In critique of anthropocentrism: a more-than-human ethical framework for antimicrobial resistance.

Antimicrobial resistance (AMR) is often framed as a One Health issue, premised on the interdependence between human, animal and environmental health. Despite this framing, the focus across policymaking, implementation and the ethics of AMR remains anthropocentric in practice, with human health taking priority over the health of non-human animals and the environment, both of which mostly appear as secondary elements to be adjusted to minimise impact on human populations. This perpetuates cross-sectoral asymmetries whereby human health institutions have access to bigger budgets and technical support, limiting the ability of agricultural, animal health or environmental institutions to effectively implement policy initiatives. In this article, we review these asymmetries from an ethical perspective. Through a review and analysis of contemporary literature on the ethics of AMR, we demonstrate how the ethical challenges and tensions raised still emerge from an anthropocentric framing, and argue that such literature fails to address the problematic health hierarchies that underlie policies and ethics of AMR. As a consequence, they fail to provide the necessary tools to ethically evaluate the more-than-human challenges that the long list of actors involved in managing AMR face in their everyday practices. In response to such shortcomings, and to make sense of these challenges and tensions, this article develops an ethical framework based on relationality, care ethics and ambivalence that attends to the more-than-human character of AMR. We formulate this approach without overlooking everyday challenges of implementation by putting the framework in conversation with concrete situations from precarious settings in West Africa. This article concludes by arguing that a useful AMR ethics framework needs to consider and take seriously non-human others as an integral part of both health and disease in any given ecology.

Supporting LGBTQ+ Students: A Focus Group Study with Junior High School Nurses.

LBGTQ+ students often miss the support and information they need in the school nursing, but little is known about junior high school (JHS) nurses' work with LGBTQ+ students. 15 JHS nurses were interviewed in focus groups about their perceptions of supporting LGBTQ+ students. Four interconnected themes were identified with inductive thematic analysis: (1) JHS nurses' professional identity and practice; (2) Recognition of sexual and gender diversity in school; (3) Family acceptance process; and (4) LGBTQ+ students as school nursing clients. JHS nurses self-identified as accepting professionals, but having limited skills, knowledge, and education needed in supporting LGBTQ+ students. Supporting LGBTQ+ students is a complex phenomenon, and to enhance JHS nurses' competence in providing care for these students, sexual and gender diversity needs to be included in evidence-based nursing information sources, covered in nursing education, and the school needs to be secured as LGBTQ+ safe place.

LGBTQ+ Students' Experiences of Junior High School Nursing in Finland: A Qualitative Study.

Previous research shows that lesbian, gay, bisexual, transgender, queer/questioning, and other (LGBTQ+) students can experience substantial emotional- and health-related issues at school, but research into LGBTQ+ students' experiences of school nursing is limited. This qualitative study describes the experiences of Finnish LGBTQ+ students engaging with junior high school nurses. Data were collected from 35 LGBTQ+ students using an online survey tool comprising of a set of open-ended questions. Two interconnecting themes were identified following thematic analysis: (1) junior high school nurse engagement: a mixed or unsatisfactory experience and (2) LGBTQ+ students' needs for diversity-affirming junior high school nursing. Findings show that LGBQT+ students felt junior high school nurse engagement was often unsupportive with issues around their sexuality and gender identity. LGBTQ+ students expressed the need for diversity-affirming information and support in school settings. Further research from school nurses' perspective is needed to increase understanding of this topic.

Structural coercion in the context of community engagement in global health research conducted in a low resource setting in Africa.

BACKGROUND: While community engagement is increasingly promoted in global health research to improve ethical research practice, it can sometimes coerce participation and thereby compromise ethical research. This paper seeks to discuss some of the ethical issues arising from community engagement in a low resource setting. METHODS: A qualitative study design focusing on the engagement activities of three biomedical research projects as ethnographic case studies was used to gain in-depth understanding of community engagement as experienced by multiple stakeholders in Malawi. Data was collected through participant observation, 43 In-depth interviews and 17 focus group discussions with community leaders, research staff, community members and research participants. Thematic analysis was used to analyse and interpret the findings. RESULTS: The results showed that structural coercion arose due to an interplay of factors pertaining to social-economic context, study design and power relations among research stakeholders. The involvement of community leaders, government stakeholders, and power inequalities among research stakeholders affected some participants' ability to make autonomous decisions about research participation. These results have been presented under the themes of perception of research as development, research participants' motivation to access individual benefits, the power of vernacular translations to influence research participation, and coercive power of leaders. CONCLUSION: The study identified ethical issues in community engagement practices pertaining to structural coercion. We conclude that community engagement alone did not address underlying structural inequalities to ensure adequate protection of communities. These results raise important questions on how to balance between engaging communities to improve research participation and ensure that informed consent is voluntarily given.

