Background: There is general consensus internationally that unfair distribution of the benefits of research is exploitative and should be avoided or reduced. However, what constitutes fair benefits, and the exact nature of the benefits and their mode of provision can be strongly contested. Empirical studies have the potential to contribute viewpoints and experiences to debates and guidelines, but few have been conducted. We conducted a study to support the development of guidelines on benefits and payments for studies conducted by the (...) KEMRI-Wellcome Trust programme in Kilifi, Kenya. Methods: Following an initial broad based survey of cash, health services and other items being offered during research by all programme studies (n = 38 studies), interviews were held with research managers (n = 9), and with research staff involved in 8 purposively selected case studies (n = 30 interviewees). Interviews explored how these ‘benefits’ were selected and communicated, experiences with their administration, and recommendations for future guidelines. Data fed into a consultative workshop attended by 48 research staff and health managers, which was facilitated by an external ethicist.FindingsThe most commonly provided benefits were medical care (for example free care, and strengthened quality of care), and lunch or snacks. Most cash given to participants was reimbursement of transport costs (for example to meet appointments or facilitate use of services when unexpectedly sick), but these payments were often described by research participants as benefits. Challenges included: tensions within households and communities resulting from lack of clarity and agreement on who is eligible for benefits; suspicion regarding motivation for their provision; and confusion caused by differences between studies in types and levels of benefits. Conclusions: Research staff differed in their views on how benefits should be approached. Echoing elements of international benefit sharing and ancillary care debates, some research staff saw research as based on goodwill and partnership, and aimed to avoid costs to participants and a commercial relationship; while others sought to maximise participant benefits given the relative wealth of the institution and the multiple community needs. An emerging middle position was to strengthen collateral or indirect medical benefits to communities through collaborations with the Ministry of Health to support sustainability. (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)

International research guidance has shifted towards an increasingly proactive inclusion of children and adolescents in health research in recognition of the need for more evidence-based treatment. Strong calls have been made for the active involvement of children and adolescents in developing research proposals and policies, including in decision-making about research participation. Much evidence and debate on this topic has focused on high-income settings, while the greatest health burdens and research gaps occur in low-middle income countries, highlighting the need to take (...) account of voices from more diverse contexts. Between January and March 2014, 56 community representatives and secondary school students were involved in eight group discussions to explore views on the acceptability of involving children and adolescents in research, and how these groups should be involved in decision-making about their own participation. Discussions were voice-recorded and transcriptions analyzed using Framework Analysis, combining deductive and inductive approaches. Across these discussions, the idea of involving children and adolescents in decision-making about research participation was strongly supported given similar levels of responsibility carried in everyday life; existing capacity that should be recognized; the opportunity for learning involved; varying levels of parental control; and generational shifts towards greater understanding of science for adolescents than their parents. Joint decision-making processes were supported for older children and adolescents, with parental control influenced by perceptions of the risks involved in participation. Moves towards more active involvement of children and adolescents in planning studies and in making decisions about their participation are supported by these findings from Kenya. Important emerging considerations include the need to take account of the nature of proposed studies and prevailing attitudes and understanding of research in identifying children’s and adolescents’ roles. More research is needed to expand diversity and develop approaches to joint assent and consent processes that would fairly represent children’s and adolescents’ wishes and interests, towards their long term benefit. (shrink)

Benefit sharing in health research has been the focus of international debates for many years, particularly in developing countries. Whilst increasing attention is being given to frameworks that can guide researchers to determine levels of benefits to participants, there is little empirical research from developing countries on the practical application of these frameworks, including in situations of extreme poverty and vulnerability. In addition, the voices of those who often negotiate and face issues related to benefits in practice - frontline researchers (...) and fieldworkers - are rarely included in these debates. Against this background, this paper reports on experiences of negotiating research participation and benefits as described by fieldworkers, research participants and researchers in two community based studies. (shrink)

