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Background & methods National protests in the summer of 2020 drew attention to the significant presence of police in marginalized communities. Recent social movements have called for substantial police reforms, including “defunding the police,” a phrase originating from a larger, historical abolition movement advocating that public investments be redirected away from the criminal justice system and into social services and health care. Although research has demonstrated the expansive role of police to respond a broad range of social problems and health emergencies, existing research has yet to fully explore the capacity for health insurance policy to influence rates of arrest in the population. To fill this gap, we examine the potential effect of Medicaid expansion under the Affordable Care Act (ACA) on arrests in 3,035 U.S. counties. We compare county-level arrests using FBI Uniform Crime Reporting (UCR) Program Data before and after Medicaid expansion in 2014–2016, relative to counties in non-expansion states. We use difference-in-differences (DID) models to estimate the change in arrests following Medicaid expansion for overall arrests, and violent, drug, and low-level arrests. Results Police arrests significantly declined following the expansion of Medicaid under the ACA. Medicaid expansion produced a 20–32% negative difference in overall arrests rates in the first three years. We observe the largest negative differences for drug arrests: we find a 25–41% negative difference in drug arrests in the three years following Medicaid expansion, compared to non-expansion counties. We observe a 19–29% negative difference in arrests for violence in the three years after Medicaid expansion, and a decrease in low-level arrests between 24–28% in expansion counties compared to non-expansion counties. Our main results for drug arrests are robust to multiple sensitivity analyses, including a state-level model. Conclusions Evidence in this paper suggests that expanded Medicaid insurance reduced police arrests, particularly drug-related arrests. Combined with research showing the harmful health consequences of chronic policing in disadvantaged communities, greater insurance coverage creates new avenues for individuals to seek care, receive treatment, and avoid criminalization. As police reform is high on the agenda at the local, state, and federal level, our paper supports the perspective that broad health policy reforms can meaningfully reduce contact with the criminal justice system under historic conditions of mass criminalization.

Background This is the ninth paper in our series, “Community Health Workers at the Dawn of a New Era”. Community health workers (CHWs) are in an intermediary position between the health system and the community. While this position provides CHWs with a good platform to improve community health, a major challenge in large-scale CHW programmes is the need for CHWs to establish and maintain beneficial relationships with both sets of actors, who may have different expectations and needs. This paper focuses on the quality of CHW relationships with actors at the local level of the national health system and with communities. Methods The authors conducted a selective review of journal articles and the grey literature, including case study findings in the 2020 book Health for the People: National CHW Programs from Afghanistan to Zimbabwe. They also drew upon their experience working with CHW programmes. Results The space where CHWs form relationships with the health system and the community has various inherent strengths and tensions that can enable or constrain the quality of these relationships. Important elements are role clarity for all actors, working referral systems, and functioning supply chains. CHWs need good interpersonal communication skills, good community engagement skills, and the opportunity to participate in community-based organizations. Communities need to have a realistic understanding of the CHW programme, to be involved in a transparent process for selecting CHWs, and to have the opportunity to participate in the CHW programme. Support and interaction between CHWs and other health workers are essential, as is positive engagement with community members, groups, and leaders. Conclusion To be successful, large-scale CHW programmes need well-designed, effective support from the health system, productive interactions between CHWs and health system staff, and support and engagement of the community. This requires health sector leadership from national to local levels, support from local government, and partnerships with community organizations. Large-scale CHW programmes should be designed to enable local flexibility in adjusting to the local community context.

This paper aims to review the empirical and theoretical research on engineering ethics education, by focusing on the challenges reported in the literature. The analysis is conducted at four levels of the engineering education system. First, the individual level is dedicated to findings about teaching practices reported by instructors. Second, the institutional level brings together findings about the implementation and presence of ethics within engineering programmes. Third, the level of policy situates findings about engineering ethics education in the context of accreditation. Finally, there is the level of the culture of engineering education. The multi-level analysis allows us to address some of the limitations of higher education research which tends to focus on individual actors such as instructors or remains focused on the levels of policy and practice without examining the deeper levels of paradigm and purpose guiding them. Our approach links some of the challenges of engineering ethics education with wider debates about its guiding paradigms. The main contribution of the paper is to situate the analysis of the theoretical and empirical findings reported in the literature on engineering ethics education in the context of broader discussions about the purpose of engineering education and the aims of reform programmes. We conclude by putting forward a series of recommendations for a socio-technical oriented reform of engineering education for ethics.

This paper reports findings from a qualitative study into the immediate impact of social distancing measures on the lives of lesbian, gay, bisexual and trans (LGBT+) older people (≥60 years) living in the UK during the first lockdown of the COVID-19 pandemic. It draws on in-depth interviews with 17 older people and 6 key informants from LGBT+ community-based organisations, exploring the strategies used to manage their situations, how they responded and adapted to key challenges. Five themes emerged related to: 1) risk factors for LGBT+ older people and organisations, including specific findings on trans experiences,;2) care practices in LGBT+ lives,;3) strengths and benefits of networking 4) politicisation of ageing issues and their relevance to LGBT+ communities; and 5) learning from communication and provision in a virtual world. The findings illuminate adaptability and many strengths in relation to affective equality and reciprocal love, care and support among LGBT+ older people. It is vital UK that the government recognises and addresses the needs and concerns of LGBT+ older people during emergencies. What is known: The coronavirus (COVID-19) pandemic, and the wider governmental and societal response, brought health inequalities into sharp focus, exposing the structural disadvantage and discrimination faced by many marginalised communities in the UK and globally. LGBT+ older people are known to experience health inequalities compounded by anticipated or poor experiences of accessing health and social care services. What this paper adds: An exploration of LGBT+ older peple, their communities and social networks and how these were adapted in the COVID-19 context. Trans older people have been affected in very specific ways. The findings illuminate adaptability and many strengths in relation to affective equality and reciprocal love, care and support among LGBT+ older people. It is vital UK that the government recognises and addresses the needs and concerns of LGBT+ older people during emergencies.