'We are the eyes and ears of researchers and community': Understanding the role of community advisory groups in representing researchers and communities in Malawi.

Community engagement to protect and empower participating individuals and communities is an ethical requirement in research. There is however limited evidence on effectiveness or relevance of some of the approaches used to improve ethical practice. We conducted a study to understand the rationale, relevance and benefits of community engagement in health research. This paper draws from this wider study and focuses on factors that shaped Community Advisory Group (CAG) members' selection processes and functions in Malawi. A qualitative research design was used; two participatory workshops were conducted with CAG members to understand their roles in research. Workshop findings were triangulated with insights from ethnographic field notes, key informant interviews with stakeholders, focus group discussions with community members and document reviews. Data were coded manually and thematic content analysis was used to identify main issues. Results have shown that democratic selection of CAG members presented challenges in both urban and rural settings. We also noted that CAG members perceived their role as a form of employment which potentially led to ineffective representation of community interests. We conclude that democratic voting is not enough to ensure effective representation of community's interests of ethical relevance. CAG members' abilities to understand research ethics, identify potential harms to community and communicate feedback to researchers is critical to optimise engagement of lay community and avoid tokenistic engagement.

Negotiating Collective and Individual Agency: A Qualitative Study of Young Women's Reproductive Health in Rural India.

The societal changes in India and the available variety of reproductive health services call for evidence to inform health systems how to satisfy young women's reproductive health needs. Inspired by Foucault's power idiom and Bandura's agency framework, we explore young women's opportunities to practice reproductive agency in the context of collective social expectations. We carried out in-depth interviews with 19 young women in rural Rajasthan. Our findings highlight how changes in notions of agency across generations enable young women's reproductive intentions and desires, and call for effective means of reproductive control. However, the taboo around sex without the intention to reproduce made contraceptive use unfeasible. Instead, abortions were the preferred method for reproductive control. In conclusion, safe abortion is key, along with the need to address the taboo around sex to enable use of "modern" contraception. This approach could prevent unintended pregnancies and expand young women's agency.

Public/community engagement in health research with men who have sex with men in sub-Saharan Africa: challenges and opportunities.

BACKGROUND: Community engagement, incorporating elements of the broader concepts of public and stakeholder engagement, is increasingly promoted globally, including for health research conducted in developing countries. In sub-Saharan Africa, community engagement needs and challenges are arguably intensified for studies involving gay, bisexual and other men who have sex with men, where male same-sex sexual interactions are often highly stigmatised and even illegal. This paper contextualises, describes and interprets the discussions and outcomes of an international meeting held at the Kenya Medical Research Institute-Wellcome Trust in Kilifi, Kenya, in November 2013, to critically examine the experiences with community engagement for studies involving men who have sex with men. DISCUSSION: We discuss the ethically charged nature of the language used for men who have sex with men, and of working with 'representatives' of these communities, as well as the complementarity and tensions between a broadly public health approach to community engagement, and a more rights based approach. We highlight the importance of researchers carefully considering which communities to engage with, and the goals, activities, and indicators of success and potential challenges for each. We suggest that, given the unintended harms that can emerge from community engagement (including through labelling, breaches in confidentiality, increased visibility and stigma, and threats to safety), representatives of same-sex populations should be consulted from the earliest possible stage, and that engagement activities should be continuously revised in response to unfolding realities. Engagement should also include less vocal and visible men who have sex with men, and members of other communities with influence on the research, and on research participants and their families and friends. Broader ethics support, advice and research into studies involving men who have sex with men is needed to ensure that ethical challenges - including but not limited to those related to community engagement - are identified and addressed. Underlying challenges and dilemmas linked to stigma and discrimination of men who have sex with men in Africa raise special responsibilities for researchers. Community engagement is an important way of identifying responses to these challenges and responsibilities but itself presents important ethical challenges.

Mistrust: Community engagement in global health research in coastal Kenya.

