Over time, there has been a steady increase of workplace health promotion programs that aim to promote employees’ health and fitness. Previous research has focused on such program’s effectiveness, cost-savings, and barriers to engaging in workplace health promotion. The present research focuses on a downside of workplace health promotion programs that to date has not been examined before, namely the possibility that they, due to a focus on individual responsibility for one’s health, inadvertently facilitate stigmatization and discrimination of people (...) with overweight in the workplace. Study 1 shows that the presence of workplace health promotion programs is associated with increased attributions of weight controllability. Study 2 experimentally demonstrates that workplace health promotion programs emphasizing individual rather than organizational responsibility elicit weight stigma. Study 3, which was pre-registered, showed that workplace health promotion programs emphasizing individual responsibility induced weight-based discrimination in the context of promotion decisions in the workplace. Moreover, focusing on people with obesity who frequently experience weight stigma and discrimination, Study 3 showed that workplace health promotion programs highlighting individual responsibility induced employees with obesity to feel individually responsible for their health, but at the same time made them perceive weight as less controllable. Together, our research identifies workplace health promotion programs as potent catalysts of weight stigma and weight-based discrimination, especially when they emphasize individual responsibility for health outcomes. As such, we offer valuable insights for organizations who aim to design and implement workplace health promotion programs in an inclusive, non-discriminatory way that benefits all employees. (shrink)

Nursing work centers around attending to a person's health during many of life's most vulnerable moments, from birth to death. Given the high‐stakes nature of this work, it is essential for nurses to critically reflect on their individual and collective impact, which can range from healing to harmful. The purpose of this paper is to use a philosophical inquiry approach and a critical lens to explore the potential influence of critical pedagogy (how we learn what we learn) on nursing praxis (...) (why we do what we do) with the aim of disrupting stigma and discrimination within the profession. This paper draws on the works of Paulo Freire, Henry Giroux, and bell hooks to alert readers to particular windows of opportunity where an intentional adoption of critical pedagogy in nursing praxis may help the profession think differently about two important and related topics: relational violence and peer‐led knowledge mobilization. As a practice‐based and theoretically grounded profession, nurses often strive to bridge the theoretical with the practical and the individual with the systemic. Thus, developing a robust and philosophically rooted disciplinary body of knowledge is particularly important to help us defensibly grapple with the notions of truth and ethics that shape our work's very essence and impact. (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...

Public health law has focused primarily on combatting stigma through laws targeting discrimination based on attributes, when the reach of stigma extends far beyond mere appearances. By exploring the lived experience of stigmatized individuals, policy makers might more deeply understand public health problems, more appropriately create health policies, and more effectively promote positive health behaviors. Efforts to address stigma must focus on all aspects of stigma to be effective.

Despite changes in their representation and visibility, there are still serious concerns about the inclusion and day-to-day workplace challenges various groups face (e.g., women, ethnic and cultural minorities, LGBTQ+, people as they age, and those dealing with physical or mental disabilities). Men are also underrepresented in specific work fields, in particular those in HEED (Health care, Elementary Education and the Domestic sphere). Previous literature has shown that group stereotypes play an important role in maintaining these inequalities. We outline how insights (...) from research on stigma, social-identity, and self-regulation together increase our understanding of how targets are affected by and regulate negative stereotypes in the workplace. This approach starts from the basis that members of negatively-stereotyped groups are not just passive recipients of negative attitudes, stereotypes, and behaviors, but are active individuals pursuing multiple goals, such as goals for belonging and achievement. We argue that it is only by understanding stigma from the target’s perspective (e.g., how targets are affected and respond) that we can successfully address workplace inequality. Key in this understanding is that stereotypes, prejudice and discrimination have taken on much more subtle forms, with consequences for the way members of stigmatized-groups cope. These insights lead us to propose an approach to understanding barriers to workplace equality that highlights four key aspects: a) the different (often subtle) potential triggers of identity-threat in the workplace for members of stigmatized-groups, b) the ways in which members of stigmatized-groups cope with these threats, c) the role of supportive factors that mitigate potential threats and affect self-regulation, and d) potential hidden costs for the self or others of what appears at first to be effective self-regulation. The focus on threats, coping, support, and potential hidden costs helps us understand why current diversity efforts are not always successful in increasing and maintaining members of stigmatized-groups in organizations, and provides insight into how we can aid efforts to effectively lower barriers to workplace equality. (shrink)

As social and interdependent beings, we have responsibilities to each other. One of them is to recognize each other appropriately. When we fail to meet this responsibility, we often stigmatize. In this paper, I argue that the COVID-19-related stigmatization is a variation of the lack of recognition understood as an orientation to our evaluative features. Various stereotypical behaviors regarding COVID-19 become stigmatized practices because of labeling, stereotyping, separation, status loss and discrimination, and power. When people stigmatize COVID-19 victims, they (...) orient themselves to their evaluative quality of being vulnerable to the SARS-CoV-2 virus by internalizing the victims as dangerous, understanding them as separable, and being motivated to act with them differently. All this causes the COVID-19 victims to lose status and suffer discrimination for which they do not experience participatory parity in different facets of their lives, rendering the COVID-19-related stigmatization an appalling example of misrecognition. (shrink)

Genetic testing can not only provide information about diseases but also their prevalence in ethnic, gender, or other vulnerable populations. While offering the promise of significant therapeutic benefits and serving to highlight our commonality, genetic information also raises a number of sensitive human rights issues touching on identity and the perception thereof, as well as the possibility of discrimination and social stigma. It stands to reason that the results of individual screenings could haplessly be used to make general (...) assumptions about entire ethnic or gender groups. In this manner, genetic information can directly influence identity by impacting and perhaps even reframing conceptions of group rights and dimensions of self-identification, thus importing constitutional scrutiny on questions of dignity and discrimination in particular. Is there a risk of collective stigmatization deriving from discrete testing of self-identified individuals? Would such stigmatization impinge on individual dignity by the exogenous imposition of ethnic or gender/sexual identity? If so, what norms can most adequately respond if and when individual and group interests diverge? These questions are examined from a comparative perspective. (shrink)

“Privacy considerations no longer arise out of particular individual problems; rather, they express conflicts affecting everyone.”Along with the promise of assuaging the scourge of disease, the so-called genetic revolution unquestioningly imports a slew of thorny human rights issues that touch on matters such as dignity, disclosure, and the subject of this article – genetic testing and the social stigma potentially deriving therefrom.It is now rather evident that certain otherwise therapeutically promising forms of research can inadvertently involve social risks exceeding (...) the individual preoccupations of eclectic study participants. With that as the case, the following proposes to examine the peculiar stigma attached to genetic information and its potential human rights implications extending beyond the insurance and employment context. In so doing, it raises the intersection of interests between self-identified members of historically vulnerable groups and the group itself, which the law seems to take for granted in the genetics context. (shrink)