There is wide agreement that community engagement is important for many research types and settings, often including interaction with ‘representatives’ of communities. There is relatively little published experience of community engagement in international research settings, with available information focusing on Community Advisory Boards or Groups (CAB/CAGs), or variants of these, where CAB/G members often advise researchers on behalf of the communities they represent. In this paper we describe a network of community members (‘KEMRI Community Representatives’, or ‘KCRs’) linked to a (...) large multi-disciplinary research programme on the Kenyan Coast. Unlike many CAB/Gs, the intention with the KCR network has evolved to be for members to represent the geographical areas in which a diverse range of health studies are conducted through being typical of those communities. We draw on routine reports, self-administered questionnaires and interviews to: 1) document how typical KCR members are of the local communities in terms of basic characteristics, and 2) explore KCR's perceptions of their roles, and of the benefits and challenges of undertaking these roles. We conclude that this evolving network is a potentially valuable way of strengthening interactions between a research institution and a local geographic community, through contributing to meeting intrinsic ethical values such as showing respect, and instrumental values such as improving consent processes. However, there are numerous challenges involved. Other ways of interacting with members of local communities, including community leaders, and the most vulnerable groups least likely to be vocal in representative groups, have always been, and remain, essential. (shrink)

Controlled human malaria infection (CHMI) studies involve the deliberate infection of healthy volunteers with malaria parasites under controlled conditions to study immune responses and/or test drug or vaccine efficacy. An empirical ethics study was embedded in a CHMI study at a Kenyan research programme to explore stakeholders’ perceptions and experiences of deliberate infection and moral implications of these. Data for this qualitative study were collected through focus group discussions, in‐depth interviews and non‐participant observation. Sixty‐nine participants were involved, including CHMI study (...) volunteers, community representatives and research staff. Data were managed using QSR Nvivo 10 and analysed using an inductive‐deductive approach, guided by ethics literature. CHMI volunteers had reasonable understanding of the study procedures. Decisions to join were influenced by study incentives, trust in the research institution, their assessment of associated burdens and motivation to support malaria vaccine development. However, deliberate malaria infection was a highly unusual research strategy for volunteers, community representatives and some study staff. Volunteers’ experiences of physical, emotional and social burdens or harms were often greater than anticipated initially, and fluctuated over time, related to specific procedures and events. Although unlikely to deter volunteers' participation in similar studies in furture, we argue that the dissonance between level of understanding of the burdens involved and actual experiences are morally relevant in relation to community engagement, informed consent processes, and ongoing support for volunteers and research staff. We further argue that ethics oversight of CHMI studies should take account of these issues in deciding whether consent, engagement and the balance of benefits and harms are reasonable in a given context. (shrink)

(2013). The “Difficult Patient” Conundrum in Sickle Cell Disease in Kenya: Complex Sociopolitical Problems Need Wide Multidimensional Solutions. The American Journal of Bioethics: Vol. 13, No. 4, pp. 20-22. doi: 10.1080/15265161.2013.767960.

The American Journal of Bioethics, Volume 11, Issue 8, Page 31-33, August 2011.

Human Infection Studies have emerged as an important research approach with the potential to fast track the global development of vaccines and treatments for infectious diseases, including in low resource settings. Given the high level of burdens involved in many HIS, particularly prolonged residency and biological sampling requirements, it can be challenging to identify levels of study payments that provide adequate compensation but avoid ‘undue’ levels of inducement to participate. Through this embedded ethics study, involving 97 healthy volunteers and other (...) research stakeholders in a malaria HIS programme in Kenya, and using in-depth interviews, focus group discussions and observations during and after a malaria HIS, we give a grounded account of ethical issues emerging in relation to study payments in this setting. While careful community, national, international scientific and ethics review processes meant that risks of serious harm were highly unlikely, the levels of motivation to join HIS seen could raise concerns about study payments being too high. Particular value was placed on the reliability, rather than level, of study payment in this setting, where subsistence livelihoods are common. Study volunteers were generally clear about the study aims at the point of recruitment, and this knowledge was retained over a year later, although most reported experiencing more burdens than anticipated at enrolment. Strict study screening procedures, regular clinical and laboratory monitoring of volunteers, with prompt treatment with antimalarial at predetermined endpoints suggested that the risks of serious harm were highly unlikely. Ethical concerns emerged in relation to volunteers’ attempts to conceal symptoms, hoping to prolong residency periods and increase study payments; and volunteers making decisions that compromised important family relationships and personal values. Our findings support an interpretation that, although study volunteers were keen to join the study to access cash payments, they also paid attention to other features of the study and the general clinical research landscape, including levels of risk associated with study participation. Overall, our analysis shows that the ethical concerns emerging from the study payments can be addressed through practical measures, hinged on reducing burdens and strengthening communication, raising important issues for research policy and planning. (shrink)

International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research practice locally, (...) and contribute to policy more widely, this study aimed to explore the views of local residents in Kilifi County in coastal Kenya on how researchers should manage study-generated information on sickle cell disease and carrier status. (shrink)