This article explores a case of mistrust in global health research and community engagement. It uses ethnographic material collected in 2014 and 2016 in Kenya, concerning community engagement by a HIV vaccine research group working with men who have sex with men and transgender women. In 2010, the research group was attacked by members of the wider community. Following the attack, the research group set up an engagement program to reduce mistrust and re-build relationships. Analysis focusing on mistrust shows the dynamics underlying the conflict: Norms around gender and sexuality, political support for LGBTIQ+ rights, and resources disparities were all at stake for those embroiled in the conflict, including researchers, study participants, religious leaders, and LGBTIQ+ activists in the region. Rather than a normative good with liberatory potential, community engagement in this paper is discussed as a relational tool with which mistrust was managed, highlighting the fragility of participation.

A critical examination of research narratives 'rumours' and passive community resistance in medical research.

Several studies in Africa have reported effects of 'rumours, misconceptions or misinformation' on medical research participation and uptake of health interventions. As such, community engagement has sometimes been used for instrumental purposes to enhance acceptability of research or interventions and prevent 'rumours'. This paper seeks to highlight the value of ongoing engagement with communities to understand research narratives 'rumours' reproduced in medical research. We demonstrate that 'rumours' are a form of divergent communication or local interpretation of medical research that needs critical attention, and we question the ethics of dismissing such divergent communication.This paper draws on experiences from ethnographical research, which aimed to understand community engagement in medical research projects conducted in Malawi. We observed that even though community meetings were held to improve participation, 'rumours' about research influenced decision making. 'Rumours' presented local critiques of medical research, legitimate concerns informed by historical experiences and local conceptualisation of health. Structural inequalities, negative outcomes or absence of visible benefits following research participation informed unmet expectations, discontent with research and consequently passive resistance. The sociocultural context where participating research communities often rely on social networks for information nurtured propagation of these divergent perspectives to inform lay discourse around medical research.We conclude that ongoing engagement, critical self-reflection and attempts to decode deeper meaning of 'rumours' throughout research implementation is necessary, to show respect and address community concerns expressed through 'rumours', enhance informed participation and adoption of future health interventions.

Closing the GAP in Antimicrobial Resistance Policy in Benin and Burkina Faso.

Antimicrobial resistance (AMR) is a global concern that is geographically unevenly distributed, with low- and middle-income countries and African countries suffering in particular. The World Health Organization (WHO) Global Action Plan (GAP) for antimicrobial resistance identified five key objectives that aim to ensure the continued treatment and prevention of infectious diseases with the use of antibiotics. Countries signatory to the WHO GAP are expected to develop their own national action plans (NAPs) based on the global model. How low-income countries are able to achieve the GAP objectives is not well understood. This paper analyzes the progress of two West African countries in achieving the GAP targets, Benin and Burkina Faso, countries among the lowest bracket in the World Development Index. We present qualitative data from interviews and focus group discussions with local policy-makers, nurses, doctors, animal breeders, veterinarians, and laboratory researchers, supported by participant observations and surveys within rural communities. The analysis is organized according to the five WHO GAP objectives to show the countries' challenges in fulfilling them. The analysis shows that there are shortcomings in all of the WHO GAP areas in the two countries, making it a compounded and multifactorial problem-a stacking of lacks. In such contexts, calibrating a society toward AMR resilience/prevention requires overall development and attention to interdependencies. Active local research and policy communities with international, sustained financial support are essential for achieving the targets. IMPORTANCE The burden of antimicrobial resistance (AMR) is unequally distributed across the globe. Low-income countries face a more severe AMR situation and have fewer means to solve the problem. This paper brings out the voices of local experts, policy-makers, and members of the community in Benin and Burkina Faso across human health, animal health, and food production sectors, where the majority of antibiotic use is concentrated. We describe the difficulties that they face in implementing global action plans, targets set by the World Health Organization, for securing antibiotics and preventing the spread of antimicrobial resistance. This paper argues that the various deficits in implementation are stacked, multisectoral, and compounded. We highlight the role of active local scientists and policy-maker networks in setting priorities to address the AMR problem; however, their activities need technical and financial support from international partners.

Toward a Symbiotic Perspective on Public Health: Recognizing the Ambivalence of Microbes in the Anthropocene.

Microbes evolve in complex environments that are often fashioned, in part, by human desires. In a global perspective, public health has played major roles in structuring how microbes are perceived, cultivated, and destroyed. The germ theory of disease cast microbes as enemies of the body and the body politic. Antibiotics have altered microbial development by providing stringent natural selection on bacterial species, and this has led to the formation of antibiotic-resistant bacterial strains. Public health perspectives such as "Precision Public Health" and "One Health" have recently been proposed to further manage microbial populations. However, neither of these take into account the symbiotic relationships that exist between bacterial species and between bacteria, viruses, and their eukaryotic hosts. We propose a perspective on public health that recognizes microbial evolution through symbiotic associations (the hologenome theory) and through lateral gene transfer. This perspective has the advantage of including both the pathogenic and beneficial interactions of humans with bacteria, as well as combining the outlook of the "One Health" model with the genomic methodologies utilized in the "Precision Public Health" model. In the Anthropocene, the conditions for microbial evolution have been altered by human interventions, and public health initiatives must recognize both the beneficial (indeed, necessary) interactions of microbes with their hosts as well as their pathogenic interactions.

