Online research in philosophy

The discussion about relations between research and design has a number of strands, and presumably motivations. Putting aside the question whether or not design or “creative endeavour” should be counted as research, for reasons to do with institutional recognition or reward, the question remains how, if at all, is design research? This question is unlikely to have attracted much interest but for matters external to Architecture within the modern university. But Architecture as a discipline now needs to (...) understand research much better than in the past when ‘research’ was whatever went on in building science, history or people/environment studies. In this paper, I begin with some common assumptions about design, considered in relation to research, and suggest how the former can constitute or be a mode of the latter. Central to this consideration is an understanding of research as the production of publicly available knowledge. (shrink)

Climate engineering (CE), the intentional modification of the climate in order to reduce the effects of increasing greenhouse gas concentrations, is sometimes touted as a potential response to climate change. Increasing interest in the topic has led to proposals for empirical tests of hypothesized CE techniques, which raise serious ethical concerns. We propose three ethical guidelines for CE researchers, derived from the ethics literature on research with human and animal subjects, applicable in the event that CE research progresses (...) beyond computer modeling. The Principle of Respect requires that the scientific community secure the global public's consent, voiced through their governmental representatives, before beginning any empirical research. The Principle of Beneficence and Justice requires that researchers strive for a favorable risk–benefit ratio and a fair distribution of risks and anticipated benefits, all while protecting the basic rights of affected individuals. Finally, the Minimization Principle requires that researchers minimize the extent and intensity of each experiment by ensuring that no experiments last longer, cover a greater geographical extent, or have a greater impact on the climate, ecosystem, or human welfare than is necessary to test the specific hypotheses in question. Field experiments that might affect humans or ecosystems in significant ways should not proceed until a full discussion of the ethics of CE research occurs and appropriate institutions for regulating such experiments are established. (shrink)

The context of international health research involving human subjects, and this should appear obvious, is the human community. As such, basic questions of how human beings should be treated by other human beings, particularly in situations of unequal power – e.g., in the form of control, choice, or opportunity – lay at the foundations of related ethical discourse when ethics are discussed at all. I trace a narrative that follows upon a recent revision process of international guidelines for biomedical (...) research involving human subjects. I focus in particular upon the issue of a standard of care. In the second section, I draw upon philosophers John Rawls, Claudia Card, and Allen Buchanan to discuss concerns regarding the 'least advantaged members of society' in the context of global inequality. The paper includes reflections upon pedagogy in courses focused upon international health research involving human subjects. (shrink)

In this paper the permissibility of stem cell research on early human embryos is defended. It is argued that, in order to have moral status, an individual must have an interest in its own wellbeing. Sentience is a prerequisite for having an interest in avoiding pain, and personhood is a prerequisite for having an interest in the continuation of one's own existence. Early human embryos are not sentient and therefore they are not recipients of direct moral consideration. Early human (...) embryos do not satisfy the requirements for personhood, but there are arguments to the effect that they should be treated as persons nonetheless. These are the arguments from potentiality, symbolic value and the principle of human dignity. These arguments are challenged in this paper and it is claimed that they offer us no good reason to believe that early human embryos should be treated as persons. (shrink)

A broad critical review of national policies on biomedical research - human, epidemiologic, clinical trials, genetic, reproductive, etc.

Scientific research and ethics -- Ethical theory and decision making -- Data acquisition and management -- Mentoring and professional relationship -- Collaboration in research -- Authorship -- Publication and peer review -- Misconduct in research -- Intellectual property -- Conflicts of interest and scientific objectivity -- The use of animals in research -- The use of human subjects in research -- The use of vulnerable subjects in research -- Genetics, cloning, and stem cell (...) class='Hi'>research -- International research. (shrink)

This book presents a comprehensive guide to interpretative phenomenological analysis (IPA) which is an increasingly popular approach to qualitative inquiry taught to undergraduate and postgraduate students today. The first chapter outlines the theoretical foundations for IPA. It discusses phenomenology, hermeneutics, and idiography and how they have been taken up by IPA. The next four chapters provide detailed, step by step guidelines to conducting IPA research: study design, data collection and interviewing, data analysis, and writing up. In the next section, (...) the authors give extended worked examples from their own studies in health, sexuality, psychological distress, and identity to illustrate the breadth and depth of IPA research. The final section of the book considers how IPA connects with other contemporary qualitative approaches like discourse and narrative analysis and how it addresses issues to do with validity. (shrink)