Community engagement (CE) is gaining prominence in global health research. A number of ethical goals–spanning the instrumental, intrinsic, and transformative–have been ascribed to CE in global health research. This paper draws attention to an additional transformative value that CE is not typically linked to but that seems very relevant: solidarity. Both are concerned with building relationships and connecting parties that are distant from one another. This paper first argues that furthering solidarity should be recognized as another ethical goal for CE (...) in global health research. It contends that, over time, CE can build the bases of solidaristic relationships—moral imagination, recognition, understanding, empathy—between researchers and community members. Applying concepts from existing accounts of solidarity, the paper develops preliminary ideas about who should be engaged and how to advance solidarity. The proposed approach is compared to current CE practice in global health research. Finally, the paper briefly considers how solidaristic CE could affect how global health research is performed. (shrink)

BackgroundVerbal autopsy is a pragmatic approach for generating cause-of-death data in contexts without well-functioning civil registration and vital statistics systems. It has primarily been conducted in health and demographic surveillance systems (HDSS) in Africa and Asia. Although significant resources have been invested to develop the technical aspects of verbal autopsy, ethical issues have received little attention. We explored the benefits and burdens of verbal autopsy in HDSS settings and identified potential strategies to respond to the ethical issues identified.MethodsThis research was (...) based on a case study approach centred on two contrasting HDSS in Kenya and followed the Mapping-Framing-Shaping Framework for empirical bioethics research. Data were collected through individual interviews, focus group discussions, document reviews and non-participant observations. 115 participants were involved, including 86 community members (HDSS residents and community representatives), and 29 research staff (HDSS managers, researchers, census field workers and verbal autopsy interviewers).ResultsThe use of verbal autopsy data for research and public health was described as the most common potential benefit of verbal autopsy in HDSS. Community members mentioned the potential uses of verbal autopsy data in addressing immediate public health problems for the local population while research staff emphasized the benefits of verbal autopsy to research and the wider public. The most prominent burden associated with the verbal autopsy was emotional distress for verbal autopsy interviewers and respondents. Moral events linked to the interview, such as being unsure of the right thing to do (moral uncertainty) or knowing the right thing to do and being constrained from acting (moral constraint), emerged as key causes of emotional distress for verbal autopsy interviewers.ConclusionsThe collection of cause-of-death data through verbal autopsy in HDSS settings presents important ethical and emotional challenges for verbal autopsy interviewers and respondents. These challenges include emotional distress for respondents and moral distress for interviewers. This empirical ethics study provides detailed accounts of the distress caused by verbal autopsy and highlights ethical tensions between potential population benefits and risks to individuals. It includes recommendations for policy and practice to address emotional and moral distress in verbal autopsy. (shrink)

HIV prevention is a critical health issue in Nigeria; a country that has one of the worst HIV epidemic profiles in the world. With 270,000 new infections in 2012, Nigeria is a prime site for HIV prevention research. One effect of the HIV epidemic has been to revolutionalise ethical norms for the conduct of research: it is now considered unethical to design and implement HIV related studies without community engagement. Unfortunately, there is very little commensurate effort in building the capacity (...) of local persons to engage actively with researchers, and there is no existing platform to facilitate dialogue between researchers and communities engaged in research in Nigeria. In an effort to address this gap, we undertook a series of three community dialogues and two community-researcher interface meetings in Nigeria. This paper aims to give an empirical account of the dialogue from these community engagement processes and provide a resulting critique of the implementation of research ethics practices in Nigeria. It is anticipated that the outputs will: support researchers in designing community-based research protocols; inform ethics committees of key considerations during research protocol reviews from a community perspective; and inform policy makers and research sponsors about issues of primary concern to communities with respect to HIV research. (shrink)