Sociogenomics examines the extent to which genetic differences between individuals relate to differences in social and economic behaviors and outcomes. The field evokes mixed reactions. For some, sociogenomics runs the risk of normalizing eugenic attitudes and legitimizing social inequalities. For others, sociogenomics brings the promise of more robust and nuanced understandings of human behavior. Regardless, a history of misuse and misapplication of genetics raises important questions about researchers’ social responsibilities. This paper draws on semi-structured interviews with sociogenomics researchers who investigate intelligence and educational attainment. It does so to understand how researcher’s motivations for engaging in a historically burdened field connect to their views on social responsibility and the challenges that come with it. In interviews, researchers highlighted the trade-off between engaging in socially contested research and the potential benefits their work poses to the social sciences and clinical research. They also highlighted the dilemmas of engaging with the public, including the existence of multiple publics. Finally, researchers elucidated uncertainties over what social responsibility is in practice and whether protecting against the misuse and misinterpretation of their research is wholly possible. This paper concludes by offering ways to address some of the challenges of social responsibility in the production of knowledge.

The Concussion in Sport Group guidelines have successfully brought the attention of brain injuries to the global medical and sport research communities, and has significantly impacted brain injury-related practices and rules of international sport. Despite being the global repository of state-of-the-art science, diagnostic tools and guides to clinical practice, the ensuing consensus statements remain the object of ethical and sociocultural criticism. The purpose of this paper is to bring to bear a broad range of multidisciplinary challenges to the processes and products of sport-related concussion movement. We identify lacunae in scientific research and clinical guidance in relation to age, disability, gender and race. We also identify, through multidisciplinary and interdisciplinary analysis, a range of ethical problems resulting from conflicts of interest, processes of attributing expertise in sport-related concussion, unjustifiably narrow methodological control and insufficient athlete engagement in research and policy development. We argue that the sport and exercise medicine community need to augment the existing research and practice foci to understand these problems more holistically and, in turn, provide guidance and recommendations that help sport clinicians better care for brain-injured athletes. ispartof: JOURNAL OF MEDICAL ETHICS ispartof: location:England status: Published online

Despite the longstanding debate on definitions of health and disease concepts, and the multitude of accounts that have been developed, no consensus has been reached. This is problematic, as the way we define health and disease has far-reaching practical consequences. In recent contributions it is proposed to view health and disease as practical- and plural concepts. Instead of searching for a general definition, it is proposed to stipulate context-specific definitions. However, it is not clear how this should be realized. In this paper, we review recent contributions to the debate, and examine the importance of context-specific definitions. In particular, we explore the usefulness of analyzing the relation between the practical function of a definition and the context it is deployed in. We demonstrate that the variety of functions that health and disease concepts need to serve makes the formulation of monistic definitions not only problematic but also undesirable. We conclude that the analysis of the practical function in relation to the context is key when formulating context-specific definitions for health and disease. At last, we discuss challenges for the pluralist stance and make recommendations for future research.

With only 5.1% of the population fully vaccinated against COVID-19, Tanzania has one of the lowest vaccination rates in the world and after two years of changing policies regarding the disease, the country struggles to get its vaccination campaign on the rails. In this study, we identify the determinants of COVID-19 vaccination willingness in two villages of the Mvomero district in Eastern Tanzania. Based on survey data, we performed univariate analyses to assess differences in vaccination intention for various social groups, and built a four-dimensional multivariate ordered logistic regression model that comprises respondents' personal and socioeconomic characteristics, the channels through which they get their information, their attitudes and perceptions towards COVID-19, and their social network embeddedness. Only 37.0% of the respondents indicated that they would be willing to get vaccinated against COVID-19. Vaccination willingness differed significantly according to gender, age, educational attainment and religion; with men, the elderly, people with post-secondary education and Catholics and Muslims more likely to accept a vaccine. Predictors of vaccination willingness were gender, age, social media and informal contacts as information sources, perceived effectiveness of the vaccine and of alternative medicine, fear of side effects, a general dislike of vaccines, and the proportion of vaccinated people and the highest value of trust in international organisations in one’s network. Although people’s attitudes and perceptions have the largest share of the explanatory value, our model shows that all four of our model’s building blocks were imperative in explaining vaccination willingness. Therefore, our paper presents a compelling case for the inclusion of respondents' social embeddedness as a common dimension for exploratory models of vaccination willingness.