Some theorists who emphasize the complexity of biological and cognitive systems and who advocate the employment of the tools of dynamical systems theory in explaining them construe complexity and reduction as exclusive alternatives. This paper argues that reduction, an approach to explanation that decomposes complex activities and localizes the components within the complex system, is not only compatible with an emphasis on complexity, but provides the foundation for dynamical analysis. Explanation via decomposition and localization is nonetheless extremely challenging, and an (...) analysis of recent cognitive neuroscience research on memory is used to illustrate what is involved. Memory researchers split between advocating memory systems and advocating memory processes, and I argue that it is the latter approach that provides the critical sort of decomposition and localization for explaining memory. The challenges of linking distinguishable functions with brain processes is illustrated by two examples: competing hypotheses about the contribution of the hippocampus and competing attempts to link areas in frontal cortex with memory processing. (shrink)

This is a comprehensive and practical guide to the ethical issues raised by different kinds of medical research, and is the first such book to be written with the needs of the researcher in mind. Clearly structured and written in a plain and accessible style, the book covers every significant ethical issue likely to be faced by researchers and research ethics committees. The author outlines and clarifies official guidelines, gives practical advice on how to adhere to these, and (...) suggests procedures in areas where official recommendations are vague or absent. This invaluable handbook will help researchers identify and address the ethical issues at an early stage in the design of their studies, to avoid unnecessary delay and to safeguard the wellbeing of patients and healthy volunteers. It will also be extremely useful to members of research ethics committees. (shrink)

Abstract I argue that embryonic stem cell research is fair to the embryo, even on the assumption that the embryo has attained full personhood and an attendant right to life at conception. This is because the only feasible alternatives open to the embryo are to exist briefly in an unconscious state and be killed or to not exist at all. Hence, one is neither depriving the embryo of an enduring life it would otherwise have had nor is one causing (...) the embryo pain. I also argue that a rational agent in a situation relevantly similar to that of the embryo would consent to such research, and I use this insight to ground two justice-based arguments in favor of this research. Content Type Journal Article Category Original Research Pages 1-9 DOI 10.1007/s11673-012-9364-0 Authors Aaron Rizzieri, The Humanities Department (E-202), LaGuardia Community College, 31-10 Thompson Ave, Long Island City, NY 11101, USA Journal Journal of Bioethical Inquiry Online ISSN 1872-4353 Print ISSN 1176-7529. (shrink)

The tension in evidence-based practice and reflective practice -- The relationship between reflection and action research -- An overview of theories of consciousness and unconsciousness -- What do we mean by creativity? -- Using metaphor and symbolism as analysis -- Infinite possibilities of knowing and transformation -- Concluding thoughts; the linkages to action research and critical creativity.

This paper distinguishes two conceptions of representation at work in the philosophical literature. On the first, "contentive" conception (found, for example, in Searle and Fodor), something is a representation, roughly, if it has "propositional content". On the second, "indicative" conception (found, for example, in Dretske), representations must not only have content but also have the function of indicating something about the world. Desire is representational on the first view but not on the second. This paper argues that philosophers and psychologists (...) have sometimes conflated these two conceptions, and it examines the consequences of this conflation for the developmental literature on the child's understanding of mind. Specifically, recent research by Gopnik and Perner on the child's understanding of desire is motivated by an argument that equivocates between the two conceptions of representation. Finally, the paper suggests that an examination of when the child understands the possibility of misrepresentation in art would be helpful in charting the child's understanding of indicative representation. (shrink)

The paper approaches the topic of what a general philosophy of science could mean today from the perspective of a historical epistemology. Consequently, in a first step, the paper looks at the notion of generality in the sciences, and how it evolved over time, on the example of the life sciences. In the second part of the paper, the urgency of a general philosophy of science is located in the history of philosophy of science. Two attempts at the beginning of (...) the twentieth century are particularly highlighted: that of Karl Popper and that of Martin Heidegger. Both of them concentrate, albeit in widely different form, on the phenomenon of research as an open-ended process. This trend is even more pronounced in Gaston Bachelard’s version of a historical epistemology, whose work is taken as a point of reference for a general historical epistemology of research. The paper concludes with a plea to look, with Georges Canguilhem, at the history of the sciences as a laboratory for epistemology. (shrink)