Community engagement is increasingly emphasized in biomedical research, as a right in itself, and to strengthen ethical practice. We draw on interviews and observations to consider the practical and ethical implications of involving Community Health Workers (CHWs) as part of a community engagement strategy for a vaccine trial on the Kenyan Coast. CHWs were initially engaged as an important network to be informed about the trial. However over time, and in response to community advice, they became involved in trial information (...) sharing and identifying potential participants; thereby taking on roles that overlapped with those of employed fieldworkers (FWs). While CHWs involvement was generally perceived as positive and appreciated, there were challenges in their relations with FWs and other community members, partly related to levels and forms of remuneration. Specifically, payment of CHWs was not as high as for FWs and was based on ‘performance’. This extrinsic motivation had the potential to crowd out CHWs intrinsic motivation to perform their pre-existing community roles. CHWs remuneration potentially also contributed to CHWs distorting trial information to encourage community members to participate; and to researchers encouraging CHWs to utilize their social connections and status to increase the numbers of people who attended information giving sessions. Individual consent processes were protected in this trial through final information sharing and consent being conducted by trained clinical staff who were not embedded in study communities. However, our experiences suggest that roles and remuneration of all front line staff and volunteers involved in trials need careful consideration from the outset, and monitoring and discussion over time. (shrink)

Internationally, calls for feedback of findings to be made an ‘ethical imperative’ or mandatory have been met with both strong support and opposition. Challenges include differences in issues by type of study and context, disentangling between aggregate and individual study results, and inadequate empirical evidence on which to draw. In this paper we present data from observations and interviews with key stakeholders involved in feeding back aggregate study findings for two Phase II malaria vaccine trials among children under the age (...) of 5 years old on the Kenyan Coast. In our setting, feeding back of aggregate findings was an appreciated set of activities. The inclusion of individual results was important from the point of view of both participants and researchers, to reassure participants of trial safety, and to ensure that positive results were not over-interpreted and that individual level issues around blinding and control were clarified. Feedback sessions also offered an opportunity to re-evaluate and re-negotiate trial relationships and benefits, with potentially important implications for perceptions of and involvement in follow-up work for the trials and in future research. We found that feedback of findings is a complex but key step in a continuing set of social interactions between community members and research staff (particularly field staff who work at the interface with communities), and among community members themselves; a step which needs careful planning from the outset. We agree with others that individual and aggregate results need to be considered separately, and that for individual results, both the nature and value of the information, and the context, including social relationships, need to be taken into account. (shrink)

The proposed framework by Lynch et al. (2021) for promoting ethical forms of payment in Human Infection Controlled Studies (HICS) in general and SARS-Cov-2 HICS in particular is an important contri...

Volume 20, Issue 8, August 2020, Page W14-W16.

BackgroundThere is general consensus internationally that unfair distribution of the benefits of research is exploitative and should be avoided or reduced. However, what constitutes fair benefits, and the exact nature of the benefits and their mode of provision can be strongly contested. Empirical studies have the potential to contribute viewpoints and experiences to debates and guidelines, but few have been conducted. We conducted a study to support the development of guidelines on benefits and payments for studies conducted by the KEMRI-Wellcome (...) Trust programme in Kilifi, Kenya.MethodsFollowing an initial broad based survey of cash, health services and other items being offered during research by all programme studies (n = 38 studies), interviews were held with research managers (n = 9), and with research staff involved in 8 purposively selected case studies (n = 30 interviewees). Interviews explored how these ‘benefits’ were selected and communicated, experiences with their administration, and recommendations for future guidelines. Data fed into a consultative workshop attended by 48 research staff and health managers, which was facilitated by an external ethicist.FindingsThe most commonly provided benefits were medical care (for example free care, and strengthened quality of care), and lunch or snacks. Most cash given to participants was reimbursement of transport costs (for example to meet appointments or facilitate use of services when unexpectedly sick), but these payments were often described by research participants as benefits. Challenges included: tensions within households and communities resulting from lack of clarity and agreement on who is eligible for benefits; suspicion regarding motivation for their provision; and confusion caused by differences between studies in types and levels of benefits.ConclusionsResearch staff differed in their views on how benefits should be approached. Echoing elements of international benefit sharing and ancillary care debates, some research staff saw research as based on goodwill and partnership, and aimed to avoid costs to participants and a commercial relationship; while others sought to maximise participant benefits given the relative wealth of the institution and the multiple community needs. An emerging middle position was to strengthen collateral or indirect medical benefits to communities through collaborations with the Ministry of Health to support sustainability. (shrink)