Attempts to decrease socioeconomic health disparities face various challenges, which include ethical questions about prioritization and value-conflicts. To deal with these questions in a way that takes equal standing as a central value, this paper explores the potential of a relational egalitarian capability approach to local health equity policies. Especially for local health equity policies, a relational egalitarian capability approach seems promising as it offers more perspectives for action and evaluation additional to considerations of distributive justice. To scrutinize if this approach can offer an adequate normative basis for health equity policies and be a helpful ethical guide in practice, five desiderata are identified that a relational egalitarian capability approach to local health equity should fulfil. These desiderata stem from a consideration of political-ethical pluralism and scarcity of time and resources as non-ideal conditions characterizing public policy practice, as well as of three questions that any capability approach should answer to be applicable in practice. For each of the five desiderata, a brief outline is given of what relational egalitarian theories and the capability approach offer in response to the questions implied by these desiderata. Ultimately, these questions need to be answered in relation to specific policies in particular contexts.

This paper focuses on Precision Public Health (PPH), described in the scientific literature as an effort to broaden the scope of precision medicine by extrapolating it towards public health. By means of the “All of Us” (AoU) research program, launched by the National Institutes of Health in the U.S., PPH is being developed based on health data shared through a broad range of digital tools. PPH is an emerging idea to harness the data collected for precision medicine to be able to tailor preventive interventions for at-risk groups. The character of these data concern genetic identity, lifestyle and overall health and therefore affect the ‘intimacy’ of personhood. Through the concept of biological citizenship, we elucidate how AoU and its recruitment tactics, by resonating ‘diversity’, at the same time appeal to and constitute identity, defining individuals as ‘data sharing subjects’. Although PPH is called for; the type of bio-citizenship that is enacted here, has a particular definition, where participant recruitment focuses on ‘citizenship’ in terms of empowerment (front), it is the ‘bio’ prefix that has become the main focus in terms of research. i.e. biosubjectivities vs biocapital. This raises the question whether the societal challenges that often underlie public health issues can be sufficiently dealt with based on the way ‘diversity’ is accounted for in the program. We suggest that the AoU still risks of harming underrepresented groups based on the preconditions and the design of the program.

Resumo O presente artigo procurou compreender como jovens anoréxicas utilizam ambientes virtuais como espaços de sociabilidade para a construção de uma narrativa sobre a anorexia, para ancorar suas experiências pela mutualidade emocional e para validar discursos. Realizou-se análise de conteúdo da sessão de comentários e posts de blogs pró-anorexia sendo identificadas três categorias temáticas: corpo, identidade pessoal e sociabilidade na rede. Observou-se que os blogs são espaços virtuais de sociabilidade e de construção de coletivos identitários. As representações e as vivências pela materialidade corporal alimentam o cyber espaço e são o ponto de partida para compreensão de um fenômeno particular à contemporaneidade, que são as trocas virtuais. Nos blogs localizam-se narrativas corporais que procuram dar coerência ao indivíduo e à sua existência bem como ancorar e legitimar experiências pessoais e validar atitudes pró-anorexia. São reforçados os laços sociais dentro do grupo que se transforma em uma comunidade emocional. Os sentidos dos discursos circulantes permitem inferir que nestes grupos, a materialidade dos corpos anoréxicos se emancipa dos estigmas sociais de doença. Abstract The study presented in this paper aimed at understanding how anorexic young women use virtual environments as spaces of sociability in order to construct a narrative about anorexia, anchor their experiences through emotional mutuality and validate discourses. To do so, an analysis of the content found in the commenting and posting sections of pro-anorexia blogs was carried out. Three thematic categories were identified: body, personal identity and sociability on the web. It was observed that blogs are virtual spaces of sociability and construction of identity groups. The representations and the experiences lived by the corporal materiality feed cyberspace and are the starting point for understanding a phenomenon particular to the contemporaneity, that is the virtual exchanges. In blogs, one can find body narratives that seek to give coherence to an individual and to his or her existence as well as narratives that aim at anchoring and legitimizing personal experiences and validating pro-anorexia attitudes. Social ties are strengthened within the group, which becomes an emotional community. The meanings of the spreading discourses allow us to infer that in these groups, the materiality of anorexic bodies emancipates itself from the social stigmas of a disease.

In April 2020, close to the start of the first U.K. COVID-19 lockdown, the U.K. government announced the development of a COVID-19 contact tracing app, which was later trialled on the U.K. island, the Isle of Wight, in May/June 2020. United Kingdom surveys found general support for the development of such an app, which seemed strongly influenced by public trust. Institutions developing the app were called upon to fulfil the commitment to public trust by acting with trustworthiness. Such calls presuppose that public trust associated with the app can emerge if the conditions for trustworthiness are met and that public trust is simplistic, i.e., linearly the sum of each member of the publics’ individual – U.K. government trust relationship. Drawing on a synthesis of the trust literature and fifteen interviews with members of the public trialling the app on the Isle of Wight, this paper aims to explore what trust mechanisms and relationships are at play when thinking about public trust in the context of the U.K. COVID-19 app. We argue that public trust is a complex social phenomenon and not linearly correlated with institutional trustworthiness. As such, attention needs to widen from calls for trustworthy infrastructures as a way to build public trust, to a deeper understanding of those doing the trusting; in particular, what or whom do people place their trust in (or not) when considering whether using the app and why. An understanding of this will help when trying to secure public trust during the implementation of necessary public health measures. Supplementary Information The online version contains supplementary material available at 10.1007/s11673-021-10127-x.