Since its inception as an international requirement to protect patients and healthy volunteers taking part in medical research, informed consent has become the primary consideration in research ethics. Despite the ubiquity of consent, however, scholars have begun to question its adequacy for contemporary biomedical research. This book explores this issue, reviewing the application of consent to genetic research, clinical trials, and research involving vulnerable populations. For example, in genetic research, information obtained from an autonomous (...) research participant may have significant bearing on the interests of family members who have not consented to the study. This casts doubt on the adequacy of consent for such studies. This book also questions the assumptions that informed consent is essential and that it satisfactorily protects the principle of individual autonomy. It reviews recent empirical studies that challenge the possibility of truly informed consent and highlights the extent to which consent is governed by social norms and expectations. It also investigates how consent might be of secondary importance in some circumstances, for example when a research project appears to protect a public or community interest. (shrink)

It has often been argued, by philosophers and more recently by developmental psychologists, that our common-sense conception of the mind should be regarded as a scientific theory. However, those who advance this view rarely say much about what they take a scientific theory to be. In this paper, I look at one specific proposal as to how we should interpret the theory view of folk psychology--namely, by seeing it as having a structure analogous to that of a Lakatosian research (...) program. I argue that although the Lakatosian model may seem promising--particularly to those who are interested in studying the development of children's understanding of the mind--the analogy between Lakatosian research programs and folk psychology cannot be made good because folk psychology does not possess anything analogous to the positive heuristic of a Lakatosian research program. I also argue that Lakatos' account of theories may not be the best one for developmental psychologists to adopt because of the emphasis which Lakatos places on the social embeddedness of scientific theorising. (shrink)

Medicine in the twenty-first century is increasingly reliant on research to guarantee the safety and efficacy of medical interventions. As a result, the need to understand the ethical issues that research generates is becoming essential. This volume introduces the principal areas of concern in research on human subjects, offering a framework for understanding research ethics, and the relationship between ethics and compliance. Research Ethics brings together leading scholars in bioethics and the topics covered include the (...) unique concerns that arise in specific areas of research such as gene therapy and stem cell research. Individual chapters also address the ethical issues that arise when conducting research with specific populations such as infants or adolescents, and the volume looks at important emerging issues in human subjects research, namely financial conflicts of interest and the interpretation of scientific data. (shrink)

Biomedical Research and Beyond: Expanding the Ethics of Inquiry investigates the ethics of biomedical and scientific inquiry, including embryonic research, animal research, genetic enhancement, and fairness in research in the developing world. Core concerns of biomedical and scientific research ethics are then shown also to be key in humanistic areas of inquiry. Biomedical Research and Beyond concludes with a discussion of the virtues that all inquirers, scientific, medical, and humanistic, should possess.

