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1.
    
“Vulnerability” is a key concept for research ethics and public health ethics. This term can be discussed from either a conceptual or a practical perspective. I previously proposed the metaphor of layers to understand how this concept functions from the conceptual perspective in human research. In this paper I will clarify how my analysis includes other definitions of vulnerability. Then, I will take the practical‐ethical perspective, rejecting the usefulness of taxonomies to analyze vulnerabilities. My proposal specifies two steps and provides a procedural guide to help rank layers. I introduce the notion of cascade vulnerability and outline the dispositional nature of layers of vulnerability to underscore the importance of identifying their stimulus condition. In addition, I identify three kinds of obligations and some strategies to implement them. This strategy outlines the normative force of harmful layers of vulnerability. It offers concrete guidance. It contributes substantial content to the practical sphere but it does not simplify or idealize research subjects, research context or public health challenges.  相似文献   

2.
"Critical Design Ethnography: Designing for Change" is reviewed in terms of action research under five dimensions: knowledge in practice, participation and democracy, many ways of knowing, emergence, and worthwhile purposes. Particular attention is paid to the tensions between the design agenda and the empowerment agenda.  相似文献   

3.
Critical Design Ethnography: Designing for Change   总被引:4,自引:0,他引:4  
This article describes critical design ethnography, an ethnographic process involving participatory design work aimed at transforming a local context while producing an instructional design that can be used in multiple contexts. Here, we reflect on the opportunities and challenges that emerged as we built local critiques then reified them into a designed artifact that has been implemented in classrooms all over the world.  相似文献   

4.
    
This paper contends that a research ethics approach to the regulation of health data research is unhelpful in the era of population‐level research and big data because it results in a primary focus on consent (meta‐, broad, dynamic and/or specific consent). Two recent guidelines – the 2016 WMA Declaration of Taipei on ethical considerations regarding health databases and biobanks and the revised CIOMS International ethical guidelines for health‐related research involving humans – both focus on the growing reliance on health data for research. But as research ethics documents, they remain (to varying degrees) focused on consent and individual control of data use. Many current and future uses of health data make individual consent impractical, if not impossible. Many of the risks of secondary data use apply to communities and stakeholders rather than individual data subjects. Shifting from a research ethics perspective to a public health lens brings a different set of issues into view: how are the benefits and burdens of data use distributed, how can data research empower communities, who has legitimate decision‐making capacity? I propose that a public health ethics framework – based on public benefit, proportionality, equity, trust and accountability – provides more appropriate tools for assessing the ethical uses of health data. The main advantage of a public health approach for data research is that it is more likely to foster debate about power, justice and equity and to highlight the complexity of deciding when data use is in the public interest.  相似文献   

5.
    
In this article, I ask whether a principle analogous to the principle of clinical equipoise should govern the design and conduct of RCTs evaluating the effectiveness of policy interventions. I answer this question affirmatively, and introduce and defend the principle of policy equipoise. According to this principle, all arms of a policy RCT must be, at minimum, in a state of equipoise with the best proven policy that is also morally and practically attainable and sustainable. For all arms of a policy RCT, policy experts must either (1) reasonably disagree about whether the trial arms are more effective than this policy, or (2) know that they are.  相似文献   

6.
I argue that W.E.B. Du Bois’ expulsion from academic sociology at the beginning of the twentieth century was not only animated by the gatekeepers’ desire to maintain academe as a whites-only domain. It also constituted an active effort to defend Social Darwinist dogma, which dominated (white) social science at that time, from the formidable challenge of a resourceful and scientifically superior perspective. The successful exclusion of Du Bois (and his growing legion of colleagues) allowed sociology to drift into functionalist dogma, with its immutable hierarchy and denial of sociology’s role in facilitating social change. The exclusion of Du Boisean analysis, which placed human agency – and especially subaltern groups – at the centre of social change – rendered sociological analysis irrelevant to addressing social problems and social justice, until the Civil Rights Movement in America broke down the walls of the sociological ghetto, allowing it to access the rich Du Boisean perspective.  相似文献   

7.
    
Alan Wertheimer 《Bioethics》2015,29(5):301-308
It is widely assumed that it is ethical to conduct research with human subjects only if the research has social value. There are two standard arguments for this view. The allocation argument claims that public funds should not be devoted to research that lacks social value. The exploitation avoidance argument claims that subjects are exploited if research has no social value. The primary purpose of this article is to argue that these arguments do not succeed. The allocation argument has little relevance to commercial research. Social value is not necessary to avoid exploitation if subjects benefit from participation. Although the standard arguments for a social value requirement do not succeed, that view might be justified in a different way. It might be justified by appeal to the importance of social trust or the integrity of physician investigators. It is possible but doubtful that these arguments succeed.  相似文献   

8.
    