The use of qualitative research in empirical bioethics is becoming increasingly popular, but its implementation comes with several challenges, such as difficulties in aligning moral epistemology and methods. In this paper, we describe some problems that empirical bioethics researchers may face; these problems are related to a tension between the different poles on the spectrum of scientific paradigms, namely a positivist and interpretive stance. We explore the ideas of narrative construction, ‘genres’ in medicine and dominant discourses in relation to empirical research. We also reflect on the loss of depth and context that may occur with thematic or content analyses of interviews, and discuss the need for transparency about methodologies in empirical bioethics. Drawing on insights from narrative approaches in the social sciences and the clinical-educational discipline of Narrative Medicine, we further clarify these problems and suggest a narrative approach to qualitative interviewing in empirical bioethics that enables researchers to ‘listen (and read) in new ways’. We then show how this approach was applied in the first author’s research project about euthanasia decision-making. In addition, we stress the important ethical task of scrutinizing methodologies and meta-ethical standpoints, as they inevitably impact empirical outcomes and corresponding ethical judgments. Finally, we raise the question whether a ‘diagnostic’, rather than a ‘problem-solving’, mindset could and should be foregrounded in empirical ethics, albeit without losing a commitment to ethics’ normative task, and suggest further avenues for theorizing about listening and epistemic (in)justice in relation to empirical (bio)ethics.

The inclusion of social determinants of health offers a more comprehensive lens to fully appreciate and effectively address health. However, decision-makers across sectors still struggle to appropriately recognise and act upon these determinants, as illustrated by the ongoing COVID-19 pandemic. Consequently, improving the health of populations remains challenging. This paper seeks to draw insights from the literature to better understand decision-making processes affecting health and the potential to integrate data on social determinants. We summarised commonly cited conceptual approaches across all stages of the policy process, from agenda-setting to evaluation. Nine conceptual approaches were identified, including two frameworks, two models and five theories. From across the selected literature, it became clear that the context, the actors and the type of the health issue are critical variables in decision-making for health, a process that by nature is a dynamic and adaptable one. The majority of these conceptual approaches implicitly suggest a possible role for data on social determinants of health in decision-making. We suggest two main avenues to make the link more explicit: the use of data in giving health problems the appropriate visibility and credibility they require and the use of social determinants of health as a broader framing to more effectively attract the attention of a diverse group of decision-makers with the power to allocate resources. Social determinants of health present opportunities for decision-making, which can target modifiable factors influencing health—i.e. interventions to improve or reduce risks to population health. Future work is needed to build on this review and propose an improved, people-centred and evidence-informed decision-making tool that strongly and explicitly integrates data on social determinants of health. Supplementary Information The online version contains supplementary material available at 10.1007/s11524-021-00560-z.

Resumo O presente artigo se propõe a avaliar, a partir das informações da Pesquisa Nacional de Saúde (PNS), 2019, as desigualdades de gênero e raciais no acesso e utilização dos serviços de saúde no Brasil. O objetivo principal é compreender como homens e mulheres, brancos, pretos ou pardos, buscam atendimento médico na Atenção Primária à Saúde, porta de entrada no sistema de saúde brasileiro. As análises sob uma perspectiva de gênero mostram que padrões culturais e sociais afetam ações e escolhas individuais e, em particular, o acesso e uso dos serviços de saúde. Os resultados também indicam que homens e mulheres reproduzem o comportamento de gênero esperado, social e culturalmente construído, que impacta sua autoavaliação de estado de saúde, cuidados e suas exposições ao risco de doença e morte. A análise interseccional revela que as desigualdades raciais se combinam às observadas entre homens e mulheres, exponenciando vulnerabilidades para pessoas de cor ou raça preta ou parda e refletindo as desigualdades socioeconômicas estruturantes da sociedade brasileira. Nesse contexto, a universalidade e a integralidade preconizadas no Sistema Único de Saúde contribuem enquanto política pública para a garantia de direitos, equalização de oportunidades e efetivação do acesso ao atendimento igualitário. Abstract This paper aims to evaluate gender and racial inequalities in the access and use of health services in Brazil Based on the 2019 National Health Survey (PNS). Its main objective is to understand how white, black, or brown men and women seek medical care in Primary Health Care, the gateway to the Brazilian health system. Analyses from a gender perspective show that cultural and social patterns affect individual actions and choices and mainly access to and use of health services. The results also show that men and women reproduce the expected gender behavior, socially and culturally constructed, which impacts their self-assessment of health status, care, and their exposure to the risk of disease and death. The intersectional analysis reveals that racial inequalities are aligned with those observed between men and women, exponentiating vulnerabilities for self-identified black or brown people, reflecting the structural socioeconomic inequalities of Brazilian society. In this context, the universality and integrality recommended in the Unified Health System contribute as a public policy to the guarantee of rights, equalization of opportunities, and adequate access to equal care.

