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)

BackgroundDespite the rapid global growth of biobanking over the last few decades, and their potential for the advancement of health research, considerations specific to the sharing of benefits that accrue from biobanks have received little attention. Questions such as the types and range of benefits that can arise in biobanking, who should be entitled to those benefits, when they should be provided, by whom and in what form remain mostly unanswered. We conducted a scoping review to describe benefit sharing considerations (...) and practices in biobanking in order to inform current and future policy and practice. MethodsDrawing on the Arksey and O’Malley framework, we conducted a scoping review of the literature in three online databases (PubMed, Cochrane library, and Google Scholar). We extracted and charted data to capture general characteristics, definitions and examples of benefits and benefit sharing, justification for benefit sharing, challenges in benefit sharing, governance mechanisms as well as proposed benefit sharing mechanisms.Results29 articles published between 1999 and 2020 met the inclusion criteria for the study. The articles included 5 empirical and 24 non-empirical studies. Only 12 articles discussed benefit sharing as a stand-alone subject, while the remaining 17 integrated a discussion of benefits as one issue amongst others. Major benefit sharing challenges in biobanking were found to be those associated with uncertainties around the future use of samples and in resultant benefits.ConclusionMost of the benefit sharing definitions and approaches currently in use for biobanking are similar to those used in health research. These approaches may not recognise the distinct features of biobanking, specifically relating to uncertainties associated with the sharing and re-use of samples. We therefore support approaches that allow decisions about benefit sharing to be made progressively once it is apparent who samples are to be shared with, the intended purpose and expected benefits. We also highlight gaps in key areas informing benefit sharing in biobanking and draw attention to the need for further empirical research. (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)

Fieldworkers (FWs) are community members employed by research teams to support access to participants, address language barriers, and advise on culturally appropriate research conduct. The critical role that FWs play in studies, and the range of practical and ethical dilemmas associated with their involvement, is increasingly recognised. In this paper, we draw on qualitative observation and interview data collected alongside a six month basic science study which involved a team of FWs regularly visiting 47 participating households in their homes. The (...) qualitative study documented how relationships between field workers and research participants were initiated, developed and evolved over the course of the study, the shifting dilemmas FWs faced and how they handled them. Even in this one case study, we see how the complex and evolving relationships between fieldworkers and study participants had important implications for consent processes, access to benefits and mutual understanding and trust. While the precise issues that FWs face are likely to depend on the type of research and the context in which that research is being conducted, we argue that appropriate support for field workers is a key requirement to strengthen ethical research practice and for the long term sustainability of research programmes. (shrink)

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)

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

A close relationship between masculinity, alcoholism, widowhood and gendered poverty is evident in contemporary African society. Alcohol consumption among young men begins at an increasingly early age due to availability of low-priced alcohol presented in different varieties. Young, beautiful and sexy girls are used to advertise alcohol. Many young men are addicted to alcohol and totally unable to be free from alcohol addiction. This sad state coupled with the impact of globalisation on the economies of many African countries has left (...) many men jobless. Consequently, many households are headed by women in a patriarchal context where men are supposed to be the heads of the family. Through an Afro-feminisation of Mother Earth lens, this article re-read Proverbs 31 in dialogue with Acts 9:36–43, to show the role of women in the socio-economic sustainability of the family, society and in enhancing gender equity.Contribution: This article re-read Proverbs 31 in dialogue with Acts 9:36–41 as resources for enhancing gender equity. An Afro-feminisation of Mother Earth for sustainable development was presented in ways that open up possibilities for the life of the Garden of Eden in Genesis 1:28 to flourish. (shrink)

The rate at which women and girls have been ‘butchered’ in Africa before and during the COVID-19 pandemic suggests that violence against women in patriarchal settings is more tolerable. According to Exodus 21:12, Leviticus 24:17, Deuteronomy 12:312, 2 Kings 17:31 and Isaiah 66:3, murder and human sacrifice are an abomination and defile the land. Unfortunately, it is heartbreaking to note how the murder of women finds justification, as shown in Judges 11:31–40. Ironically, in Genesis 22:13, the sacrifice of Isaac is (...) prevented through the provision of a sacrificial lamb. In this conversational platform, an African women’s hermeneutical lens to Judges 11:31–40 enables one to reimagine female bodies and motherhood as a theological phenomenon. It is proposed that ‘Sharon’s blood’ presents murdered women as Mother Earth’s sacrificial lambs of Africa, whose lives do not go unnoticed by God. Reimagining female bodies and motherhood as a theological phenomenon arguably enables the voices of murdered women to cry for justice from beyond the grave. If ‘the Sharons’ and their unborn babies do not receive justice, the ground continues to be defiled by human blood and remains ‘cursed’ (Mi 6:15). We will plant but not harvest; hence, there is a direct relationship between female bodies, motherhood and Mother Earth. One therefore asks: can scholarly conversational platforms enable murdered women of African descent to cry for justice from beyond the grave, allowing for life to flourish ‘again’? Contribution: This article contributed new knowledge to feminist studies by presenting murdered female victims of gender-based violence (GBV) as the sacrificial lambs of Mother Africa, whose innocent blood continues to cry for justice from beyond the grave. From an African hermeneutical lens, this research article reimagined female bodies and motherhood as a theological phenomenon in order to arguably enable the voices of murdered women to cry for justice from beyond the grave. (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)

This chapter contains section titled: Literary Revolution and its Meaning The Naturalistic Conception of the Universe and the Experimentalist Method History of Chinese Philosophy and Systematizing the National Heritage Political Philosophy and Liberalism Hu Shi as an Enlightenment Philosopher.