How Civil Society Organisations Changed the Regulation of Clinical Trials in India.

In 2005 India changed its pharmaceutical and innovation policy that facilitated a dramatic increase in international clinical trials involving study sites in India. This policy shift was surrounded by controversies; civil society organisations (CSOs) criticised the Indian government for promoting the commercialisation of pharmaceutical research and development. Health social movements in India fought for social justice through collective action, and engaged in normative reasoning of the benefits, burdens and equality of research. They lobbied to protect trial participants from structural violence that occurred especially in the first 5-6 years of the new policy. CSOs played a major role in the introduction of new regulations in 2013, which accelerated a decline in the number of global trials carried out in India. This activism applied interpretations of global social justice as key ideas in mobilisation, eventually helping to institutionalise stricter ethical regulation on a national level. Like government and industry, activists believed in randomised controlled trials and comparison as key methods for scientific knowledge production. However, they had significant concerns about the global hierarchies of commercial pharmaceutical research, and their impact on the rights of participants and on benefits for India overall. Pointing to ethical malpractices and lobbying for stricter ethical regulations, they aimed to ensure justice for research participants, and developed effective strategies to increase controls over the business side of clinical research.

Encountering sexual and gender minority youth in healthcare: an integrative review.

AIM: To describe the encounters with sexual and gender minority (SGM) youth in healthcare based on the existing research. BACKGROUND: The development of sexual orientation and gender identity can create challenges in an SGM youth's life, and they may need support from health professionals. Heteronormativity has been recognised as a barrier to the identification of diversity in sexuality and gender, and no previous literature review has studied heteronormativity thoroughly. METHODS: An integrative review following Whittemore and Knafl was conducted. A literature search was systematically undertaken in six databases (PubMed/MEDLINE, CINAHL, Cochrane Library, PsycINFO, Eric, and Academic Search Premier). Finally, 18 research articles were included. Data were analysed deductively with the theoretical framework from Stevi Jackson's (2006) article to understand the role of heteronormativity in the healthcare of SGM youth. FINDINGS: The encounters with SGM youth consisted of two simultaneous themes. Heteronormative care included three elements: (1) the effect of heteronormativity on health professionals' competence to work with SGM youth, (2) false assumptions about SGM youth, and (3) the influence of heteronormativity on encounters with SGM youth. Diversity-affirming care included two elements: (4) the considerateness of health professionals towards SGM youth and (5) inclusive care of SGM youth. CONCLUSION: This review summarised how SGM youth were encountered in healthcare and how heteronormativity was affecting their healthcare. Furthermore, this review identified elements that supported diversity-affirming care. With diversity-affirming care, SGM youth may access the information and support they need from healthcare. Further research is needed about how diversity-affirming care can be applied to the healthcare of SGM youth and how elements of heteronormative care are occurring globally in the healthcare of SGM youth. The perceptions of transgender and other gender minority youth were under-represented in the studies and research needs to focus more on how they are encountered in healthcare.

Engaging religious leaders to support HIV prevention and care for gays, bisexual men, and other men who have sex with men in coastal Kenya.

In Kenyan communities, religious leaders are important gatekeepers in matters of health and public morality. In a context that is generally homophobic, religious leaders may aggravate or reduce stigmatization of sexual minorities such as gay and bisexual men, and other men who have sex with men (GBMSM). Literature indicates mixed results in efforts to encourage religious leaders to work effectively and sensitively with issues regarding HIV and sexuality. This paper describes the implementation of an engagement intervention with religious leaders from different denominations, which took place following a homophobic hate attack that was led by local religious leaders, at an HIV research clinic for GBMSM on the Kenyan coast. After the homophobic attack, tailored engagement activities, including a comprehensive four-day online sensitivity training course took place between June 2015 and October 2016 in the Kenyan coast. HIV researchers, together with trained GBMSM activists, organized the series of engagement activities for religious leaders which unfolded iteratively, with each subsequent activity informed by the results of the previous one. Facilitated conversations were used to explore differences and disagreements in relation to questions of scripture, mission, HIV, and human sexuality. As a result, researchers noted that many religious leaders, who initially expressed exceedingly negative attitudes towards GBMSM, started to express far more accepting and supportive views of sexuality, sexual identities, and same-sex relations. This paper describes the changes in religious leaders' discourses relating to GBMSM, and highlights the possibility of using engagement interventions to build trust between research institutes, religious leaders, and GBMSM.