Background Patient advocacy organizations (PAOs) have an increasing influence on health policy and biomedical research, therefore, questions about the specific character of their responsibility arise: Can PAOs bear moral responsibility and, if so, to whom are they responsible, for what and on which normative basis? Although the concept of responsibility in healthcare is strongly discussed, PAOs particularly have rarely been systematically analyzed as morally responsible agents. The aim of the current paper is to analyze the character of PAOs’ responsibility to provide guidance to themselves and to other stakeholders in healthcare. Methods Responsibility is presented as a concept with four reference points: (1) The subject, (2) the object, (3) the addressee and (4) the underlying normative standard. This four-point relationship is applied to PAOs and the dimensions of collectivity and prospectivity are analyzed in each reference point. Results Understood as collectives, PAOs are, in principle, capable of intentionality and able to act and, thus, fulfill one prerequisite for the attribution of moral responsibility. Given their common mission to represent those affected, PAOs can be seen as responsible for patients’ representation and advocacy, primarily towards a certain group but secondarily in a broader social context. Various legal and political statements and the bioethical principles of justice, beneficence and empowerment can be used as a normative basis for attributing responsibility to PAOs. Conclusions The understanding of responsibility as a four-point relation incorporating collective and forward-looking dimensions helps one to understand the PAOs’ roles and responsibilities better. The analysis, thus, provides a basis for the debate about PAOs’ contribution and cooperation in the healthcare sector.

In this paper we explore some of the ways systemic racism operates and is maintained within our health and social services. We look at a very specific context, that of Nunavik Quebec, land and home to 13,000 Nunavimmiut, citizens of Quebec and Canada, signatories of the James Bay and Northern Quebec Agreement. We operationalize some of the ways in which policies and practices create and support social hierarchies of knowledges, also called epistemic racism, and how it impacts our ability to offer quality care that Indigenous peoples can trust and use.

Background With most mental health problems established during childhood/adolescence, young people must be a key focus of public mental health approaches. Despite the range of factors known to influence mental health, evidence for effective interventions is lacking for this age group. This study aimed to define priorities for future public health intervention-focused research to support youth mental health by engaging with transdisciplinary stakeholder groups. Methods Our coproduction approach involved priority-setting workshops with young people, researchers, practitioners and policy-makers. Each workshop focused on three thematic areas: social connections and relationships; schools and other education settings; and key groups at greater risk of mental ill-health, specifically LGBTQ+ and care-experienced young people. Workshop outputs were synthesized to define research priorities. Results This paper presents the research priorities that were defined through the priority-setting workshops, and our reflections on the coproduction approach to guide future similar activities undertaken by others. Ten priorities for youth public mental health research were defined, covering the following areas: building supportive relationships; whole system approaches; social media; support at times of transition; improving links between different services; development and training for those who support young people; staff mental health; engaging with families; awareness of and access to services; and out-of-school and community settings. Conclusions These research priorities can inform future intervention development to support youth public mental health. Our transdisciplinary approach means the identified research priorities are likely to be relevant to young people’s experiences and needs, and to fit with the needs of those working in practice and policy to support young people.

IntroductionHealth and Demographic Surveillance Systems (HDSS) collect data on births, deaths and migration from relatively small, geographically defined populations primarily in Africa and Asia. HDSS occupy a grey area between research, healthcare and public health practice and it is unclear how ethics guidance that rely on a research-practice distinction apply to HDSS. This topic has received little attention in the literature. In this paper, based on empirical research across sub-Saharan Africa, we map out key ethical issues for HDSS and assess the relevance of current ethics guidance in relation to these findings.MethodsWe conducted a qualitative study across seven HDSS sites in sub-Saharan Africa, including individual in-depth interviews and informal discussions with 68 research staff, document reviews and non-participant observations of surveillance activities. Qualitative data analysis drew on a framework approach led by a priori and emergent themes, drawing on the wider ethics and social science literature.ResultsThere were diverse views on core ethical issues in HDSS, including regarding the strengths and challenges of community engagement, informed consent and data sharing processes. A key emerging issue was unfairness in the overall balance of benefits and burdens for residents and front-line staff when compared with other stakeholders, particularly given the socioeconomic contexts in which HDSS are generally conducted.ConclusionWe argue that HDSS operate as non-traditional epidemiologic research projects but are often governed using ethics guidance developed for traditional forms of health research. There is a need for specific ethics guidance for HDSS which prioritises considerations around fairness, cost-effectiveness, ancillary care responsibilities, longitudinality and obligations of the global community to HDSS residents.

In their article, de Groot et al respond to a call to bring investigative genetic genealogy (IGG)i to the bioethical debate.1 They explore the extent to which the ethical approach used in the medical clinical genetics context can be helpful for conceptualising the ethical issues associated with IGG. They conclude that such an individual-based model, which revolves around notions of consent and privacy, has significant limitations in the IGG context. The authors call for a broader balancing of the benefits and risks of IGG, and the need for collective democratic engagement. de Groot et al ’s paper is a welcome addition to the literature—not only because it is an interesting and important analysis in its own right, but also because it foregrounds the importance of bringing forensic genetic debate to the bioethical audience. While forensic genetics (and genomics) has become increasingly widespread in the criminal justice system, bioethicists have often shied away from engaging with the ethical issues these practices raise.ii Perhaps this relates to the narrowing of bioethics debate over the past half a century to focus primarily on health-related issues,iii or to the techno-legal normative separation of DNA analysis in these two sectors, or perhaps both. Either way, as our desire for an ever-increasing collection and analysis of genetic data continues—and as we have seen in the IGG context—the lines between health, forensics and recreational associated DNA analysis and use are set to become …