Increasing adoption of electronic health records in hospitals provides new opportunities for patient data to support public health advances. Such learning healthcare models have generated ethical debate in high-income countries, including on the role of patient and public consent and engagement. Increasing use of electronic health records in low-middle income countries offers important potential to fast-track healthcare improvements in these settings, where a disproportionate burden of global morbidity occurs. Core ethical issues have been raised around the role and form of (...) information sharing processes for learning healthcare systems, including individual consent and individual and public general notification processes, but little research has focused on this perspective in low-middle income countries. We conducted a qualitative study on the role of information sharing and governance processes for inpatient data re-use, using in-depth interviews with 34 health stakeholders at two public hospitals on the Kenyan coast, including health managers, providers and researchers. Data were collected between March and July 2016 and analysed using a framework approach, with Nvivo 10 software to support data management. Most forms of clinical data re-use were seen as an important public health good. Individual consent and general notification processes were often argued as important, but contingent on interrelated influences of the type of data, use and secondary user. Underlying concerns were linked to issues of patient privacy and autonomy; perceived risks to trust in health systems; and fairness in how data would be used, particularly for non-public sector re-users. Support for engagement often turned on the anticipated outcomes of information-sharing processes, as building or undermining trust in healthcare systems. As reported in high income countries, learning healthcare systems in low-middle counties may generate a core ethical tension between supporting a public good and respecting patient autonomy and privacy, with the maintenance of public trust acting as a core requirement. While more evidence is needed on patient and public perspectives on learning healthcare activities, greater collaboration between public health and research governance systems is likely to support the development of efficient and locally responsive learning healthcare activities in LMICs. (shrink)

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health and (...) Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

I remember my immediate fascination with an edited collection, now twenty years old, Who Comes After the Subject? The title seemed to entirely displace the identity of the subject, the “of-courseness” of its uniquely human definition. Indeed, its provocation did more than destabilise the what and where of the subject, as if we might extend this complexity, albeit in attenuated form, to non-human entities. The more radical implication was a destabilisation of human identity itself—its circumscribed location—together with the progress narrative (...) that made the arrival of language, technology and agential smarts synonymous with human achievement. As contemporary concern about planetary health is galvanized around the unique power of human agency to either ruin or redeem an impassive and defenceless Nature, a “before” that lacks what being a subject affords, this article will linger over the logic that continues to sustain this story. By reworking Derrida’s “originary writing” as “originary humanicity,” a different sense of ecological involvement might be possible. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Narrative Symposium:Living Organ DonationLaura Altobelli, Sherri Bauman, Janice Flynn, Andy Heath, Joseph Jacobs, Tim Joos, Amy K. Lewensten, Donna L. Luebke, Sarah A. McDaniel, Donald Olenick, Laurie E Post, Vicky Young, Blake Adams, Anonymous One, Michael Sauls, Christine Wright, Shannon D. Wyatt, and Cara Yesawich• An Altruistic Living Donor’s Story• Surgery for the Soul• Kidney Donation Story• The Essence of Giving—A Transplant Story• Love—the Risk Worth Taking• My Donation (...) Journey• A Life For A Life: My Gift To My Dad• Lessons Learned: The Realities of Living Organ Donation• Sarah’s List Exchange Experience• Accelerated Living Donation• Liver Donor Nightmare• Adrift After Donation• Getting Our Child Off Dialysis• A Living Donor’s Journey• The Spare Kidney• Living Donors are People Too• The Gift of Life—Walking by Faith• Journey of an Altruistic, Non–designated Living DonorCopyright © 2012 The Johns Hopkins University Press... (shrink)

A key ethical issue arising in data linkage research relates to consent requirements. Patients’ consent preferences in the context of health research have been explored but their consent preferences regarding data linkage specifically have been under-explored. In addition, the views on data linkage are often those of patient groups. As a result, little is known about lay people’s views and their preferences about consent requirements in the context of data linkage. This study explores lay people’s views and justifications regarding the (...) acceptability of conducting data linkage research without obtaining consent. (shrink)