Objectives: Mental disorders are vastly underdiagnosed in low-income countries that disproportionately affect women. We aimed to evaluate the prevalence of common mental disorders in newly postpartum women, and stigma associated with mental health reporting in an Ethiopian community using a validated World Health Organization survey.Methods: The Self Reporting Questionnaire for psychological distress was administered in Amharic by nurses to 118 women aged 18–37 years who had given birth in the prior 3 months in the Glenn C. Olsen Memorial Primary (...) Hospital in Yetebon. Mental health stigma among the four nursing staff was assessed using Link and Phelan's Components of Stigma.Results: Among 118 women surveyed, 18% had a probable common mental disorder using the SRQ 4/5 cutoff and 2% admitted to suicidal thoughts. Presence of stigma in the healthcare staff was verified, including labeling, stereotyping, separating, and status loss and discrimination.Conclusion: Postpartum mental health disorders as well as stigma against such diagnoses are common in the Yetebon community. There is an urgent need for increased availability of properly trained and supervised healthcare staff in the identification and referral of postpartum women with common mental disorders. (shrink)

Stigma taints individuals with a spoiled identity and loss of status or discrimination. This article is the first to examine the stigma attached to abortion and surrogacy and consider how law may stigmatize women for failing to conform to social expectations about maternal roles. Courts should consider evidence of stigma when evaluating laws regulating abortion or surrogacy to determine whether these laws are based on impermissible gender stereotyping.

IntroductionSelf-stigma arising from public stigma is a heavy burden for people suffering from mental health problems. Both public stigma and self-stigma encompass the same three elements: stereotype, prejudice, and discrimination. Public stigma has already been successfully explored by the Stereotype Content Model and the Behaviors from Intergroup Affect and Stereotypes map. However, this is not the case for self-stigma. Therefore, this is the first study that applies SCM and the BIAS map to self- (...) class='Hi'>stigma by examining whether the effects of self-stereotypes on self-directed discrimination would be mediated by self-directed prejudices in people with mental health problems.MethodWithin a total sample of N = 823 participants, who took part in an online survey, n = 336 people reported mental health problems. Mental health and self-stereotypes, self-directed prejudice, and self-directed discrimination were assessed.ResultsStructural equation modeling supported the hypothesis that the stereotype dimensions warmth and competence negatively related to prejudice, while stronger prejudice was associated with more discrimination. Prejudice fully mediated the relationship between stereotypes and discrimination. The indirect effects of warmth and competence on active and passive self-harm were moderated by competence and warmth.DiscussionImplications for further research on self-stigma and the usage of SCM and BIAS map are discussed. (shrink)

Mental illness stigma is imposed on patients in mental illness stigma mark, mainly referring to the disease and psychological stereotypes lead to the loss of social status and discrimination. Study confirmed the existence of stigma would prevent the patient's treatment and rehabilitation, stigma issues resulting widespread concern in the world health community, which is a hotspot of research on the impact of stigma. Labeling theory and theories of stigma affect the correct label for (...) the analysis of the mechanism; stigma of mental illness and related populations of the various effects can be measured in two ways: public stigma and self-stigma; protest, education and exposure is to reduce the stigma effective way. Chinese culture in the future to carry out the stigma of mental illness, should be closely combined with the stigma of traditional culture analysis of the impact mechanism, and should explore the feasibility of stigma strategies. Mental illness stigma is an ashamed mark attached to people with mental illness, which is the status loss and discrimination triggered by negative stereotypes about people labeled as having mental illness. Some researches have showed that stigma may impede the treating and rehabilitating process of clients. The effect of mental illness stigma is currently a hot subject of research. Labeling theory and modified labeling theory are both the theories of the mechanism of the effect of stigma. Researchers investigate the effects of stigma and the ways of diminishing it from two aspects: public- stigma and self-stigma. The future research orientations in China should be combined with culture analysis. (shrink)

The text examines the article 11 of the Universal Declaration on Bioethics and Human Rights of UNESCO that deals with the principle of non-discrimination and non-stigmatization. Both concepts are related to the theme of human dignity, while discrimination is an inherent part of stigma: stigma does not exist if there is no discrimination. In this context, this paper aims to study the relationship between stigma, discrimination and HIV / AIDS. The study argues that (...) to loosen the bonds that hold the subjects that are attached to them is necessary questioning the broader forces - social, cultural, political and economic - that structure stigma, stigmatization and discrimination as social processes directly linked to production and reproduction of structural inequalities. (shrink)

The article is focused on social stigma in informal social control of drug abuse. Social stigma is considered as the three related components: negative stereotypes, prejudices, and discrimination. The discrimination as a behavioral result of stigma manifests itself in capability deprivation, compulsion and segregation. According to this scheme, informal social control is shown on the example of the four Russian grassroots initiatives, which can be observed at the present time. They are implementing various approaches. As (...) empirical data we used self-posted materials of these initiatives on the Internet. The textual data was analyzed by combination of content analysis and critical discourse analysis. We conclude that the spectrum of social stigma in sphere of informal control is quite wide: from its correction to its significant gain. And the gain of social stigma could not be marked as negative unambiguously. In case of some grassroots initiatives the effectiveness and potency of social control may be also based on strengthening the social stigma of people who use alcohol and drugs. The last conclusion is connected with some data from other countries. (shrink)

Stigma has become an important concept in public health law. It is widely accepted that certain diseases are disfavored in society, leading to discrimination against people identified with them, which in turn has the tendency to drive an epidemic underground—i.e., to make it more difficult for voluntary public health programs to reach and succeed among populations bent on concealing their disease or risk status. The need to reduce stigma and its effects has been used to justify the (...) passage of privacy and antidiscrimination law to protect people with HIV. More recently, stigma has been part of the arsenal of justification for special genetic antidiscrimination and privacy law. Despite its importance, however, there is no single widely accepted definition of stigma in social science, and its relationship to law has been generally under-theorized and unsupported by data, reducing our ability to effectively deploy law and other tools in the anti-stigma cause. (shrink)

Stigma has become an important concept in public health law. It is widely accepted that certain diseases are disfavored in society, leading to discrimination against people identified with them, which in turn has the tendency to drive an epidemic underground—i.e., to make it more difficult for voluntary public health programs to reach and succeed among populations bent on concealing their disease or risk status. The need to reduce stigma and its effects has been used to justify the (...) passage of privacy and antidiscrimination law to protect people with HIV. More recently, stigma has been part of the arsenal of justification for special genetic antidiscrimination and privacy law. Despite its importance, however, there is no single widely accepted definition of stigma in social science, and its relationship to law has been generally under-theorized and unsupported by data, reducing our ability to effectively deploy law and other tools in the anti-stigma cause. (shrink)