As we approach the end of the twentieth century, the ways in which knowledge--scientific, social, and cultural--is produced are undergoing fundamental changes. In The New Production of Knowledge, a distinguished group of authors analyze these changes as marking the transition from established institutions, disciplines, practices, and policies to a new mode of knowledge production. Identifying such elements as reflexivity, transdisciplinarity, and heterogeneity within this new mode, the authors consider their impact and interplay with the role of knowledge in social relations. (...) While the knowledge produced by research and development in science and technology is accorded central focus, the authors also outline the changing dimensions of social scientific and humanities knowledge and the relations between the production of knowledge and its dissemination through education. Placing science policy and scientific knowledge within the broader context of contemporary society, this book will be essential reading for all those concerned with the changing nature of knowledge, with the social study of science, with educational systems, and with the correlation between research and development and social, economic, and technological development. "Thought-provoking in its identification of issues that are global in scope; for policy makers in higher education, government, or the commercial sector." --Choice "By their insightful identification of the recent social transformation of knowledge production, the authors have been able to assert new imperatives for policy institutions. The lessons of the book are deep." --Alexis Jacquemin, Universite Catholique de Louvain and Advisor, Foreign Studies Unit, European Commission "Should we celebrate the emergence of a 'post-academic' mode of postmodern knowledge production of the post-industrial society of the 21st Century? Or should we turn away from it with increasing fear and loathing as we also uncover its contradictions. A generation of enthusiasts and/or critics will be indebted to the team of authors for exposing so forcefully the intimate connections between all the cognitive, educational, organizational, and commercial changes that are together revolutionizing the sciences, the technologies, and the humanities. This book will surely spark off a vigorous and fruitful debate about the meaning and purpose of knowledge in our culture." --Professor John Ziman, (Wendy, Janey at Ltd. is going to provide affiliation. Contact if you don't hear from her.) "Jointly authored by a team of distinguished scholars spanning a number of disciplines, The New Production of Knowledge maps the changes in the mode of knowledge production and the global impact of such transformations. . . . The authors succeed . . . at sketching out, in very large strokes, the emerging trends in knowledge production and their implications for future society. The macro focus of the book is a welcome change from the micro obsession of most sociologists of science, who have pretty much deconstructed institutions and even scientific knowledge out of existence." --Contemporary Sociology "This book is a timely contribution to current discussion on the breakdown of and need to renegotiate the social contract between science and society that Vannevar Bush and likeminded architects of science policy constructed immediately after World War II. It goes far beyond the usual scattering of fragmentary insights into changing institutional landscapes, cognitive structures, or quality control mechanisms of present day science, and their linkages with society at large. Tapping a wide variety of sources, the authors provide a coherent picture of important new characteristics that, taken altogether, fundamentally challenge our traditional notions of what academic research is all about. This well-founded analysis of the social redistribution of knowledge and its associated power patterns helps articulate what otherwise tends to remain an--albeit widespread--intuition. Unless they adapt to the new situation, universities in the future will find the centers of gravity of knowledge production moving even further beyond their ken. Knowledge of the social and cognitive dynamics of science in research is much needed as a basis of science and technology policymaking. The New Production of Knowledge does a lot to fill this gap. Another unique feature is its discussion of the humanities, which are usually left out in works coming out of the social studies of science." --Aant Elzinga, University od Goteborg. (shrink)

When is clinical research ethical? The difficulty in answering this question lies in the dual nature of research on human subjects, which yields two somewhat conflicting sets of obligations. On the one hand, there is the traditional view of science that includes the idea of an obligation to learn about the world. On the other hand, there is the obligation of care on the part of researchers towards individual participants in the research ...

This discussion paper proposes that a meaningful distinction between science and technoscience can be found at the level of the objects of research. Both notions intermingle in the attitudes, intentions, programs and projects of researchers and research institutions—that is, on the side of the subjects of research. But the difference between science and technoscience becomes more explicit when research results are presented in particular settings and when the objects of research are exhibited for the specific (...) interest they hold. When an experiment is presented as scientific evidence which confirms or disconfirms a hypothesis, this agrees with traditional conceptions of science. When organic molecules are presented for their capacity to serve individually as electric wires that carry surprisingly large currents, this would be a hallmark of technoscience. Accordingly, we propose research on the ontology of research objects. The focus on the character and significance of research objects makes this a specifically philosophical project. (shrink)

This book defends the prospects for a science of society. It argues that behind the diverse methods of the natural sciences lies a common core of scientific rationality that the social sciences can and sometimes do achieve. It also argues that good social science must be in part about large-scale social structures and processes and thus that methodological individualism is misguided. These theses are supported by a detailed discussion of actual social research, including theories of agrarian revolution, organizational ecology, (...) social theories of depression, and supply-demand explanations in economics. Professor Kincaid provides a general picture of explanation and confirmation in the social sciences and discusses the nature of scientific rationality, functional explanation, optimality arguments, meaning and interpretation, the place of microfoundations in social explanation, the status of neo-classical economics, the role of idealizations and non-experimental evidence, and other specific controversies. (shrink)