Background: Depression is the largest cause of mental ill health worldwide. Although interventions such as Dance Movement Therapy (DMT) may offer interesting and acceptable treatment options, current clinical guidelines do not include these interventions in their recommendations mainly because of what is perceived as insufficient research evidence. The 2015 Cochrane review on DMT for depression includes only three RCTs leading to inconclusive results. It is therefore, necessary to also look beyond such designs in order to identify and assess the range (...) of current evidence. Methods: We therefore, conducted a systematic review of studies that aimed to explore the effectiveness in the use of DMT with people with depression. This led to a qualitative narrative synthesis followed by a subgroup analysis and a sensitivity analysis. In all meta-analyses a random effects model was used with Standardised Mean Differences (SMD) to accommodate for the heterogeneity of studies and outcome measures. Results: From the 817 studies reviewed, eight studies met our inclusion criteria. 351 people with depression (mild to severe) participated, 192 of whom attended DMT groups while receiving treatment as usual (TAU) and 159 received TAU only. Qualitative findings suggest there was a decrease in depression scores in favour of DMT groups in all studies. Subgroup analysis performed on depression scores before and three months after the completion of DMT groups suggested changes in favour of the DMT groups. When sensitivity analysis was performed, RCTs at high risk of bias were excluded, leaving only studies with adult clients up to the age of 65. In these studies, the highest effect size was found favouring DMT plus TAU for adults with depression, when compared to TAU only. Conclusions: Based on studies with moderate to high quality, we concluded that DMT is an effective intervention in the treatment of depression with adults. Furthermore, by drawing on a wide range of designs with diverse quality, we were able to compile a comprehensive picture of relevant trends. Despite the fact that there remains a paucity of high-quality studies, the results have relevance to both policy-making and clinical practice, and become a platform for further research. (shrink)

There is a growing expectation, or even requirement, for researchers to deposit a variety of research data in data repositories as a condition of funding or publication. This expectation recognizes the enormous benefits of data collected and created for research purposes being made available for secondary uses, as open science gains increasing support. This is particularly so in the context of big data, especially where health data is involved. There are, however, also challenges relating to the collection, storage, and re-use (...) of research data. This paper gives a brief overview of the landscape of data sharing via data repositories and discusses some of the key ethical issues raised by the sharing of health-related research data, including expectations of privacy and confidentiality, the transparency of repository governance structures, access restrictions, as well as data ownership and the fair attribution of credit. To consider these issues and the values that are pertinent, the paper applies the deliberative balancing approach articulated in the Ethics Framework for Big Data in Health and Research to the domain of Openness in Big Data and Data Repositories. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. (shrink)

This paper discusses the role of the Australian Institute of Criminology in monitoring inmate deaths in custody on a national basis. It also provides a descriptive overview of Australian Indigenous and non-Indigenous inmate deaths in custody during the eighteen-year period between 1980 and 1998.In October 1987, the Royal Commission into Aboriginal Deaths in Custody commenced investigating the deaths of Australia's Indigenous people in custody throughout Australia between January 1, 1980 and May 31, 1989. RCIADIC's task was to examine the circumstances (...) of the deaths; the actions taken by authorities; and the underlying causes of Indigenous deaths in custody, including social, cultural, and legal factors. The investigation found that the major factor contributing to the high number of Indigenous deaths in custody was the disproportionately higher rates at which Indigenous people come into contact with the criminal justice system. RCIADIC concluded that the most significant reason for this contact was the severely disadvantaged social, economic, and cultural position of many Indigenous people. (shrink)

Anthropology diffracted : originary humanicity -- Just figures?: forensic clairvoyance, mathematics, and the language question -- Enumerating language : "The unreasonable effectiveness of mathematics" -- Natural convers(at)ions : or, what if culture was really nature all along? -- (Con)founding "the human" : rethinking the incest taboo -- Culpability and the double-cross : Irigaray with Merleau-Ponty.

The COVID-19 pandemic has both exposed and created deep rifts in society. It has thrust us into deep ethical thinking to help justify the difficult decisions many will be called upon to make and to protect from decisions that lack ethical underpinnings. This paper aims to highlight ethical issues in six different areas of life highlighting the enormity of the task we are faced with globally. In the context of COVID-19, we consider health inequity, dilemmas in triage and allocation of (...) scarce resources, ethical issues associated with research, ethical considerations relating to tracing apps, and exit strategies such as immunity passports and COVID-19 vaccines. Finally, we consider environmental issues in light of COVID-19. The paper also offers some ethical reflection on these areas as many parts of the world contemplate the recovery phase. (shrink)

The objective of this article is to show that Hannah Arendt’s understanding of totalitarianism is indebted to the analysis of National Socialism elaborated by Franz Neumann in Behemoth: The Structure and Practice of National Socialism. It is argued that Arendt adopted the central thesis of Neumann according to which Nazi Germany is a ‘non-state’ and that this thesis as well as its presuppositions are discernible in her overall approach, developed in The Origins of Totalitarianism.