As Jonathan Mann observed, the problem of AIDS-related stigma is inextricably bound to issues of health, human rights, and the law. Such stigma translates into feelings of fear and hostility directed at people with HIV. It finds expression in avoidance and ostracism of people with HIV, discrimination and violence against them, and public support for punitive policies and laws that restrict civil liberties while hindering AIDS prevention efforts. Being the target of stigma inflicts pain, isolation, and (...) hardship on many people with HIV, while the desire to avoid it deters some from being tested for HIV, seeking treatment, or practicing risk-reduction. (shrink)

As Jonathan Mann observed, the problem of AIDS-related stigma is inextricably bound to issues of health, human rights, and the law. Such stigma translates into feelings of fear and hostility directed at people with HIV. It finds expression in avoidance and ostracism of people with HIV, discrimination and violence against them, and public support for punitive policies and laws that restrict civil liberties while hindering AIDS prevention efforts. Being the target of stigma inflicts pain, isolation, and (...) hardship on many people with HIV, while the desire to avoid it deters some from being tested for HIV, seeking treatment, or practicing risk-reduction. (shrink)

We examine stigma and how it operates, then develop a novel framework to classify the range of positions that are conceptually possible regarding how stigma ought to be handled from a public health perspective. In the case of weight stigma, the possible positions range from encouraging the intentional use of weight stigma as an obesity prevention and reduction strategy to arguing not only that this is harmful but that weight stigma, independent of obesity, needs to (...) be actively challenged and reduced. Using weight stigma as an illustrative example, we draw on prior theoretical work on stigma mechanisms and intervention strategies to develop a framework for improving the understanding, evaluation, and planning of anti-stigma interventions. This framework has the potential to help public health actors to map out how protest, contact, education, and regulation strategies can be used to reduce direct discrimination, structural discrimination, and internalized stigma. (shrink)

PurposeThis study aims to develop and validate a stigma scale for Chinese patients with breast cancer.MethodsPatients admitted to the Affiliated Cancer Hospital of Xiangya School of Medicine, Central South University, for breast cancer treatment participated in this study. Development of the Breast Cancer Stigma Scale involved the following procedures: literature review, interview, and applying a theoretical model to generate items; the Breast Cancer Stigma Scale’s content validity was assessed by a Delphi study and feedback from patients with (...) breast cancer ; exploratory factor analysis was used to assess the construct validity; convergent validity was assessed with the Social Impact Scale ; internal consistency Cronbach’s α, split-half reliability, and test–retest reliability were used to identify the reliability of the scale.ResultsThe final version of the Breast Cancer Stigma Scale consisted of 15 items and showed positive correlations with the Social Impact Scale. Exploratory factor analysis revealed four components of the Breast Cancer Stigma Scale: self-image impairment, social isolation, discrimination, and internalized stigma, which were strongly related to our perceived breast cancer stigma model and accounted for 69.443% of the total variance. Cronbach’s α for the total scale was 0.86, and each subscale was 0.75–0.882. The test–retest reliability with intra-class correlation coefficients of the total scale was 0.947, and split-half reliability with intra-class correlation coefficients of the total scale was 0.911. The content validity index was 0.73–1.0.ConclusionThe newly developed Breast Cancer Stigma Scale offers a valid and reliable instrument for assessing the perceived stigma of patients with breast cancer in clinical and research settings. It may be helpful for stigma prevention in China. (shrink)

In many parts of sub-Saharan Africa, mothers impacted by the genetic condition of albinism, whether as mothers of children with albinism or themselves with albinism, are disproportionately impacted by a constellation of health-related stigma, social determinants of health, and human rights violations. In a critical ethnographic study in Tanzania, we engaged with the voices of mothers impacted by albinism and key stakeholders to elucidate experiences of stigma. Their narratives revealed internalized subjective stigma, social stigma such as (...) being ostracized by family and community, and structural stigma on account of lack of access to SDH. An analysis of health systems as SDH revealed stigmatizing attitudes and behaviours of healthcare providers, especially at the time of birth; a lack of access to timely quality health services, in particular skin and eye care; and a lack of health-related education about the cause and care of albinism. Gender inequality as another SDH featured prominently as an amplifier of stigma. The findings pose implications for research, policy, and practice. A concrete avenue to de-stigmatization of mothers impacted by albinism exists by the application of principles of human rights, particularly equality and non-discrimination; contextual analysis of cultural dynamics including relevant ontology; meaningful participation of rights-claimants, such as peer groups of mothers; and accountability of governments and their obligation to ensure access to health information as a key social determinant of the right to health. (shrink)

Although unprecedented in scope and beyond all our life experiences, sweeping social distancing measures are not without historical precedent. Historically, racism, stigma, and discrimination resul...

RésuméLe monisme et le pluralisme ne sont pas seulement utilisés pour décrire la manière dont le droit international s'intègre dans un système juridique national ; ils peuvent également s'appliquer aux études qui cherchent à expliquer le « désordre » de la discrimination. Selon la théorie pluraliste de Sophia Moreau, le caractère répréhensible de la discrimination peut être résumé par trois types de traitement : la subordination, la restriction et l'exclusion. Dans cet article, j'explorerai le rôle que joue le (...) pouvoir dans sa théorie — alors que la question du pouvoir est explicitement discutée en relation avec la subordination, elle est moins apparente en ce qui concerne la restriction et l'exclusion. Cependant, je soutiens que le pouvoir est un élément crucial qui sous-tend toutes les formes de discrimination et tous les motifs de discrimination. (shrink)

IntroductionThose in mental health-related consumer movements have made clear their demands for humane treatment and basic civil rights, an end to stigma and discrimination, and a chance to participate in their own recovery. But theorizing about the politics of recognition, 'recognition rights' and epistemic justice, suggests that they also have a stake in the broad cultural meanings associated with conceptions of mental health and illness.ResultsFirst person accounts of psychiatric diagnosis and mental health care (shown here to represent 'counter (...) stories' to the powerful 'master narrative' of biomedical psychiatry), offer indications about how experiences of mental disorder might be reframed and redefined as part of efforts to acknowledge and honor recognition rights and epistemic justice. However, the task of cultural semantics is one for the entire culture, not merely consumers. These new meanings must be negotiated. When they are not the result of negotiation, group-wrought definitions risk imposing a revision no less constraining than the mis-recognizing one it aims to replace. Contested realities make this a challenging task when it comes to cultural meanings about mental disorder. Examples from mental illness memoirs about two contested realities related to psychosis are examined here: the meaninglessness of symptoms, and the role of insight into illness. They show the magnitude of the challenge involved - for consumers, practitioners, and the general public - in the reconstruction of these new meanings and realities.ConclusionTo honor recognition rights and epistemic justice acknowledgement must be made of the heterogeneity of the effects of, and of responses to, psychiatric diagnosis and care, and the extent of the challenge of the reconstructive cultural semantics involved. (shrink)