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 COVID-19 pandemic has had a profound psychological and behavioral impact on people around the world. Consumer purchase behaviors have thus changed greatly, and consumer services companies need to adjust their business models to adapt to this change. From the perspective of consumer psychology, this paper explores the impact of consumer purchase behavior changes over the course of the pandemic on the business model design of consumer services companies using a representative survey of 1,742 individuals. Our results show that changes (...) in consumer purchase behavior have a significant impact on the design of consumer services firms’ business models. Specifically, changes in consumers’ purchase object, motive, and timeframe are more likely to spark a novelty-centered business model design, whereas changes in purchase method tend to inspire an efficiency-centered one. Our findings provide a theoretical reference for consumer services companies in designing business models when faced with unexpected crises. (shrink)

I first present a brief interpretation of Sosa’s virtue epistemology by showing how it is arguably better than Goldman’s process reliabilism, why Sosa distinguishes between animal knowledge and reflective knowledge, and how Sosa’s recent account of knowing full well can deal with pragmatic encroachment. Then, I raise two worries about Sosa’s account: (a) Sosa’s claim that one might have animal knowledge without knowing reflectively or knowing full well implies that one’s true belief might manifest both competence and luck, which seems (...) to pose a challenge to Sosa’s solution to the Gettier problem; (b) intellectual virtue or competence does not seem to be a necessary condition for knowledge: there are cases where one knows without possessing the relevant intellectual virtue or competence. Finally, I suggest a responsibilist account of knowledge and show how it can not only handle the cases that pose a problem for Sosa’s account but also explain our intuitions about different grades of knowledge. (shrink)

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)

On December 3 last year, Comrade Zhao Fusan of the Research Institute of Religion of the Chinese Academy of Social Sciences wrote a letter to Comrade Hu Qiaomu outlining his personal reflections on the Party Center's Document 19 [1982].

The debate over the existence of a “public sphere” in China’s Late Qing/Early Republican era began nearly three decades ago, but it has yet to generate a special socio-cultural review on the “Confucian social imaginary” of the Chinese people. The article builds on existing “economic-political approach” and “idea-communication approach” to argue decisive factors hindering the development of a Habermasian “public sphere.” These includes (1) people’s traditional-collectivist lifestyle, (2) lack of understanding of “universal equality,” (3) conservative self-positioning during social transition, (4) (...) regionalist attitude toward outsiders, (5) lack of access to Enlightenment ideas, (6) disregard for parliamentary systems, and (7) ignorance of the rule of law. (shrink)

Science, the proud son of the era and the crystallization of man's wisdom, is inlaid in the crown of our times like a lustrous and brilliant pearl. Social science discloses to mankind the general law governing the development of society and leads it in marching forward to the higher stages of social system - socialist society and communist society. Natural science creates for mankind tremendous productive forces like miracles, enabling the human race to live a life in fairyland. Who is (...) there who does not praise the power of science and refuses to admit that science is the great force pushing history forward? Who is there that dares openly to set up forbidden zones in science, thus serving as an executioner to strangle science? In our times, people who dare openly to do this, perhaps, are increasingly few. However, this does not mean that science can completely extricate itself from disaster. Science has to pay dearly for every step of exploration and has to undergo a stern struggle for it. Science is an undertaking that is most creative and filled with the spirit of innovation. It openly declares that it will wage an irreconcilable struggle against all the old stuff which is reactionary, dark, ignorant and superstitious. Because of this, it is bound to suffer bans and buffets from the reactionary forces. Science has no forbidden zone! This is a call of reason; but there are forbidden zones in science, and that is what we see in the picture of history and reality. What are the forbidden zones? And how should we destroy the forbidden zones and set science free? For many years Lin Biao and the "gang of four" brought terrible disasters to science. In consequence, the aforementioned question is sharply raised before us, requiring us to deal with it strictly and try to resolve it correctly. (shrink)

Machine learning algorithms bring out an under-appreciated puzzle of discrimination, namely figuring out when a decision made on the basis of a factor correlated with race is a decision made on the basis of race. I argue that prevailing approaches, which are based on identifying and then distinguishing among causal effects of race, in their metaphysical timidity, fail to get off the ground. I suggest, instead, that adopting a constructivist theory of race answers this puzzle in a principled manner. On (...) what I call a “thick constructivist” account of race, to be raced is to be socially positioned in the way indicated by a certain set of statistical regularities on the basis of particular phenotypical traits. A thick constructivist sees that acting on the basis of correlations that constitute race qua social position just is acting on the basis of race, because races just are social positions that subject their member individuals to a particular matrix of social relations that define the raced position. This conclusion has considerable ramifications for our understanding of discrimination, algorithms and beyond. (shrink)

En este mundo no existen dos culturas iguales, la traducción es una actividad de comunicación intercultural. En la década de los noventa, Suan Bussnett propuso “la gira de la cultura”, y enfatizó que la traducción no se debe aislar de la cultura. Como un importante elemento cultural 妾 (Qiè) es llevada a la novela en Sueño en el Pabellón Rojo. Desde la perspectiva de “traducción cultural”, se pone enfoque en cómo se puede traducir el significado y también transmitir las informaciones (...) culturales de 妾 (Qiè)). (shrink)