This paper argues for a version of sceptical invariantism about knowledge on which the acceptability of knowledge-attributing sentences varies with the context of assessment. Publisher PDF

Background: Unlike the large body of research that has examined the ‘success’ or ‘failure’ of eHealth in terms of patient and provider perceptions or cost- and clinical effectiveness, the current study teases out ways through which a novel eHealth initiative in rural northern Sweden might result in more distal or systemic beneficial outcomes. More specifically, this paper aims to explore how and under what circumstances the so-called virtual health rooms (VHRs) are expected to improve access to person-centred care and strengthen community health systems, especially for elderly residents of rural areas. Methods: The first phase of the realist evaluation methodology was conducted, involving qualitative interviews with 8 key stakeholders working with eHealth, business development, digitalisation, and process management. Using thematic analysis and following an abductive-retroductive analytical process, an intervention-context-actor-mechanism-outcome (ICAMO) configuration was developed and elicited into an initial programme theory. Results: The findings indicate that a novel eHealth initiative, which provides reliable technologies in a customized facility that connects communities and providers, might improve access to person-centred care and strengthen community health systems for rural populations. This is theorized to occur if mechanisms acting at individual (such as knowledge, skills and trust) and collective (like a common vision and shared responsibilities) levels are triggered in contexts characterised by supportive societal transitions, sufficient organisational readiness and the harnessing of rural cohesiveness and creativity. Conclusion: The elicited initial programme theory describes and explains how a novel eHealth initiative in rural northern Sweden is presumed to operate and under what circumstances. Further testing, refinements and continued gradual building of theory following the realist evaluation methodology is now needed to ascertain if the ‘VHRs’ work as intended, for whom, in what conditions and why.

How best are we to understand appeals to participate in a biomedical project that are based both on invoking shared racial identity, and on framing engagement as the clear moral course of action? Stem cell donor recruitment, which often focuses on engaging racially minoritised communities, provides useful insight into this question. This article proposes that it is not an essential mutual racial identity between the person asking and the person asked at play. Rather, it is the creative ‘doing’ of relatedness between people at the scale of race as well as family that coalesces into powerful appeals to participate. Through analysis of ethnographic, documentary and social media data, the paper argues that this work relies at least partly on framing donation as a duty of being part of a racialised community, which I describe here as an ethico-racial imperative, in which both race and responsibility become intertwined to compel participation in the biomedical project of donor registration. Supplementary Information The online version contains supplementary material available at 10.1057/s41292-021-00241-9.

Despite renewed policy priorities to universalise health coverage, unmet need for healthcare is long-standing concern in India. The recent data suggests the unmet healthcare need amounts to a notable share of twelve per cent. While studies have examined inequalities in healthcare utilisation in single axes of social power, there was no consensus on the role of the intersectionality between class, caste and gender in shaping the unmet health need. Utilising data from National Sample survey 75th round (2017–18), this paper identifies the factors contributing to such unmet need and investigate the intersectionality of class with caste and gender in determining unmet need. The contribution of socioeconomic factors was assessed by the decomposition method & multivariate logistic regression was used to measure inter and intra-class differentials in unmet need. The analysis informs that class inequality is fundamental to having unmet need with limited role of gender and caste. Economic class however, interacting with caste and gender unfolds wider gaps in access to healthcare. While inter-class differences in unmet need are observed across caste as well as gender, intra-class differences intensify more by caste inequalities. The findings indicate the significance of the intersectional approach in identifying the sources of health inequity and special recognition to the income-poor and socially marginalised in policy agenda. Eliminating the barriers to health care access therefore needs a multidimensional construct of identifying combination of attributes to be focused towards realization of universal health coverage. These observations should aid in formulation and restructuring of the existing healthcare interventions to achieve equity in healthcare provision.

Grounded in intersubjective participatory action research, the people and dancefloors project has sought to pro- duce a space for the co-creation of knowledge about dancefloors and drug taking, building a platform for devel- oping insights from the positionality of current drug users. Through film, it provides hermeneutic insight while legitimising their voices. In this paper, we share some reflections as researchers/users/activists arising from our involvement in the project. To begin with, we reflect on the motivations for the project, and the epistemic suppositions that animated it. This is followed by conversational style interviews where we re-evaluate our position in light of the project, with a particular focus on the tensions that drug use introduces between professional, personal and political domains in our lives. These reflections are useful to people who use drugs and hold privilege by nature of their social and cultural position. While questioning the silencing of personal experiences in relation to drug use, we also react to some of the traditional tendencies of academia, including institutionalised individualism, which isolates researchers and discourages them from finding political collectivity, and the subjectivist/objectivist dichotomy, which supports a tendency to objectify research participants while removing the self from the equation. Despite the challenges that arise from disentangling our multiple experiences and identities, our intersubjective dialogue inspires deeper learning about ourselves and each other, encouraging us towards a more openly political stance.