BackgroundCarefully planned research is critical to developing policies and interventions that counter physical, psychological and social challenges faced by young people living with HIV/aids, without increasing burdens. Such studies, however, must navigate a ‘vulnerability paradox’, since including potentially vulnerable groups also risks unintentionally worsening their situation. Through embedded social science research, linked to a cohort study involving Adolescents Living with HIV/aids (ALH) in Kenya, we develop an account of researchers’ responsibilities towards young people, incorporating concepts of vulnerability, resilience, and agency (...) as ‘interacting layers’.MethodsUsing a qualitative, iterative approach across three linked data collection phases including interviews, group discussions, observations and a participatory workshop, we explored stakeholders’ perspectives on vulnerability and resilience of young people living with HIV/aids, in relation to home and community, school, health care and health research participation. A total of 62 policy, provider, research, and community-based stakeholders were involved, including 27 ALH participating in a longitudinal cohort study. Data analysis drew on a Framework Analysis approach; ethical analysis adapts Luna’s layered account of vulnerability.ResultsALH experienced forms of vulnerability and resilience in their daily lives in which socioeconomic context, institutional policies, organisational systems and interpersonal relations were key, interrelated influences. Anticipated and experienced forms of stigma and discrimination in schools, health clinics and communities were linked to actions undermining ART adherence, worsening physical and mental health, and poor educational outcomes, indicating cascading forms of vulnerability, resulting in worsened vulnerabilities. Positive inputs within and across sectors could build resilience, improve outcomes, and support positive research experiences.ConclusionsThe most serious forms of vulnerability faced by ALH in the cohort study were related to structural, inter-sectoral influences, unrelated to study participation and underscored by constraints to their agency. Vulnerabilities, including cascading forms, were potentially responsive to policy-based and interpersonal actions. Stakeholder engagement supported cohort design and implementation, building privacy, stakeholder understanding, interpersonal relations and ancillary care policies. Structural forms of vulnerability underscore researchers’ responsibilities to work within multi-sectoral partnerships to plan and implement studies involving ALH, share findings in a timely way and contribute to policies addressing known causes of vulnerabilities. (shrink)

Stigmatization associated with the coronavirus disease 2019 is expected to be a complex issue and to extend into the later phases of the pandemic, which impairs social cohesion and relevant individuals' well-being. Identifying contributing factors and learning their roles in the stigmatization process may help tackle the problem. This study quantitatively assessed the severity of stigmatization against three different groups of people: people from major COVID-19 outbreak sites, those who had been quarantined, and healthcare workers; explored the factors associated with (...) stigmatization within the frameworks of self-categorization theory and core social motives; and proposed solutions to resolve stigma. The cross-sectional online survey was carried out between April 21 and May 7, 2020, using a convenience sample, which yielded 1,388 valid responses. Employing data analysis methods like multivariate linear regression and moderation analysis, this study yields some main findings: those from major COVID-19 outbreak sites received the highest level of stigma; factors most closely associated with stigmatization, in descending order, are objectification and epidemic proximity in an autonomic aspect and fear of contracting COVID-19 in a controllable aspect; and superordinate categorization is a buffering moderator in objectification–stigmatization relationship. These findings are important for further understanding COVID-19-related stigma, and they can be utilized to develop strategies to fight against relevant discrimination and bias. Specifically, reinforcing superordinate categorization by cultivating common in-group identity, such as volunteering and donating for containment of the pandemic, could reduce objectification and, thus, alleviate stigma. (shrink)

The psychiatric diagnosis of psychopathic personality—or psychopathy—signifies a patient stereotype with a callous lack of empathy and strong antisocial tendencies. Throughout the research record and psychiatric practices, diagnosed psychopaths have been predominantly seen as immune to psychiatric intervention and treatment, making the diagnosis a potentially strong discriminator for treatment amenability. In this contribution, the evidence in support of this proposition is critically analyzed. It is demonstrated that the untreatability perspective rests largely on erroneous, unscientific conclusions. Instead, recent research suggests that (...) practitioners should be more optimistic about the possibility of treating and rehabilitating diagnosed psychopaths. In light of this finding, concrete ethical challenges in the forensic practice surrounding the psychopathy diagnosis are discussed, adding to a growing body of research that expresses skepticism about the forensic utility of the diagnosis. (shrink)

Challenges to psychiatric stigma fall between a rock and a hard place. Decreasing one prejudice may inadvertently increase another. Emphasising similarities between mental illness and ‘ordinary’ experience to escape the fear-related prejudices associated with the imagined ‘otherness’ of persons with mental illness risks conclusions that mental illness indicates moral weakness and the loss of any benefits of a medical model. An emphasis on illness and difference from normal experience risks a response of fear of the alien. Thus, a ‘likeness-based’ (...) and ‘unlikeness-based’ conception of psychiatric stigma can lead to prejudices stemming from paradoxically opposing assumptions about mental illness. This may create a troubling impasse for anti-stigma campaigns. (shrink)

Since the introduction of drugs to prevent vertical transmission of HIV, the purpose of and approach to HIV testing of pregnant women has increasingly become an area of major controversy. In recent years, many strategies to increase the uptake of HIV testing have focused on offering HIV tests to women in pregnancy-related services. New global guidance issued by the World Health Organization (WHO) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) specifically notes these services as an entry point for (...) provider-initiated HIV testing and counseling (PITC). The guidance constitutes a useful first step towards a framework within which PITC sensitive to health, human rights and ethical concerns can be provided to pregnant women in health facilities. However, a number of issues will require further attention as implementation moves forward. It is incumbent on all those involved in the scale up of PITC to ensure that it promotes long-term connection with relevant health services and does not result simply in increased testing with no concrete benefits being accrued by the women being tested. Within health services, this will require significant attention to informed consent, pre- and post-test counseling, patient confidentiality, referrals and access to appropriate services, as well as reduction of stigma and discrimination. Beyond health services, efforts will be needed to address larger societal, legal, policy and contextual issues. The health and human rights of pregnant women must be a primary consideration in how HIV testing is implemented; they can benefit greatly from PITC but only if it is carried out appropriately. (shrink)

People with mental illness are treated, in research, as a ‘class’ or category who are vulnerable, without always being clear why they should be treated as such, not why an individual, rather than the class, is vulnerable. The two main reasons given are lack of competence and power imbalance. Competence issues include incapacity and legislation, assessment and the impact of the illness in decisions. Power issues cover the role of mental health legislation, coercion, protectiveness and paternalism, stigma and (...) class='Hi'>discrimination and the ‘well’ and ‘ill’ self. These are examined within a framework of risk assessment, both to the patient and to others. Over-concern to protect the vulnerable can lead to gate-keepers preventing their inclusion in studies at various stages of the research. This denies such groups a voice in the research process.It is suggested that ethical scrutiny of research is not only to prevent harm to the vulnerable, but also to provide a framework to empower such people to take part in research. To do otherwise is to further stigmatize and marginalize them. One way forward is to look at the risk presented by different types of research, from clinical intervention trials to non-therapeutic, qualitative studies and to modify capacity and access requirements in the light of the risks presented. (shrink)