Over the last two decades our understanding of the relationship of gender, politics and the state has been transformed almost beyond recognition by the mutual interrogation of feminism and political science. This volume provides an overview of this dynamic and growing field, which reflects both its expanding empirical scope and the accompanying theoretical development and debate. The first three essays focus primarily on conceptual and theoretical issues: the meaning of 'gender'; the state's role in the construction of gender within the (...) public and private sphere; and the political representation of gender differences within liberal democracy. The remaining six provide analyses of more concrete issues of state policy and participation in differeing national political contexts: abortion politics in Ireland; the local politics of prostitution in Britain, the impact on women's political participation of economic change in China, Latin America and political change in Russia, and the gender impact of state programmes of land reform. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Journal of the History of Ideas 63.3 (2002) 425-446 [Access article in PDF] Giving Orders: Theory and Practice in the Fundamental Constitutions of Carolina Vicki Hsueh Indians. Of Edisto Ashapo and Combohe to the South our friends. Of Wando Ituan Sewee and Sehey to the north came to our assistance and were zealous and resolute in it 1000 bowmen In our want supplied us. Q. Spaniards. What we (...) shall doe to the Spaniards if we invade them we brake the peace, if we sit still we loose our reputation with the Indians our friends. Westoes. Inland man eaters. Country. To the northward more sickly, about Ashley River fertile and of a wonderful growth. Tatchequea. A very fruitfull Country 8. days jorney by the North west the Emperor our friend and enemy to the Westoes and to hard for them. Q. Settlem't. 500 people will secure the settlement 1000 perfect it. desires supplys of necessarys till that time Excerpt from Carolina Memoranda in the handwriting of John Locke, Esq., 15 September 1670 Within the last decade, scholars such as James Tully, Barbara Arneil, and Bhikhu Parekh have performed a crucial intervention on modern constitu-tionalism's behalf. 1 Not only has constitutionalism in the modern age been [End Page 425] plagued by assumptions of cultural uniformity and an on-going inability to adjudicate between competing cultural claims, but it has been unable effectively to diagnose those limitations and dilemmas. The root of the problem, James Tully suggests, is ultimately a matter of historical perspective. "[T]he tendency," he writes, "is not to notice the philosophical and ideological debates over the last three hundred years... only the result of these debates is seen—the victorious modern language of constitutional uniformity—and claims for recognition are viewed through its framework as if it were impartial and universal." 2 In response Tully and others have sought to tackle this predicament at its historical root. Identifying modern constitutionalism's colonial origins as a significant part of the problem, their studies address the development of constitutionalism and colonialism as an entwined phenomenon in the early modern period, focusing particularly on the British-American context. In this sense, Locke's Two Treatises of Government stands as an exemplary illustration of the period's entangled colonial and constitutional temperaments. Well-known for its influential articulation of compact and resistance, the Two Treatises, Barbara Arneil argues "were written as a defence of England's colonial policy in the new world against the sceptics in England and the counter-claims of both the aboriginal nations and other European powers in America." 3 Accordingly, present-day constitutionalism continues to bear the weighty legacy of those colonial rationales. "[T]he language of modern constitutionalism," Tully further explains, "which has come to be authoritative was designed to exclude or assimilate cultural diversity and justify uniformity. The design is difficult to see because this 'modern' language has become the customary way of thinking about, reflecting on and envisioning a just constitutional order." Ultimately, Tully submits, citing Wittgenstein, "A picture held us captive. And we could not get outside it, for it lay in our language and language seemed to repeat it to us inexorably." 4This much-needed thickening of constitutionalism's historical context has enriched our awareness of constitutionalism's vexed origins, as it has proffered potent tools for interrogating current cultural adjudication. Yet, a troubling predicament persists. As if caught within the tenacious grip of the language of modern constitutionalism, Tully, Arneil, and Parekh insistently portray seventeenth-century British-American colonialism solely as a straightforward process of appropriation and assimilation without addressing or incorporating the [End Page 426] complex and contingent elements of that history in its emergence. Lacking the various negotiations and accommodations between settler and indigene in ambition and actualization, their portrayals crucially underplay the dynamic relationship between theories of constitutionalism and practices of colonialism—an approach that ultimately serves to reinscribe the narrative of triumphalist progress within their critiques. 5This problematic is the context for my reading of the Fundamental Constitutions of Carolina,1669... (shrink)