Intersectionality is a theoretical framework that investigates how interlocking systems of power and oppression at the societal level influence the lived experiences of historically and socially marginalized groups. Currently, there are no consistent or widely adopted quantitative methods to investigate research questions informed by intersectionality theory. The objective of this systematic review is to describe the current landscape of quantitative methods used to assess intersectionality and to provide recommendations on analytic best practices for future research. We searched PubMed, EMBASE, and the Web of Science in December 2019 to identify studies using analytic quantitative intersectionality approaches published up to December 2019 (PROSPERO CRD42020162686). To be included in the study, articles had to: (1) be empirical research, (2) use a quantitative statistical method, (3) be published in English, and (4) incorporate intersectionality. Our initial search yielded 1889 articles. After screening by title/abstract, methods, and full text review, our final analytic sample included 153 papers. Eight unique classes of quantitative methods were identified, with the majority of studies employing regression with an interaction term. We additionally identified several methods which appear to be at odds with the key tenets of intersectionality. As quantitative intersectionality continues to expand, careful attention is needed to avoid the dilution of the core tenets. Specifically, emphasis on social power is needed as methods continue to be adopted and developed. Additionally, clear explanation of the selection of statistical approaches is needed and, when using regression with interaction terms, researchers should opt for use of the additive scale. Finally, use of methods that are potentially at odds with the tenets of intersectionality should be avoided.

This perspective paper examines some common barriers to effective participation in the healthcare system experienced by deaf people. The presentation of research and policy is considered from a deaf perspective and in the context of the challenges and opportunities raised by responses to the coronavirus disease 2019 (COVID-19) pandemic.

Scholars in the field of population health need to be on the constant lookout for the danger that their tacit ideological commitments translate into systematic biases in how they interpret their empirical results. This contribution illustrates this problematic by critically interrogating a set of concepts such as tradition, trust, social capital, community, or gender, that are routinely used in population health research even though they carry a barely acknowledged political and ideological load. Alongside this wider deconstruction of loaded concepts, I engage critically but constructively with Martin Lindstrom et al.'s paper “Social capital, the miniaturization of community, traditionalism and mortality: A population-based prospective cohort study in southern Sweden” to evaluate the extent to which it fits with other empirical findings in the extant literature. Taking as a point of departure the intriguing finding that social capital predicts cardiovascular and all-cause mortality only for men, but not for women, I argue that future research on the nexus of social capital, health, and mortality needs to frame gender not only as a demographic and statistical variable, but also as an ontological conundrum and as an epistemological sensibility.

With the increased attention and demand on community-based palliative and end-of-life (EOL) care services comes the question of how to ensure their sustainability. Sustainability has three key attributes: acceptability, affordability and adaptability. Having established the acceptability and affordability of the community-based service, this paper focussed on adaptability, as the remaining issue affecting long-term sustainability. The aim of this study was to identify components of the palliative and EOL service which require adaptability to ensure long-term sustainability for the service. A mixed methods approach was used for this study. Semi-structured interviews were conducted with family members. Semi-structured focus groups and interviews were held with health professionals. Patient data were included to describe frequency and nature of contacts. The results were analysed using descriptive analysis. The setting was a rural town in Victoria, Australia. Nine family members were interviewed, and 16 health professionals were interviewed or took part in a focus group. Patient data included 121 participants. Four themes were identified: the uniqueness of the patient, workforce issues, collaboration between services and symptom and pain management. All themes indicated that the palliative and EOL service faces challenges which may threaten the sustainability of the service and require adaptability. Families regard palliative and EOL care as special and valued, and appreciate the endeavour, care and support taken to assist their loved one to die with dignity regardless of the location and setting. With sufficient attention paid to the adaptability of the service, community palliative and EOL care service can become more sustainable, thus offering choice and dignity for people approaching the end of life.

Introduction: Although many countries have been implementing integrated care, the scale-up remains difficult. Macro-level system barriers play an important role. This is also the case in Belgium, which has a complex governing system where both the federal and federated governments have responsibilities concerning health care. By selecting three key policies, which have implemented integrated care in Belgium over the last 10 years (the federal care trajectory for diabetes, the joint plan for the chronically ill and the reform of primary care in Flanders), we aim to go beyond the identification of their specific barriers and facilitators to obtain an overarching generic view.Methods: 27 participants were purposefully selected, to include all important stakeholders involved on the macro-level in chronic care in Belgium. Policymakers, public administrators, finance stakeholders, provider organisations, user and patient groups and scientific stakeholders were included. Semi-structured interviews were guided by a timeline of policies and performed by two researchers. The main topics of the interview guide were: stakeholder role, their understanding of integrated chronic care, and the barriers to and facilitators of the development and implementation of integrated care policies. The interviews were transcribed verbatim and an inductive thematic analysis was performed and repeatedly discussed within the team.Results: Stakeholders had diverse interpretations of integrated care, but agreed that implementation of integrated care in Belgium is still suboptimal. Barriers and facilitators were identified on both health care and policy level. A major barriers is the fee-for-service system, which does not stimulate cooperation nor quality of care. Within the topic of data sharing, many strategies have been formulated, but the implementation lacks, which hinders again cooperation. A last major barrier is the fragmentation of responsibilities between different levels of government. It leads to confusion, but mainly it hinders integrated care as different policy-makers head in different directions and so it is difficult to align plans, especially on the long term. Remarkably, these factors strongly interact.Conclusion: The scale-up of integrated care is influenced by multiple factors, which interact with each other. The preparedness to change at both the policy level and health care level will be key to triggering a transformation leading to integrated care. However, important barriers, are hindering a much needed change to the entire Belgian health care system and a shift towards integrated care. Implications: This paper highlights the importance of homogenization of responsibilities of governments regarding integrated care and the interdependency of policy and health care system factors. A whole system change is needed instead of the current Belgian model of prolonged search for common ground between conflicting opinions. A focus on the financing system seems important in this regard. Political commitment and citizen participation will be crucial.