This study was conducted from May to June 2005 to describe the demographic characteristics and factors that affect the VCT acceptance as well as the HIV prevalence among youth VCT acceptors in Addis Ababa. Both quantitative and qualitative methods of data collection were employed. The quantitative data was generated from a two years (October 2002 to December 2004) VCT service utilization data obtained from four youth centers located in Addis Ababa. The data was analysed using univariate and multivariate analysis and (...) results were presented in the form of text, table and figures. The significance and level of associations between independent and dependant variables was computed using X2 tests and odds ratios with 95% confidence interval. The qualitative data was presented in a form of narrations using excerpts. During the period a total of 3220, youth age 15 - 24 years have sought VCT service from the four youth centres VCT service outlets. Higher proportions of females (60.2%) and youth in the age category of 20 – 24 years (58.0%) have accessed the service. The major reasons given for seeking VCT were found to be similar for male and female acceptors. About 71.2% said that they sought for VCT service because they wanted to know their HIV status, 9.5% reported because they were suspicious of being infected with HIV and 5.0% tested because they wanted to go aboard. The HIV prevalence rate is found to be significantly higher, (p = 0.00), among females 9.2 % than in males 1.7 %. Gender segregated multivariate analysis of risk factors indicated significant association of HIV infection with lack of formal education for both males and female: for males P= 0.045, OR = 18.3, 95% CI: 1.1 – 317.7 and for females P=0.00, OR=19.4, 95 % CI: 5.1 – 73.8. Additionally for females HIV infection is markedly associated with being widowed and commercial sex worker. The most common barrier for youth in Addis from accessing VCT were found to be: fear of being emotionally affected if found out HIV positive, stigma and discrimination, lack of money to pay for VCT service, absence of care and support services for people who are already infected. The challenges encountered by youth VCT counsellors were stress, absence of medical care for PLWHA, inadequacy of budget, lack of counsellors and supportive supervision. This study showed high burden of HIV infection among female youth and the risk factors associated with it. Formal education for both females and males is strongly recommended. Female focused HIV prevention interventions are indicated. Additional recommendations are also made in relation to barriers to access youth VCT and for the challenges encountered by youth VCT service providers. (shrink)

Although employed throughout health-related rhetoric and research today, prevention it is an ambiguous and complicated category when applied to mental and behavioral health. It is analyzed here, along with four ethical issues arising when public health preventative methods and goals involve mental health: age of intervention; resource priorities between prevention and treatment; substantive issues in preventive pedagogies and trade-offs framed by differences of approach. Illustrations include some of the most widespread and ambitious recent preventive models: those aiming to avert subsequent (...) mood disorders of depression and anxiety; those that would curb self-harming behavior, and efforts to anticipate and avoid or delay psychosis. To suppose that public mental health can be entirely modeled on other public health programs is mistaken. Instead, it must proceed with awareness of the particular features typifying many mental disorders. These include features of the disorders themselves; the preliminary nature of scientific knowledge about them; the contested applicability of traditional disease models to them; the dearth of established research data available about preventive interventions currently in place or proposed; and the effects of stigma and discrimination on any such interventions. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Finding PartnershipThe Benefit of Sharing and the Capacity for ComplexityMichaela Amering (bio)Keywordsrecovery, empowerment, trialog, user involvement, schizophreniaIs There Ignorance and Arrogance? In Psychiatry? In Medicine?Adding insight to injury' is the paraphrase psychiatrist Pat McGorry (1992) coined for his reproach of 'pushing for "insight" or "acceptance of diagnosis"' without carefully taking into account the complexities of the individual situation, context, and needs. That must be about the kind of behavior (...) Marga Reimer has in mind in her paper on treatment adherence in the absence of insight, which depicts mental health professionals characterized by arrogance against the common sense of motivating compliance by perceived or anticipated benefits on different everyday life levels, but instead trying to get people to believe in a mental illness such as schizophrenia and wishing them to want treatment for that in the form of medication.In addition, Reimer presents examples from general medicine to make her point that adherence follows perceived or anticipated benefits instead of being a result of insight into a medical model of illness and McGorry (1992) also suggests that disregard for the active role that patients may play as reflected in psychiatry in terms such as 'case management' and 'compliance' "is a failing which extends to mainstream medicine and probably to most systems of human service delivery." On the other hand, Bill Anthony (2006), one of the most eminent experts on psychiatric rehabilitation and recovery in a personal report on his own medical illness, multiple sclerosis—MS, and the assistance he has been receiving in connection with it, describes the 'MS-Community' as exemplary with respect to instilling courage and hope, continually providing information and opportunities for exchange, and for never questioning a person's ultimate freedom of choice. In contrary, in mental health care he does not experience the medical profession as acting with full respect and support for its patients and suggests a great deal more work and transformation—especially concerning coercive treatments—ahead to follow this example. Similarly, it has been suggested that psychiatry should be better integrated into medicine to overcome stigma and discrimination of psychiatric health problems and interventions. A pertinent example of an initiative in this direction is the proposal of a fusion of mental health and incapacity legislation to arrive at ethically consistent legal situations with regard to involuntary [End Page 77] treatment across medicine (Dawson and Szmukler 2006).Is There Something Called Schizophrenia? and How Much Longer?Reimer's main example—schizophrenia—is the diagnosis that poses some of the greatest problems to the field and to the recognition of psychiatry as a scientific medical discipline. The current concept as well as the term 'schizophrenia' will probably not be around much longer; 'a century of schizophrenia is enough' (Kelly and Murray 2002). Suggested solutions for the problems of the diagnosis of schizophrenia concern the urgent complement of the categorical with a dimensional approach (Allardyce et al. 2007), a change also put forward as one of the essential remedies to undermine the stigma of mental illness that is often exacerbated by clinical diagnosis (Corrigan 2007). Such a move would also clearly help against the still prevalent experiences of users of services and their families and friends, whose hopes and dreams have been crushed and whose resilience has been undermined by clinical situations, which in times of psychotic crises, not only forced diagnoses but also prognoses—often scientifically unfounded—on them (Amering and Schmolke 2009).Is There a Solution? Can We Use Our Talents? And Those of People With a Lived Experience of Mental Health Problems and Care?Clinicians as well as scientists know that health, illness, and recovery occur in complex ways and contexts. People faced with mental health problems clearly realize the complexities of their situation and are especially motivated to appreciate the variety of factors and interactions that need to be integrated to arrive at a valid assessment. Ideally, the therapeutic relationship—essentially a partnership—holds a formidable chance of sharing efforts and creating the wisdom for finding and facing the truths necessary to develop solutions that can uphold and work in line with the complexities of human life.I would argue that psychiatric professionals are certainly part... (shrink)