To determine the knowledge, attitude, and ethical concerns of medical students and graduates with regard to Embryonic Stem Cell (ESC) research. This questionnaire based descriptive study was conducted at the Civil Hospital Karachi (CHK), Pakistan from February to July 2008. A well structured questionnaire was administered to medical students and graduate doctors, which included their demographic profile as well as questions in line with the study objective. Informed consent was taken and full confidentiality was assured to the participants. Data (...) were entered in a Statistical Package for Social Sciences (SPSS version.12) and analyzed. A total of 204 male and 216 female medical students and doctors were administered questionnaires out of which 105 males (51.4%) and 108 females (50%) were aware of the embryonic stem cell research and its ethical implications. Forty percent males and 47% of females were of the opinion that life begins at conception. Forty-six percent males and 39% females were in favor of stem cell research while only 31% males and 28% females supported the ESC research. Less than 1/3 of students supported using frozen embryos for research purposes while more than 2/3 indicated that they were unlikely to support abortion for stem cell research purposes. The majority of the students were in favor of stem cell research with some reservations regarding ESC research. A sizeable number of students withheld their views, reflecting their poor understanding of medical ethics. The result of the study indicates a need for incorporating bioethics into the medical curriculum. (shrink)

The current neurosciences contribute to the construction of gender/sex to a high degree. Moreover, the subject of gender/sex differences in cognitive abilities attracts an immense public interest. At the same time, the entanglement of gender and science has been shown in many theoretical and empirical analyses. Although the body of literature is very extensive and differentiated with regards to the dimensions of ‘neuroscience of gender’ and ‘gender in neuroscience’, the feeding back of these findings into the field of neuroscience remains (...) a desideratum. Especially, the question of how gender knowledge, i.e. insights from feminist theory on gender/sex and from gender and science studies on knowledge production, may be integrated and applied within the neurosciences has been strongly neglected. Presumably due to their epistemic culture and epistemological presuppositions, these critical engagements are conceived as externalist by critical scholars and neuroscientists alike. In this context, the question arises of how substantiated gender knowledge may be accounted for in neuroscientific research practice? The article outlines methodological considerations for a critical research agenda in the cognitive neurosciences. I present thoughts on how insights and expertise from gender and science studies can be taken into account in the neuroscientific practice of knowledge production. Starting from the assumption that changes in neuroscientific research practices are possible, my aim is to point out possibilities of integrating gender knowledge into the neurosciences. (shrink)

Group Rationality in Scientific Research.

It is important to be able to offer an account of which activities count as scientific research, given our current interest in promoting research as a means to benefit humankind and in ethically regulating it. We attempt to offer such an account, arguing that we need to consider both the procedural and functional dimensions of an activity before we can establish whether it is a genuine instance of scientific research. By placing research in a broader schema (...) of activities, the similarities and differences between research activities and other activities become visible. It is also easier to show why some activities that do not count as research can sometimes be confused with research and why some other activities can be regarded only partially as research. Although the concept of research is important to delimit a class of activities which we might be morally obliged to promote, we observe that the class of activities which are regarded as subject to ethical regulation is not exhausted by research activities. We argue that, whether they be research or not, all the activities that are likely to affect the rights and interests of the individuals involved and impact on the rights and interests of other individuals raise ethical issues and might be in need of ethical regulation. (shrink)

Ethics and Educational Research: An Introduction Robert G. Burgess Ethical questions are the subject of interdisciplinary discussions and debates. ...

It is widely agreed that foreign sponsors of research in low- and middle-income countries (LMICs) are morally required to ensure that their research benefits the broader host community. There is no agreement, however, about how much benefit or what type of benefit research sponsors must provide, nor is there agreement about what group of people is entitled to benefit. To settle these questions, it is necessary to examine why research sponsors have an obligation to benefit the (...) broader host community, not only their subjects. Justifying this claim is not straightforward. There are three justifications for an obligation to benefit host communities that each apply to some research, but not to all. Each requires a different amount of benefit, and each requires benefit to be directed toward a different group. If research involves significant net risk to LMIC subjects, research must provide adequate benefit to people in LMICs to avoid an unjustified appeal to subjects’ altruism. If research places significant burdens on public resources, research must provide fair compensation to the community whose public resources are burdened. If research is for profit, research sponsors must contribute adequately to the upkeep of public goods from which they benefit in order to avoid the wrong of free-riding, even if their use of these public goods is not burdensome. (shrink)