Purpose The aim of this paper is to explore government service usage across the domains of health, justice, and social development and tax for a cohort of formerly homeless people in Aotearoa New Zealand, focusing specifically on the experiences of women. The Integrated Data Infrastructure is used, which links our de-identified cohort data with administrative data from various Aotearoa New Zealand Government departments. Results Of the cohort of 390, the majority (53.8%) were women. These women were more likely to be younger (57.1% were aged 25–44), indigenous Māori (78.6%), and have children (81.4%). These women had lower incomes, and higher rates of welfare benefit receipt, when compared to men in the cohort and a control group of women from the wider population. Conclusions The cohort were primarily female, younger, Māori, and parents. They earned much less than their non-homeless counterparts, and relied heavily on government support. The neoliberalisation of the welfare state, high rates of women's poverty, and the gendered nature of parenthood means that women's homelessness is distinct from men's homelessness., Highlights • The cohort had distinct government service usage when compared to a cohort of homeless men, and non-homeless women. • The cohort were more likely to be Māori, younger, and parents. • The cohort required greater levels of income support than homeless men and non-homeless women.

Introduction There is growing evidence to demonstrate that engaging and empowering local communities is essential for citizens’ wellbeing and for the care system to function effectively. Integrated Community Care (ICC) is an emerging concept based on people-centred principles, which requires new cross-sectoral and interdisciplinary partnerships to be formed between citizens, families and informal carers, health and social care services, schools, volunteer organisations, local authorities and other resources found in communities and neighbourhoods. This paper highlights main lessons learned from a three-year international project aiming to explore the key principles and the fundamental premises of successful implementation of ICC. Policy context and objective The Transnational Forum for ICC is a joint international initiative of foundations, involving a worldwide mapping of promising practices of ICC, a series of four conferences and 15 site visits. The mapping retrieved promising cases of ICC demonstrating assets-based, goal-oriented and people-driven approaches to enhance population health and their quality of life. Conference delegates include senior policymakers, practitioners, researchers and representatives from the philanthropic sector. Experts-by-experience participate in all conferences and are invited to share their reflections and knowledge, in effect grounding all conference discussions. Targeted populations Communities and vulnerable populations Highlights The key elements facilitating community mobilisation retrieved from the project activities include: •Peer-to-peer support (e.g. elders fighting loneliness and isolation and supporting independent living through informal neighbourhood networking and social activities) •Co-designed, easy access and non-judgemental services (e.g. a one-stop-shop for adolescents with mental health challenges focusing on prevention and early intervention) •Volunteering (e.g. a local time-bank where people offer their time and spend it with people with physical, mental or cognitive health impairment, altering the way people with disabilities are perceived) •Non-institutional meeting places (e.g. social, cultural and recreational activities for local children and families and with access to healthcare professionals for those who need it) •Training of laymen as wellbeing coaches or link workers (e.g. social prescribing, where trained citizens connect persons asking for help with community resources) •Emphasis on kindness and recognising civic knowledge as part of the solution (e.g. the Compassionate Communities’ movement or allowing professionals to act in a more humanistic approach in care settings) •Place-based governance and mutual accountability: from power held by few to power held by all. From hierarchical leadership to leaders being led by lived experience, acting as guides and coaches Transferability ICC can be defined by its diversity, complexity and dynamism. The key elements provide a guidance on how ICC can be transferred and adapted to other regions and countries based on local needs and resources. Conclusion Community participation and co-creation require new, constantly learning management structures, stimulation of trusting partnerships at all levels and formalisation of the role of peers and volunteers. By improving communication and relationship across generations, asking what kind of life people want to live and facilitating participation, all individuals can become their own problem solvers. Future research should explore relevant impact evaluation methods of ICC, how social determinants of health can be better addressed and hybrid funding models. d funding models.

In the paper ‘Genetic information, insurance, and a pluralistic approach to justice’, Jonathan Pugh1 develops an argument from unresolved pluralism in our theories of justice, via the pluralism this occasions in relation to the specific question of the use of genetic test results (GTRs) in insurance underwriting, to the conclusion that the UK regulatory approach in relation to the use of GTRs in insurance is broadly correct.1 Pugh’s argument is wide-ranging and I cannot provide a complete critique of it in this short comment, but I will gesture towards some strands of the argument that are potentially problematic. The first potential problem in the argument is that Pugh bases his argument on a very extensive range of accounts of justice, including pure maximising consequentialism (he calls it ‘utilitarianism’), strict egalitarianism and libertarianism, among many others. If these are all accounts of justice, it is not strange that there is pluralism of conclusions in relation to a specific question of justice or discrimination, such as the use of GTRs in the underwriting of specific kinds of insurance contracts. Pugh’s range, for instance, includes accounts of justice that deny the direct importance of distributive concerns as well as accounts that see distributive concerns as crucial. These accounts disagree not only about the answer to Pugh’s question but also about whether taxation is theft, a legislated minimum wage can be justified and many other justice issues that are settled in modern welfare states. This matters because there is an unacknowledged slide in Pugh’s use of the fact of pluralism in his arguments, for example, when he writes