Inequities shape the everyday experiences and life chances of individuals at the margins of societies and are often associated with lower health and particular challenges in accessing quality treatment and support. This fact is even more dramatic for those individuals who live at the nexus of different marginalized groups and thus may face multiple discrimination, stigma, and oppression. To address these multiple social and structural disadvantages, intersectional approaches have recently gained a foothold, especially in the public health field. (...) This study makes an empirically informed argument for the merits of increasing the use of intersectional frameworks in the mental health field. In the mental health field, the potential for greater attention to multiple unjustified disadvantages appears to be of particular importance, as many mental health service users already face stigma and discrimination because of their mental health issues and thus may benefit particularly frequently and far-reachingly from effective problem awareness about multiple disadvantages. Intersectional approaches may help address the complexity, interdependence, and mutual constitution of social inequalities better than previous approaches that examined only one category of sociostructural stratification. By helping to identify the needs of those at the greatest risk of poor health, intersectional frameworks and tools can contribute not only to better address the needs of multiple disadvantaged individuals with mental health issues but also to the promotion of equity in the field of mental health, contributing to the reduction of health disparities. (shrink)

Lung cancer is the leading cause of cancer death in women, accompanied by greater psychological distress than other cancers. There is minimal but increasing awareness of the impact of lung cancer stigma (LCS) on patient outcomes. LCS is associated with increased symptom burden and decreased quality of life. The purpose of this study was to explore the experience of female long‐term lung cancer survivors in the context of LCS and examine how participants discursively adhere to or reject stigmatizing beliefs. (...) Findings situated within Cataldo and colleagues' theoretical model include: (1) addiction and tobacco marketing as possible precursors for LCS, (2) the possible role of expert providers as LCS enhancers, (3) response of overlapping complicated identity shifts, (4) simultaneous rejection and assumption of LCS, and (5) information control via advocacy activities as a LCS mitigation response. These findings expand the current understanding of LCS, and call for future conceptual exploration and theoretical revision, particularly with respect to the possibility of interaction between relevant/related stigma(s) and LCS. As the number of women living with lung cancer increases, with longer survival times, the effect of LCS and other experiences of discrimination on patient outcomes could be substantial. (shrink)

BackgroundAdolescents living with human immunodeficiency virus (HIV) experience challenges, including lack of involvement in their care as well nondisclosure of HIV status, which leads to poor adherence to antiretroviral therapy (ART). Parents have authority over their children, but during adolescence there is an increasing desire for independence. The aim of the study was to explore adolescents’ experience of challenges identified by adolescents ages 10–19 years attending HIV care and treatment at Temeke Regional Referral Hospital in Tanzania. MethodsAn exploratory descriptive qualitative (...) design was employed in the HIV Care and Treatment Centre (CTC) in the Out-Patient Department at the Temeke Regional Referral Hospital in Tanzania with adolescents living with HIV who were 10–19 years of age. A total of 22 adolescents participated in semi-structured face-to-face interviews after parental consent and adolescent assent were obtained. Participants were interviewed about their participation in decisions to be tested for HIV and enrolled in the CTC, concerns surrounding disclosure of their HIV status to the adolescent or to others, stigma and discrimination, and the effect of these challenges on their adherence to medication. All interviews were audio-taped, transcribed verbatim in Swahili, and back-translated to English. Data analysis included both inductive and deductive thematic analysis.ResultsQualitative themes identified included lack of participation in decisions about HIV testing, challenges to enrollment in care and treatment; issues around disclosure of HIV status, such as delays in disclosure to the adolescent and disclosure to other persons and benefits and harms of such disclosures; and factors supporting and interfering with adherence to ART, such as parental support, organizational (clinic) support and problems, and self-stigmatization and shame.ConclusionLack of adolescents’ involvement in their care decision making and delayed disclosure of HIV status to the adolescent were identified concerns, leading to poor adherence to ART among adolescents. Disclosure to others, especially teachers, helped adolescents at school to take their medication properly. Disclosure to others led to stigma and discrimination for some adolescents. More research is needed to better understand the role of disclosure and its benefits and challenges for HIV-positive adolescents in Tanzania. (shrink)

This paper is the second of two in a series. In our first paper, we presented a social justice framework emerging from an extensive literature review and incorporating core social determinants specific to mental health in the age of COVID-19 and illustrated specific social determinants impacting mental health (SDIMH) of our resettled Bhutanese refugee population during the pandemic. This second paper details specific barriers to the SDIMH detrimental to the basic human rights and social justice of this population during this (...) pandemic. The SDIMH, as described, further informs the need for social justice measures and cultural humility in mental healthcare, public health, law, and community engagement. This work concludes with a proposed call to action toward mental health improvement and fair treatment for refugee populations in three core areas: communication and education, social stigma and discrimination, and accessibility and availability of resources. (shrink)

This thesis is concerned with philosophical perspectives on the stigma of mental illness, with each chapter exploring different philosophical issues. Chapter one delineates the central concept around which the rest of the work revolves: the stigma of mental illness. It provides an outline of the stigma mechanism, how it applies to mental illness, why it is such a large public health concern and what has been done so far to combat it. Chapter two is concerned with the (...) application of recent literature in the philosophy of implicit bias to the topic of mental illness. It suggests that we have hitherto been preoccupied with explicit formulations of the stigma mechanism, but argues that there are distinctive issues involved in combatting forms of discrimination in which the participants are not cognisant of their attitudes or actions, and that anti-stigma initiatives for mental illness should take note. Chapter three applies the philosophical literature concerning the ethics of our epistemic practices to the stigma of mental illness. It contains an analysis of how epistemic injustice- primarily in the forms of testimonial injustice and stereotype threat- affects those with mental illnesses. The fourth chapter brings in issues in the philosophy of science to explore the possibility of intervening on the stigma process to halt the stigma of mental illness. The first candidate is discounted, and the second is tentatively endorsed. The fifth chapter is concerned with how language facilitates the stigma of mental illness. It suggests that using generics to talk about mental illness is deeply problematic. In the former, it conveys insidious forms of social stereotyping. In the latter, it propagates misinformation by presenting the category as a quintessential one. (shrink)