In exploring phenomenological literature, it is evident that the term ‘phenomenology’ holds rather different meanings depending upon the context. Phenomenology has been described as both a philosophical movement and an approach to human science research. The phenomenology of Husserl, Heidegger, Gadamer, and Merleau-Ponty was philosophical in nature and not intended to provide rules or procedures for conducting research. The Canadian social scientist, van Manen, however, introduced specific guidelines for conducting human science research, which is rooted in hermeneutic phenomenology and this (...) particular method has been employed in professional disciplines such as education, nursing, clinical psychology, and law. The purpose of this paper is to explore the difference between the phenomenological method as described by van Manen and that of other philosophers such as Husserl, Heidegger, Gadamer, and Merleau-Ponty. In so doing, the author aims to address the blurred boundaries of phenomenology as a research method and as a philosophical movement and highlight the influence of these blurred boundaries on nursing knowledge development. (shrink)

This paper discusses the role of the Australian Institute of Criminology in monitoring inmate deaths in custody on a national basis. It also provides a descriptive overview of Australian Indigenous and non-Indigenous inmate deaths in custody during the eighteen-year period between 1980 and 1998.In October 1987, the Royal Commission into Aboriginal Deaths in Custody commenced investigating the deaths of Australia's Indigenous people in custody throughout Australia between January 1, 1980 and May 31, 1989. RCIADIC's task was to examine the circumstances (...) of the deaths; the actions taken by authorities; and the underlying causes of Indigenous deaths in custody, including social, cultural, and legal factors. The investigation found that the major factor contributing to the high number of Indigenous deaths in custody was the disproportionately higher rates at which Indigenous people come into contact with the criminal justice system. RCIADIC concluded that the most significant reason for this contact was the severely disadvantaged social, economic, and cultural position of many Indigenous people. (shrink)

With contributions from leading scholars in constitutional law, this volume examines how carefully designed and limited doctrines of proportionality can improve judicial decision-making, how it is applied in different jurisdictions, its role on constitutionalism outside the courts, and whether the principle of proportionality actually advances or detracts from democracy. Contributions from some of the seminal thinkers on the development of scholarship on proportionality extend their prior work and engage in an important dialogue on the topic. Some offer substantial critiques, others (...) defend the doctrine and offer important clarifications and extensions of their prior work. Throughout, the authors engage not only with case law from around the world but also with existing scholarly treatments of the subject. Mathematical treatments are avoided, making the book accessible to readers from both 'soft' and hard' social science backgrounds. (shrink)

This comprehensively updated and expanded revision of the successful second edition continues to provide detailed coverage of the ever-growing range of research topics in vision. In Part I, the treatment of visual physiology has been extensively revised with an updated account of retinal processing, a new section explaining the principles of spatial and temporal filtering which underlie discussions in later chapters, and an up-to-date account of the primate visual pathway. Part II contains four largely new chapters which cover recent psychophysical (...) evidence and computational model of early vision: edge detection, perceptual grouping, depth perception, and motion perception. The models discussed are extensively integrated with physiological evidence. All other chapters in Parts II, III, and IV have also been thoroughly updated. (shrink)

The COVID-19 pandemic has had a significant impact globally. Most affected, however, are those individuals and groups routinely disadvantaged by the social injustice created by the misdistribution of power, money, and resources. Simple measures that prevent the spread of COVID-19, such as frequent hand washing and social distancing, are unavailable to millions of people in the wealthiest of nations and in the poorest of nations. Disadvantaged groups are impacted more directly and in disproportionately higher numbers due to existing poor health, (...) and the disruption of services central to securing an income and an education will have lasting consequences for their futures. The unintended effect of exclusionary government policies is that privileged citizens and healthcare systems are also at greater risk. This paper seeks to highlight the impact of COVID-19 on those already suffering health inequities through consideration of some of the social determinants of health on groups in affluent and poorer nations. It also highlights some of the factors that may assist in tackling health inequities as we emerge from this pandemic. (shrink)

This paper examines the connection between politics and public space at a time when photography and the new media have put the classical distinction between the public and the private into question. My focus is on the body which, according to Hannah Arendt and the classical philosophers, is the most private thing there is. Drawing on the work of Weimar photojournalist Erich Salomon – who was among the first to infiltrate the spaces where political talks were held and decisions taken (...) – I argue for an understanding of the body as an aesthetic object and a site where public and private criss-cross and intersect. The body in photography leads me to the final part of the paper where I trace the figuring of the body in the texts of Plato, Aristotle and the Stoics, and argue that far from being a recent phenomenon, the aestheticisation of politics is already at work in the tradition that celebrates deliberation and the public use of reason. (shrink)