic is very grim in China. The probability of China becoming a country with a high prevalence of HIV/AIDS cannot be excluded because there have been factors which promote the wide spread of HIV if we fail to take timely action to prevent it at the opportune moment. However, China's HIV prevention policy is inadequate. Health professionals and programmers believed that they could take a conventional public health approach to cope with the HIV epidemic. They simply ignored the fact that HIV infection is an epidemic so special that their approach is not effective to deter the epidemic. Many health professionals and programmers bypassed ethical issues that had emerged in the prevention of the HIV epidemic. Even some health educators, sexologists and officials believe that `AIDS is the punishment for promiscuity', and this belief has led to discrimination and stigmatization of AIDS patients, HIV positive people, their family members and high risk groups. Although homosexuality is not illegal, the police can always find any reason to detain homosexuals. A difficult ethical issue is about the laws prohibiting prostitution and drug use in China which force prostitutes and intravenous drug users underground, giving them no chance to access information, education and the services needed to protect them. The dilemma facing China is whether to stay with a restrictive policy for the reason of ideology cleansing or to turn to a more supportive policy. It is necessary to have some change in the ethical framework to evaluate the action in HIV prevention. Tolerance should be the first ethical principle.     

AIDS, policy and bioethics: ethical dilemmas facing China in HIV prevention: a report from China

The present situation of the HIV/AIDS epidemic is very grim in China. The probability of China becoming a country with a high prevalence of HIV/AIDS cannot be excluded because there have been factors which promote the wide spread of HIV if we fail to take timely action to prevent it at the opportune moment. However, China's HIV prevention policy is inadequate. Health professionals and programmers believed that they could take a conventional public health approach to cope with the HIV epidemic. They simply ignored the fact that HIV infection is an epidemic so special that their approach is not effective to deter the epidemic. Many health professionals and programmers bypassed ethical issues that had emerged in the prevention of the HIV epidemic. Even some health educators, sexologists and officials believe that `AIDS is the punishment for promiscuity', and this belief has led to discrimination and stigmatization of AIDS patients, HIV positive people, their family members and high risk groups. Although homosexuality is not illegal, the police can always find any reason to detain homosexuals. A difficult ethical issue is about the laws prohibiting prostitution and drug use in China which force prostitutes and intravenous drug users underground, giving them no chance to access information, education and the services needed to protect them. The dilemma facing China is whether to stay with a restrictive policy for the reason of ideology cleansing or to turn to a more supportive policy. It is necessary to have some change in the ethical framework to evaluate the action in HIV prevention. Tolerance should be the first ethical principle.     

Epigenetics and Future Generations

Recent evidence of intergenerational epigenetic programming of disease risk broadens the scope of public health preventive interventions to future generations, i.e. non existing people. Due to the transmission of epigenetic predispositions, lifestyles such as smoking or unhealthy diet might affect the health of populations across several generations. While public policy for the health of future generations can be justified through impersonal considerations, such as maximizing aggregate well‐being, in this article we explore whether there are rights‐based obligations supervening on intergenerational epigenetic programming despite the non‐identity argument, which challenges this rationale in case of policies that affect the number and identity of future people. We propose that rights based obligations grounded in the interests of non‐existing people might fall upon existing people when generations overlap. In particular, if environmental exposure in F0 (i.e. existing people) will affect the health of F2 (i.e. non‐existing people) through epigenetic programming, then F1 (i.e. existing and overlapping with both F0 and F2) might face increased costs to address F2's condition in the future: this might generate obligations upon F0 from various distributive principles, such as the principle of equal opportunity for well being.     

Allocation of scarce resources in Africa during COVID‐19: Utility and justice for the bottom of the pyramid?

The COVID‐19 pandemic has raised important universal public health challenges. Conceiving ethical responses to these challenges is a public health imperative but must take context into account. This is particularly important in sub‐Saharan Africa (SSA). In this paper, we examine how some of the ethical recommendations offered so far in high‐income countries might appear from a SSA perspective. We also reflect on some of the key ethical challenges raised by the COVID‐19 pandemic in low‐income countries suffering from chronic shortages in health care resources, and chronic high morbidity and mortality from non‐COVID‐19 causes. A parallel is drawn between the distribution of severity of COVID‐19 disease and the classic “Fortune at the bottom of the pyramid” model that is relevant in SSA. Focusing allocation of resources during COVID‐19 on the ‘thick’ part of the pyramid in Low‐to‐Middle Income Countries (LMICs) could be ethically justified on utilitarian and social justice grounds, since it prioritizes a large number of persons who have been economically and socially marginalized. During the pandemic, importing allocation frameworks focused on the apex of the pyramid from the global north may therefore not always be appropriate. In a post‐COVID‐19 world, we need to think strategically about how health care systems can be financed and structured to ensure broad access to adequate health care for all who need it. The root problems underlying health inequity, exposed by COVID‐19, must be addressed, not just to prepare for the next pandemic, but to care for people in resource poor settings in non‐pandemic times.     