"Facing Our Fears": Using facilitated film viewings to engage communities in HIV research involving MSM in Kenya.

Kenya is a generally homophobic country where homosexuality is criminalised and people who engage in same sex sexuality face stigma and discrimination. In 2013, we developed a 16 min documentary entitled "Facing Our Fears" that aimed at sharing information on how and why men who have sex with men (MSM) are involved in on-going KEMRI HIV prevention research, and associated community engagement. To consider the film's usefulness as a communication tool, and its perceived security risks in case the film was publicly released, we conducted nine facilitated viewings with 122 individuals representing seven different stakeholder groups. The documentary was seen as a strong visual communication tool with potential to reduce stigma related to homosexuality, and facilitated film viewings were identified as platforms with potential to support open dialogue about HIV research involving MSM. Despite the potential, there were concerns over possible risks to LGBT communities and those working with them following public release. We opted-giving emphasis to the "do no harm" principle-to use the film only in facilitated settings where audience knowledge and attitudes can be carefully considered and discussed. The results highlight the importance of carefully assessing the range of possible impacts when using visuals in community engagement.

Big-pharmaceuticalisation: clinical trials and Contract Research Organisations in India.

The World Trade Organisation's Trade Related Intellectual Property Rights [TRIPS] agreement aimed to harmonise intellectual property rights and patent protection globally. In India, the signing of this agreement resulted in a sharp increase in clinical trials since 2005. The Indian government, along with larger Indian pharmaceutical companies, believed that they could change existing commercial research cultures through the promotion of basic research as well as attracting international clinical trials, and thus create an international level, innovation-based drug industry. The effects of the growth of these outsourced and off-shored clinical trials on local commercial knowledge production in India are still unclear. What has been the impact of the increasing scale and commercialisation of clinical research on corporate science in India? In this paper we describe Big-pharmaceuticalisation in India, whereby the local pharmaceutical industry is moving from generic manufacturing to innovative research. Using conceptual frameworks of pharmaceuticalisation and innovation, this paper analyses data from research conducted in 2010-2012 and describes how Contract Research Organisations (CROs) enable outsourcing of randomised control trials to India. Focussing on twenty-five semi-structured interviews CRO staff, we chart the changes in Indian pharmaceutical industry, and implications for local research cultures. We use Big-pharmaceuticalisation to extend the notion of pharmaceuticalisation to describe the spread of pharmaceutical research globally and illustrate how TRIPS has encouraged a concentration of capital in India, with large companies gaining increasing market share and using their market power to rewrite regulations and introduce new regulatory practices in their own interest. Contract Research Organisations, with relevant, new, epistemic skills and capacities, are both manifestations of the changes in commercial research cultures, as well as the vehicles to achieve them. These changes have reinvigorated public concerns that stress not only access to new medicines but also the 'price' of innovation on research participants.

Theorising the 'human subject' in biomedical research: international clinical trials and bioethics discourses in contemporary Sri Lanka.

The global spread of clinical trials activity is accompanied by a parallel growth in research governance and human subject protection. In this paper we analyse how dominant ideas of the 'human subject' in clinical trials are played out in countries that are deemed to be scientifically under-developed. Specifically, we show how rhetorics of individualism, rationality and autonomy implicit in international ethical guidelines governing human subject research are operationalised and localised. We give insights into the ways in which new knowledge forms become embedded in practice. Using the recent upsurge in clinical trials in Sri Lanka as a case study, based on interviews with 23 doctors and researchers carried out during ethnographic fieldwork between 2008-2009, this article explores the tensions that arise for doctors involved with the promotion of bioethics and the attempts to bring local research governance up to international standards. The doctors and researchers intercept, interpret and critique the notions of human subject implicit in new forms of research governance. From their accounts we have identified two concerns. The first is a critique of dominant ideas of the 'human subject' that is informed by ideas of patiency rooted in paternalistic notions of the doctor-patient relationship. Second, 'human subjects' are seen as gendered, and located within family relationships. Both of these bring into question the research subjects' ability to give informed consent and compromise the ideal of an autonomous subject.