On both sides of the debate on the use of embryos in stem cell research, and in reproductive technologies more generally, rhetoric and symbolic images have been evoked to influence public opinion. Human embryos themselves are described as either “very small human beings” or “small clusters of cells.” The intentions behind the use of these phrases are clear. One description suggests that embryos are already members of our community and share with us a right to life or at least (...) respectful treatment, whereas the other focuses on the differences between embryos and adult human beings with normal capacities, that is, their lack of sentience and of personal identity. The research on stem cells has been nicknamed “Frankenstein science” or presented as “research that could stop Parkinson disease.” Again, one description reminds us of scary science-fiction scenarios where the scientist is guilty of “playing God,” whereas the other description highlights the worth and potential benefits of the research outcomes. (shrink)

Both professors and institutions of higher education benefit from a vision of academic life that is grounded more firmly in myth than in history. According to the myth created by that traditional vision, scholars pursue research wherever their drive to knowledge takes them, and colleges and universities transmit the fruits of that research to contemporary and future generations as the accumulated wisdom of the ages. Yet the economic and social forces operating on colleges and universities as institutions, as (...) well as on the interests of faculty members within them, are making the myth embodied in the traditional ideal of the academy more and more difficult to sustain. Questions about what an institution of higher education ought to be, about what professors ought to do, and about what relations professors ought to have to the institutions which employ them are being raised and pushed to the fore. These are not theoretical questions, but practical questions of immediate import that must be answered relatively quickly -- and wisely -- if institutions of higher education and professors are not to find themselves inextricably in the grip of forces they cannot change. The myth of disinterested academic research-however beautiful -- and however beneficial -- is under siege. (shrink)

An understanding of the ethical problems that have arisen in the funding of scientific research at universities requires some attention to doctrines that have traditionally been held about science itself. Such doctrines, we hope to show, are themselves central to many of these ethical problems. It is often thought that the questions examined by scientists, and the theories that guide scientific research, are chosen for uniquely scientific reasons, independently of extra-scientific questions of value or merit. We shall argue (...) that this is an illusion. It is an illusion to think, especially in the present era, that science can even have a coherent direction apart from extra-scientific considerations. (shrink)

The art, craft, and science of policing -- Crime and criminals -- Criminal process and prosecution -- The crime-preventive impact of penal sanctions -- Contracts and corporations -- Financial markets -- Consumer protection -- Bankruptcy and insolvency -- Regulating the professions -- Personal injury litigation -- Claiming behavior as legal mobilization -- Families -- Labor and employment laws -- Housing and property -- Human rights instruments -- Constitutions -- Social security and social welfare -- Occupational safety and health -- Environmental (...) regulation -- Administrative justice -- Access to civil justice -- Judicial recruitment, training, and careers -- Trial courts and adjudication -- Appellate courts -- Dispute resolution -- Lay decision-makers in the legal process -- Evidence law -- Civil procedure and courts -- Collective actions -- Law and courts on development and democratization -- How does international law work? -- Lawyers and other legal service providers -- Legal pluralism -- Public images and understandings of courts -- Legal education and the legal academy -- The (nearly) forgotten early empirical legal research -- Quantitative approaches to empirical legal research -- Qualitative approaches to empirical legal research -- The need for multi-method approaches in empirical legal research -- Legal theory and empirical research -- Empirical legal research and policy-making -- The place of empirical legal research in the law school curriculum -- Empirical legal training in the US academy. (shrink)

Over the last decade, stem cell research has generated an enormous amount of public, political and bioethical debate. These debates have overwhelmingly tended to focus on two moral issues: the moral status of human embryos and the duty to care for the sick and vulnerable. This preoccupation, especially on the question of moral status, has not only dichotomized the debate around two fundamentally incommensurable positions, it has come at the cost of other important issues largely being ignored. In highlighting (...) some of the bioethical and regulatory deficiencies of this fixation, we draw on recent developments in the experimental use of autologous adult stem cells to argue for a more inclusive approach to the ethical issues surrounding stem cell research. (shrink)

This volume assesses the ethical, quantitative, and qualitative questions posed by the current financing of biomedical research.