While stigmatisation is universal, stigma research in low- and middle-income countries (LMIC) is limited. LMIC stigma research predominantly concerns health-related stigma, primarily regarding HIV/AIDS or mental illness from an adult perspective. While there are commonalities in stigmatisation, there are also contextual differences. The aim of this study in DR Congo (DRC), as a formative part in the development of a common stigma reduction intervention, was to gain insight into the commonalities and differences of stigma drivers (...) (triggers of stigmatisation), facilitators (factors positively or negatively influencing stigmatisation), and manifestations (practices and experiences of stigmatisation) with regard to three populations: unmarried mothers, children formerly associated with armed forces and groups (CAAFAG), and an indigenous population. Group exercises, in which participants reacted to statements and substantiated their reactions, were held with the ‘general population’ (15 exercises, n = 70) and ‘populations experiencing stigma’ (10 exercises, n = 48). Data was transcribed and translated, and coded in Nvivo12. We conducted framework analysis. There were two drivers mentioned across the three populations: perceived danger was the most prominent driver, followed by perceived low value of the population experiencing stigma. There were five shared facilitators, with livelihood and personal benefit the most comparable across the populations. Connection to family or leaders received mixed reactions. If unmarried mothers and CAAFAG were perceived to have taken advice from the general population and changed their stereotyped behaviour this also featured as a facilitator. Stigma manifested itself for the three populations at family, community, leaders and services level, with participation restrictions, differential treatment, anticipated stigma and feelings of scapegoating. Stereotyping was common, with different stereotypes regarding the three populations. Although stigmatisation was persistent, positive interactions between the general population and populations experiencing stigma were shared as well. This study demonstrated utility of a health-related stigma and discrimination framework and a participatory exercise for understanding non-health related stigmatisation. Results are consistent with other studies regarding these populations in other contexts. This study identified commonalities between drivers, facilitators and manifestations—albeit with population-specific factors. Contextual information seems helpful in proposing strategy components for stigma reduction. (shrink)

Recruiting patients to participate in health research is challenging, and most studies struggle. Failure to recruit can jeopardise the quality of research, and threatens efforts to improve healthcare. Despite this, recruitment materials tend to be conservatively designed and unimaginative. One reason for this is ethical concerns regarding the risk of coercion and offence posed by recruitment materials. The OXTEXT research programme gave patients a leading role in the design of new recruitment materials, in an area where stigma and (...) class='Hi'>discrimination make ethical risks particularly acute. We discovered that our patient-designed recruitment materials were much bolder than usual, and they put the existing ethical boundaries to the test. The materials were effective and well liked – patients regarded them as neither unacceptable nor coercive. This suggests we may need to rethink the ethics of recruitment to research such that we permit more creative recruitment materials. In addition, it suggests a new role for patient input into research as designers of recruitment materials. (shrink)

This essay argues that the discrimination that fat patients face is an issue of health justice. Insofar as this is the case, bioethicists and health care providers should not only care about it but also work to dismantle the systematic, institutional, social, and individual factors that are contributing to it to ensure that fat patients receive high‐quality health care, free of stigma and discrimination. The essay discusses a variety of ways in which fat patients are discriminated against (...) and considers the false assumptions that fuel such discrimination. It concludes by considering the structural and social issues that contribute to fatness and pushes health care providers to abandon the assumption that being fat is an individual moral failing. Ultimately, the paper argues, “fat” is not necessarily a bad word, nor one that health care providers should avoid. (shrink)

ABSTRACT This article considers how five single mothers, who used adoption or donor conception to bring children into their lives, negotiate a persistent and pervasive discourse of ‘problematic single motherhood’ in their interview talk. Tactics of intersubjectivity (Bucholtz & Hall [2005]. Identity and interaction: A sociocultural linguistic approach. Discourse Studies, 7(4–5), 585–614.), especially the overlapping strategies of distinction, authorisation and illegitimation, are shown to be particularly salient for these parents, as they work to legitimise their routes to motherhood by distancing (...) themselves from widely stigmatised positions such as young motherhood, working-class motherhood and unplanned motherhood. I argue that these single women’s intersubjective positioning serves to protect them against stigma and discrimination, but often relies on the reproduction of other polarising and discriminatory discourses, which feed into idealised constructions of mothers as responsible, middle-class, and appropriately aged citizens. Overall, the analysis suggests that it is difficult for these single mothers to challenge the multiple and intersecting discriminatory discourses, ideals and stereotypes that converge in exclusionary and limiting constructions of single motherhood, whilst maintaining a recognisably legitimate social position for themselves. (shrink)

An individual's health, genetic, or environmental-exposure data, placed in an online repository, creates a valuable shared resource that can accelerate biomedical research and even open opportunities for crowd-sourcing discoveries by members of the public. But these data become “immortalized” in ways that may create lasting risk as well as benefit. Once shared on the Internet, the data are difficult or impossible to redact, and identities may be revealed by a process called data linkage, in which online data sets are matched (...) to each other. Reidentification, the process of associating an individual's name with data that were considered deidentified, poses risks such as insurance or employment discrimination, social stigma, and breach of the promises often made in informed-consent documents. At the same time, re-ID poses risks to researchers and indeed to the future of science, should re-ID end up undermining the trust and participation of potential research participants. The ethical challenges of online data sharing are heightened as so-called big data becomes an increasingly important research tool and driver of new research structures. Big data is shifting research to include large numbers of researchers and institutions as well as large numbers of participants providing diverse types of data, so the participants’ consent relationship is no longer with a person or even a research institution. In addition, consent is further transformed because big data analysis often begins with descriptive inquiry and generation of a hypothesis, and the research questions cannot be clearly defined at the outset and may be unforeseeable over the long term. In this article, we consider how expanded data sharing poses new challenges, illustrated by genomics and the transition to new models of consent. We draw on the experiences of participants in an open data platform—the Personal Genome Project—to allow study participants to contribute their voices to inform ethical consent practices and protocol reviews for big-data research. (shrink)