Derrick Aarons 《Bioethics》2019,33(3):343-346
Guideline 20 of the updated International Ethics Guidelines for Health‐related Research Involving Humans (2016) by the Council for International Organizations of Medical Sciences (CIOMS) provides guidance on research in disasters and disease outbreaks against the background of the need to generate knowledge quickly, overcome practical impediments to implementing such research, and the need to maintain public trust. The guideline recommends that research ethics committees could pre‐screen study protocols to expedite ethical reviews in a situation of crisis, that pre‐arrangements be made regarding data sharing and biomedical sample sharing, and that sponsors and research ethics committees seek to minimize risk to researchers conducting research during a disaster. This paper critiques these recommendations against the background of the findings of a survey of public health officials and chairs of research ethics committees in the Caribbean during 2016, which sought to determine the best template for the expeditious ethical review of research proposals in emergency and epidemic situations in the Caribbean, and whose findings can serve as a model for other low‐ and middle‐income countries.  相似文献   

9.
    
Existing ethical frameworks for public health provide insufficient guidance on how to evaluate the risks of public health programs that compromise the best clinical interests of present patients for the benefit of others. Given the relevant similarity of such programs to clinical research, we suggest that insights from the long‐standing debate about acceptable risk in clinical research can helpfully inform and guide the evaluation of risks posed by public health programs that compromise patients’ best clinical interests. We discuss how lessons learned regarding the ethics of risk in one context can be fruitfully transferred to the other, using the example of a so‐called ‘rational antibiotic use’ guideline that limits antimicrobial prescribing in order to curb antimicrobial resistance.  相似文献   

10.
    
Recently, training programs in research ethics have been established to enhance individual and institutional capacity in research ethics in the developing world. However, commentators have expressed concern that the efforts of these training programs have placed ‘too great an emphasis on guidelines and research ethics review’, which will have limited effect on ensuring ethical conduct in research. What is needed instead is a culture of ethical conduct supported by national and institutional commitment to ethical practices that are reinforced by upstream enabling conditions (strong civil society, public accountability, and trust in basic transactional processes), which are in turn influenced by developmental conditions (basic freedoms of political freedoms, economic facilities, social opportunities, transparency guarantees, and protective security). Examining this more inclusive understanding of the determinants of ethical conduct enhances at once both an appreciation of the limitations of current efforts of training programs in research ethics and an understanding of what additional training elements are needed to enable trainees to facilitate national and institutional policy changes that enhance research practices. We apply this developmental model to a training program focused in Egypt to describe examples of such additional training activities.  相似文献   

11.
    
There are few sociology texts that acquire truly seminal status. This brief paper, however, reflects on one of the most celebrated and often cited works in British urban sociology. It seeks to explain: (1) the book's initial impact on debates and research in the field of ‘race and ethnic relations’; (2) the key controversies sparked by its theoretical positioning; and (3) why, and in what ways, it remains of relevance almost half a century after it was written. It concludes that there are two reasons for its continued appeal and significance. First, it placed housing firmly at the centre of debates about the position of Britain's migrant communities; second, it illustrates the potential of sociological research. At a time when controversies rage about ‘impact’, here is a work that not only contributed to our theoretical understanding of contemporary society, but also illustrated the value of ‘public sociology’ by engaging with the polity to bring about social change.  相似文献   

12.
    
The ‘socially valuable knowledge’ (SVK) principle has been widely acknowledged as one of the most important guiding principles for biomedical research involving human subjects. The principle states that the potential of producing socially valuable knowledge is a necessary requirement, although not sufficient, for the ethical conduct of research projects. This is due to the assumption that the social value of knowledge avoids exploitation of research subjects and justifies the use of health resources. However, more recently, several authors have started interrogating the validity of SVK in research and offered various lines of argument against the SVK principle as a necessary constraint to research. In this article, I will reconstruct the main arguments of this discussion between defenders and debunkers of the SVK principle and offer a third way to consider the social value of knowledge in research studies. I will argue that the social value of knowledge can be supported by an independent justification. This justification of the SVK principle addresses the rationality and common interest of researchers. Thus, I will introduce the SVK principle as a safeguarding principle for public trust based on a conceptual framework by Alex John London. My approach justifies keeping the principle as a precautionary and rational requirement for human health research that all rational stakeholders can agree upon.  相似文献   

13.
The present article identifies how social determinants of health raise two categories of philosophical problems that also fall within the smaller domain of ethics; one set pertains to the philosophy of epidemiology, and the second set pertains to the philosophy of health and social justice. After reviewing these two categories of ethical concerns, the limited conclusion made is that identifying and responding to social determinants of health requires inter-disciplinary reasoning across epidemiology and philosophy. For the reasoning used in epidemiology to be sound, for its scope and (moral) purpose as a science to be clarified as well as for social justice theory to be relevant and coherent, epidemiology and philosophy need to forge a meaningful exchange of ideas that happens in both directions.  相似文献   