Weight Stigmatization and Ideological Beliefs: Relation to Psychological Functioning in Obese Adults

Objective: This study evaluated the relation among weight‐based stigmatization, ideological beliefs about weight, and psychological functioning in an obese, treatment‐seeking sample. Research Methods and Procedure: Ninety‐three obese, treatment‐seeking adults (24 men and 69 women) completed a battery of self‐report questionnaires measuring psychological adjustment, attitudes about weight, belief in the controllability of weight, and the frequency of weight‐based stigmatization. Results: Weight‐based stigmatization was a common experience for participants. Frequency of stigmatizing experiences was positively associated with depression, general psychiatric symptoms, and body image disturbance, and negatively associated with self‐esteem. Further, participants’ own negative attitudes about weight problems were associated with their psychological distress and moderated the relation between the experience of stigmatization and body image. Discussion: Weight‐based stigmatization is a common experience for obese individuals seeking weight loss treatment and appears to contribute to poor mental health adjustment. The negative effects of these experiences are particularly damaging for those who hold strong antifat beliefs.     

Constructing citizen engagement in health research priority‐setting to attend to dynamics of power and difference

Engaging citizens is vital to achieving people‐centred health research. This paper aims to put attention to dynamics of power and dynamics of difference back at the centre of citizen engagement in health research priority‐setting. Without attention to power and difference, engagement can lead to presence without voice and voice without influence, particularly for disadvantaged and marginalised groups. By analysing six key bodies of literature, the paper first identifies the different components of engagement—who initiates, for what purpose, who participates, and how they participate—and the dynamics of power and dynamics of difference relevant to them. For each component of engagement, the ethical considerations relating to those dimensions of power and dimensions of difference are characterised for the research priority‐setting context and preliminary guidance on how they might be addressed is provided. An initial framework comprised of a series of questions reflecting these ethical considerations has been developed for use by researchers and citizens when designing engagement processes for research projects. Where researchers and citizens attend to the framework's questions and then revise their priority‐setting processes’ design to better represent diversity and mitigate power disparities, more inclusive citizen engagement is promoted. Disadvantaged and marginalised groups are more likely to be present and heard, which, in turn, will help generate research projects with topics and questions that encompass and more accurately reflect their health needs.     

Characterization of Courtesy Stigma Perceived by Parents of Overweight Children with Bardet-Biedl Syndrome

Background

A child’s obesity is generally perceived by the public to be under the control of the child’s parents. While the health consequences of childhood obesity are well understood, less is known about psychological and social effects of having an obese child on parents. We set out to characterize stigma and courtesy stigma experiences surrounding obesity among children with Bardet-Biedl syndrome (BBS), a multisystem genetic disorder, and their parents.

Methods

Twenty-eight parents of children with BBS participated in semi-structured interviews informed by social stigmatization theory, which describes courtesy stigma as parental perception of stigmatization by association with a stigmatized child. Parents were asked to describe such experiences.

Results

Parents of children with BBS reported the child’s obesity as the most frequent target of stigmatization. They perceived health care providers as the predominant source of courtesy stigma, describing interactions that resulted in feeling devalued and judged as incompetent parents.

Conclusions

Parents of children with BBS feel blamed by others for their child’s obesity and described experiences that suggest health care providers may contribute to courtesy stigma and thus impede effective communication about managing obesity. Health care providers may reinforce parental feelings of guilt and responsibility by repeating information parents may have previously heard and ignoring extremely challenging barriers to weight management, such as a genetic predisposition to obesity. Strategies to understand and incorporate parents’ perceptions and causal attributions of their children’s weight may improve communication about weight control.     

Simple foraging rules in competitive environments can generate socially structured populations

Social vertebrates commonly form foraging groups whose members repeatedly interact with one another and are often genetically related. Many species also exhibit within‐population specializations, which can range from preferences to forage in particular areas through to specializing on the type of prey they catch. However, within‐population structure in foraging groups, behavioral homogeneity in foraging behavior, and relatedness could be outcomes of behavioral interactions rather than underlying drivers. We present a simple process by which grouping among foragers emerges and is maintained across generations. We introduce agent‐based models to investigate (1) whether a simple rule (keep foraging with the same individuals when you were successful) leads to stable social community structure, and (2) whether this structure is robust to demographic changes and becomes kin‐structured over time. We find the rapid emergence of kin‐structured populations and the presence of foraging groups that control, or specialize on, a particular food resource. This pattern is strongest in small populations, mirroring empirical observations. Our results suggest that group stability can emerge as a product of network self‐organization and, in doing so, may provide the necessary conditions for the evolution of more sophisticated processes, such as social learning. This taxonomically general social process has implications for our understanding of the links between population, genetic, and social structures.     