The following is dedicated to promoting a version of the disability critique of negative genetic selection while navigating claims that launching such a critique threatens reproductive liberty or is unavoidably antichoice. I highlight problematic conceptual assumptions regarding genetics and choice made by proponents and opponents of selection alike and bring out the underlying ableist values of the prevailing conversation. Ableism is discrimination against persons on the basis of perceived disability. I conclude that the existing social and institutional milieu surrounding (...) genetic selection threatens persons who experience difference with stigma and its accompanying political and social disadvantages. My .. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Vulnerabilization and De-pathologizationTwo Philosophical SuggestionsHavi Carel, PhD (bio)Alastair Morgan raises useful and interesting philosophical critiques of the 'power-threat-meaning' framework proposed by Johnstone et al. (2018). In what follows I make two suggestions that may clarify some aspects of the debate. First, to broaden the notion of threat: we can think more broadly about adverse life events as the source of mental suffering by broadening the notion of threat to (...) what I term (in joint work with Ian James Kidd) Vulnerabilization. Second, I offer a distinction between de-pathologizing psychiatric disorders (i.e., removing stigma and negative stereotypes) and de-medicalizing such disorders (i.e., rescinding them from a diagnostic manual), in order to suggest that de-medicalizing on its own does not solve the problem of stigma, but de-pathologizing is a better candidate for achieving that.Threat and VulnerabilizationMorgan argues that the notion of threat is too limited to cover the breadth of psychiatric conditions and presentations. Threat and power may often be present, but how they lead to the appearance of behaviors that meet certain diagnostic criteria, is, as Morgan states, unclear at best and only a partial explanation for psychiatric disorders (it explains some behaviors, not all). I suggest we view threat as one type of a broader category, which I propose to term 'Vulnerabilization' (Carel & Kidd, 2021).Vulnerabilization refers to the effects of interactions and actions that impact on people by harming them and making them more vulnerable to future adversity. For example, removing a struggling child from a classroom causes them to miss the lesson, and if done repeatedly, harms their capacity to continue studying. Leaving a weak patient unsupervised in the wrong kind of bed may cause them to fall and become more vulnerable to disease and infection. Failing to organize accommodation for an inmate about to be released from prison forces them onto the streets and makes them more vulnerable to reoffending. The point of the term is to draw attention to the fact that one is not born vulnerable, to paraphrase de Beauvoir, [End Page 73] but becomes vulnerabilized through acts and omissions of others. Such acts and omissions often take place under the auspices of an institution—health care, social care, education, criminal justice, and so on—and are therefore intimately tied to ethoi and conduct of institutions (for a full analysis see Carel & Kidd, 2021).Vulnerabilization is a common theme in the testimonies of people who have negative experiences of social institutions, including, of course, health care institutions. Ideally, health care systems, schools, courts, and other major institutions scaffold and protect our agency, efficiently support our endeavors, and fairly and reliably disperse social and epistemic resources. But while some people have reliably satisfying experiences of social institutions, others find that many, if not all, of the institutions they encounter abandon, ignore, silence, harm, or even kill them and people like them (this is not an exaggeration: inquiries such as the Francis Report (2013) on the Mid Staffordshire patient neglect case and the Sheldon Review (n.d.) provide plentiful examples of that).1 When vulnerable people encounter institutions, they are often at an epistemic and communicative disadvantage that makes their interactions with institutions a source of suffering and injustice and indeed makes such people even more vulnerabilized. They may be affected by poverty, disability (especially mental ill health and learning disabilities), trauma, domestic violence, ill health, racism, sexism, ageism, or other sources of disadvantage, prejudice and discrimination; and, of course, they can be disadvantaged by a combination of such factors. Seeing power as the source of much suffering, social injustice and poor mental health is, of course, entirely in line with this view and I agree with Morgan that Johnstone et al. (2018) identified an important source of suffering.De-Medicalizing Versus De-PathologizingAnother important issue about psychiatric diagnoses is the stigma and negative stereotypes surrounding mental illness. Calls to de-medicalize a specific or all mental disorders is, in part, a call to remove stigma and negative stereotype from the behaviors and mental states that characterize a mental disorder. However, to de-medicalize... (shrink)

In recent decades, researchers have attempted to prospectively identify individuals at high risk of developing psychosis in the hope of delaying or preventing psychosis onset. These psychosis risk individuals are identified as being in an ‘At-Risk Mental State’ (ARMS) through a standardised psychometric interview. However, disclosure of ARMS status has attracted criticism due to concerns about the risk–benefit ratio of disclosure to patients. Only approximately one quarter of ARMS patients develop psychosis after three years, raising concerns about the unnecessary harm (...) associated with such ‘false-positive’ results. These harms are especially pertinent when identifying psychosis risk individuals due to potential stigma and discrimination in a young clinical population. A dearth of high-quality evidence supporting interventions for ARMS patients raises further doubts about the benefit accompanying an ARMS disclosure. Despite ongoing discussion in the bioethical literature, these concerns over the ethical justification of disclosure to ARMS patients are not directly addressed in clinical guidelines. In this paper, we aim to provide a unified disclosure strategy grounded in principle-based analysis for ARMS clinicians. After considering the ethical values at stake in ARMS disclosure, and their normative significance, we argue that full disclosure of the ARMS label is favoured in the vast majority of clinical situations due to the strong normative significance of enhancing patients' understanding. We then compare our framework with other approaches to ARMS disclosure and outline its limitations. (shrink)

BackgroundHuman biological materials are usually stored for possible future use in research because they preserve valuable biological information, save time and resources, which would have been spent on collection of fresh samples. However, use of these materials may pose ethical challenges such as unauthorized disclosure of genetic information, which can result in dire consequences for individuals or communities including discrimination, stigma, and psychological harm; has biosecurity implications; and loss of control or ownership of samples or data. To understand (...) these problems better, we evaluated the extent to which tuberculosis (TB) clinical research protocols that were used to collect and store biological materials for future use conform to the requirements stated in the Uganda national guidelines for research involving humans as participants.MethodsThis was a retrospective review of TB clinical research projects approved by the Uganda National Council for Science and Technology (UNCST) from 2011 to 2015, to examine whether they fulfilled the requirements for ethical collection and use of human materials. Data were abstracted through review of the project protocols using a template developed based on the informed consent and the Materials Transfer Agreement (MTA) requirements in the national guidelines.ResultsOut of 55 research protocols reviewed, most of the protocols 83.6% had been used to collect the stored samples (sputum, blood and sometimes urine), 28% had a section on specimen collection and 24% mentioned ownership of the biological materials. With respect to review of the consent forms used in the studies that stored materials for future use, only 9% of the protocols had a separate consent form for storage of materials, 4.5% of the consent forms explained the risks, 11.4% explained the purpose of the study while 6.8% mentioned the place of storage for the collected materials.ConclusionMany of the studies reviewed did not meet the requirements for collection and storage of biological materials contained in the national guidelines, which indicates a need to additional training on this topic. (shrink)

BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related risks, (...) as well as intrinsic goals such as promoting the respect of participants and their community. However, successful community engagement depends on the degree to which CABs legitimately represent and engage with communities targeted for research. Currently, there is little literature describing the use of CABs in genomics research taking place in developing countries, and even less in the field of genomics research relating to mental illness. The aim of this article is to describe and consider the contributions made by a researcher-driven, population-specific CAB in a genomics of schizophrenia research project taking place in South Africa, from the perspective of the research team.DiscussionFour broad discussion topics emerged during the CAB meetings namely: 1) informed consent procedures, 2) recruitment strategies, 3) patient illness beliefs and stigma experiences, and 4) specific ethical concerns relating to the project. The authors consider these discussions in terms of their contributions to instrumental and intrinsic goals of community engagement.SummaryThe CAB gave valuable input on the consent processes and materials, recruitment strategies and suggested ways of minimizing the potential for stigma and discrimination. All of these contributions were of an instrumental nature, and helped improve the way in which the research took place. In addition, and perhaps more importantly, the CAB made a unique and important contribution relating to intrinsic functions such as promoting the respect and dignity of research participants and their community. This was particularly evident in ensuring sensitivity and respect of the community’s traditional beliefs about schizophrenia and its treatment, and in this way promoting a respectful relationship between the research team and the participants. (shrink)