14.
The history of the way schizophrenia has been conceptualized in American psychiatry has led us to be hesitant to explore the role of social causation in schizophrenia. But there is now good evidence for social impact on the course, outcome, and even origin of schizophrenia, most notably in the better prognosis for schizophrenia in developing countries and in the higher rates of schizophrenia for dark-skinned immigrants to England and the Netherlands. This article proposes that “social defeat” may be one of the social factors that may impact illness experience and uses original ethnographic research to argue that social defeat is a common feature of the social context in which many people diagnosed with schizophrenia in America live today.  相似文献   

15.
This is a report on the British Sociological Association Race and Ethnicity Study Group Conference ‘Mapping the Field: Contemporary Theories of Race, Racism and Ethnicity’, which took place at Newman University on Friday 31 January 2014.  相似文献   

16.
    
BRIDGET PRATT  BEBE LOFF 《Bioethics》2013,27(4):208-214
Health research has been identified as a vehicle for advancing global justice in health. However, in bioethics, issues of global justice are mainly discussed within an ongoing debate on the conditions under which international clinical research is permissible. As a result, current ethical guidance predominantly links one type of international research (biomedical) to advancing one aspect of health equity (access to new treatments). International guidelines largely fail to connect international research to promoting broader aspects of health equity – namely, healthier social environments and stronger health systems. Bioethical frameworks such as the human development approach do consider how international clinical research is connected to the social determinants of health but, again, do so to address the question of when international clinical research is permissible. It is suggested that the narrow focus of this debate is shaped by high‐income countries' economic strategies. The article further argues that the debate's focus obscures a stronger imperative to consider how other types of international research might advance justice in global health. Bioethics should consider the need for non‐clinical health research and its contribution to advancing global justice.  相似文献   

17.
    
ABSTRACT

In this Rejoinder we seek to address the key issues raised by the four commentaries on our edited book. We focus on the question of the shifting boundaries of the field of race and ethnic studies, the absences and gaps in what is covered, the limits of the post-racial, and the whitening of sociology. In conclusion, we suggest some alternative ways in which we would seek to address them.  相似文献   

18.
Stages of the evolvement and development of the major directions of molecular biology in the 1950–1980’s and its prehistory bracketing the 1920–1940’s are considered against the backgrounds of the history of the Soviet science. Short outlines of the lives and activities of the leading scientists who shaped the directions of and provided for success in studying supramolecular cell structures and molecular mechanisms of processes on a cellular level. This essay, which is far from exhaustive in describing the problems that the Soviet scientists have been dealing with, does not cover the studies of the last decade, nor does it evaluate the contributions of the living molecular biologists.  相似文献   

19.
Since the early 1990s, the term “genetic discrimination” has been used to designate adverse treatment on the grounds of genetic makeup. However, the full spectrum of possible disadvantage associated with genetic information has not been addressed by either the international scientific debate or statutory arrangements on genetic discrimination. Informed by legal contexts, they almost all focus on one specific group: the “asymptomatic ill.” On the basis of the sociological study, “Genetic Discrimination in Germany,” this article proposes to revise the terms of the debate and discusses some limitations of the concept. Drawing on the experiences reported by affected individuals, it advocates a more expansive social understanding which does not require that a person has to be healthy to be at risk of genetic discrimination.  相似文献   

20.
When reading ethnographic literature on nature conservation, one may wonder: where has nature gone? Social anthropologists have written nuanced ethnographies of how the environmental projects of governments and transnational NGOs encounter, dispossess, clash culturally with, and try to govern native people across the world. Yet, these diverse ethnographies often say little about what motivates those encounters firstly: local and global nature, especially wildlife, plants, and the planet’s ecological crisis. Thus, this paper seeks ways how ethnographic writing on conservation practice could better reflect that the planet’s many self-willed, struggling, and valued non-humans, too, enter conservation’s encounters. To find paths toward such a ‘wild-ing’ of ethnography, the paper locates and reviews disparate materials from across the social-anthropological literature on biodiversity conservation. The review is structured through three questions: How does and could the ethnography of conservation represent nature’s value? How can it show that animals, plants, and other nature make and meet worlds? How can it incorporate natural science data about non-human worlds and ecological crisis? Altogether, we understand nature conservation clearer through the interdisciplinary and more-than-human ethnography of world-making encounters. Such wilder ethnography may also better connect people’s suffering and nature’s vanishing – as problems both for anthropology and conservation science.  相似文献   

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