Post‐traumatic stress disorder: a state‐of‐the‐art review of evidence and challenges

Post‐traumatic stress disorder (PTSD) is arguably the most common psychiatric disorder to arise after exposure to a traumatic event. Since its formal introduction in the DSM‐III in 1980, knowledge has grown significantly regarding its causes, maintaining mechanisms and treatments. Despite this increased understanding, however, the actual definition of the disorder remains controversial. The DSM‐5 and ICD‐11 define the disorder differently, reflecting disagreements in the field about whether the construct of PTSD should encompass a broad array of psychological manifestations that arise after trauma or should be focused more specifically on trauma memory phenomena. This controversy over clarifying the phenotype of PTSD has limited the capacity to identify biomarkers and specific mechanisms of traumatic stress. This review provides an up‐to‐date outline of the current definitions of PTSD, its known prevalence and risk factors, the main models to explain the disorder, and evidence‐supported treatments. A major conclusion is that, although trauma‐focused cognitive behavior therapy is the best‐validated treatment for PTSD, it has stagnated over recent decades, and only two‐thirds of PTSD patients respond adequately to this intervention. Moreover, most people with PTSD do not access evidence‐based treatment, and this situation is much worse in low‐ and middle‐income countries. Identifying processes that can overcome these major barriers to better management of people with PTSD remains an outstanding challenge.     

Ordinary people doing extraordinary things: responses to stigmatization in comparative perspective

Abstract

This special issue offers a first systematic qualitative cross-national exploration of how diverse minority groups respond to stigmatization in a wide variety of contexts. This research is the culmination of a coordinated study of stigmatized groups in Brazil, Israel and the USA, as well as of connected research projects conducted in Canada, France, South Africa and Sweden. The issue sheds light on the range of destigmatization strategies ordinary people adopt in the course of their daily life. Articles analyse the cultural frames they mobilize to make sense of their experiences and to determine how to respond; how they negotiate and transform social and symbolic boundaries; and how responses are enabled and constrained by institutions, national ideologies, cultural repertoires and contexts. The similarities and differences across sites provide points of departure for further systematic research, which is particularly needed in light of the challenges for liberal democracy raised by multiculturalism.     

Personal stigma in schizophrenia spectrum disorders: a systematic review of prevalence rates,correlates, impact and interventions

A systematic electronic PubMed, Medline and Web of Science database search was conducted regarding the prevalence, correlates, and effects of personal stigma (i.e., perceived and experienced stigmatization and self‐stigma) in patients with schizophrenia spectrum disorders. Of 54 studies (n=5,871), published from 1994 to 2011, 23 (42.6%) reported on prevalence rates, and 44 (81.5%) reported on correlates and/or consequences of perceived or experienced stigmatization or self‐stigma. Only two specific personal stigma intervention studies were found. On average, 64.5% (range: 45.0–80.0%) of patients perceived stigma, 55.9% (range: 22.5–96.0%) actually experienced stigma, and 49.2% (range: 27.9–77.0%) reported alienation (shame) as the most common aspect of self‐stigma. While socio‐demographic variables were only marginally associated with stigma, psychosocial variables, especially lower quality of life, showed overall significant correlations, and illness‐related factors showed heterogeneous associations, except for social anxiety that was unequivocally associated with personal stigma. The prevalence and impact of personal stigma on individual outcomes among schizophrenia spectrum disorder patients are well characterized, yet measures and methods differ significantly. By contrast, research regarding the evolution of personal stigma through the illness course and, particularly, specific intervention studies, which should be conducted utilizing standardized methods and outcomes, are sorely lacking.     

Surveillance and control of asymptomatic carriers of drug‐resistant bacteria

Drug‐resistant bacterial infections constitute a major threat to global public health. Several key bacteria that are becoming increasingly resistant are among those that are ubiquitously carried by human beings and usually cause no symptoms (i.e. individuals are asymptomatic carriers) until and/or unless a precipitating event leads to symptomatic infection (and thus disease). Carriers of drug‐resistant bacteria can also transmit resistant pathogens to others, thus putting the latter at risk of resistant infections. Accumulating evidence suggests that such transmission occurs not only in hospital settings but also in the general community, although considerably more data are needed to assess the extent of this problem. Asymptomatic carriage of drug‐resistant bacteria raises important ethical questions regarding the appropriate public health response, including the degree to which it would be justified to impose burdens on asymptomatic carriers (and others) in order to prevent transmission. In this paper, we (i) summarize current evidence regarding the carriage of key drug‐resistant bacteria, noting important knowledge gaps; and (ii) explore the particular implications of existing public health ethics frameworks for policy‐making regarding asymptomatic carriers. Inter alia, we argue that the relative burdens imposed by public health measures on healthy carriers (as opposed to sick individuals) warrant careful consideration and should be proportionate to the expected public health benefits in terms of risks averted. We conclude that more surveillance and research regarding community transmission will be needed in order to clarify relevant risks and design proportionate policies, although extensive community surveillance itself would also require careful ethical consideration.