A common complaint against the increasing privatization of research is that research that is conducted with the immediate purpose of producing applicable knowledge will not yield knowledge as valuable as that generated in more curiosity‐driven, academic settings. In this paper, I make this concern precise and reconstruct the rationale behind it. Subsequently, I examine the case of industry research on the giant magnetoresistance effect in the 1990s as a characteristic example of research undertaken under considerable pressure (...) to produce applicable results. The example permits one to arrive at a more optimistic assessment of the epistemic merits of private, application‐driven research. I attempt to specify the conditions that, in this case, advanced the production of interesting and reliable knowledge. (shrink)

The issue of plagiarism—claiming credit for work that is not one’s own, rightly, continues to cause concern in the academic community. An analysis is presented that shows the effects that may arise from metrics-based assessments of research, when credit for an author’s outputs (chiefly publications) is given to an institution that did not support the research but which subsequently employs the author. The incentives for what is termed here “institutional plagiarism” are demonstrated with reference to the UK (...) class='Hi'>Research Assessment Exercise in which submitting units of assessment are shown in some instances to derive around twice the credit for papers produced elsewhere by new recruits, compared to papers produced ‘in-house’. (shrink)

Ethical challenges to certain aspects of research on human subjects are not uncommon; examples include challenges to first-in-human trials (Chapman in J Clin Res Bioethics 2(4):1–8, 2011), certain placebo controlled trials (Anderson in J Med Philos 31:65–81, 2006; Anderson and Kimmelman in Kennedy Inst Ethics J 20(1):75–98, 2010) and “sham” surgery (Macklin in N Engl J Med 341:992–996, 1999). To date, however, there are few challenges to research when the subjects are competent and the research is more (...) than minimal risk with no promise of direct benefit. The principal reason given for allowing research that is more than minimal risk without benefit is that we should respect the autonomy of competent subjects. I argue that though the moral intuitions informing respect for autonomy are sound, there is another set of intuitions regarding what we take to be just treatment of another when one agent knowingly causes or allows suffering on another agent. I argue that concerns generated by commutative justice serve as limitations on permissible research. I highlight our intuitions informing this notion of justice by appealing to work done on theodicy; what counts as a morally sufficient reason for God to allow suffering in humans is applicable also to the researcher-subject relationship. I conclude that all human subjects who are exposed to more than minimal risk research should enjoy the same actual protections (e.g., subpart D) as those given subjects who cannot consent. (shrink)

With the proliferation of networked electronic communication came daunting capabilities to collect, process, combine and store data, resulting in hitherto unseen transformational pressure on the concepts of trust, security and privacy as we know them. The Future Internet will bring about a world where real life will integrate physical and digital life. Technology development for data linking and mining, together with unseen data collection, will lead to unwarranted access to personal data, and hence, privacy intrusion. Trust and identity lie at (...) the basis of many human interactions and transactions, and societies have developed legitimate concern for privacy being essential for freedom and creativity. The burgeoning development of the Information Society, particularly during the past fifteen years, transcended the societal readiness to respond to the transformational change evoked by ICT. We have reached the eleventh hour for the preservation of trust and privacy as elements that can be transposed into our digital future. Europe has been at the forefront in recognizing the importance of privacy protection in relation to digital data, witness the advanced European legislation in this domain. The European Commission recognizes that appropriate measures need to combine technology development with legal means, user awareness and tools supporting data controllers to comply with law in an accountable and transparent way, and that empower users with a controlling stake in managing their personal data. Activities are underway at many levels. European RTD programmes play their role in supporting research in trustworthy ICT, privacy enhancing technologies, privacy-by-design in service layers as well as in networks, enabling technologies such as cryptography, and in generalized frameworks for trust and privacy-protective identity management. (shrink)

In early 2009, President Obama overturned the ban on federal funding for research involving the derivation of human embryonic stem cells (hESC). The Food and Drug Administration (FDA) also approved Geron’s first-in-human hESC trial for spinal cord injury (SCI) patients. We anticipate an increase in both research in the United States to derive hESC and applications to the FDA for approval of clinical trials involving transplantation of hESCs. An increase of such clinical trials will require a concomitant increase (...) in the number of preceding preclinical assays. We examine important issues concerning the use of animals in SCI stem cell research that require a reevaluation of the moral permissibility of studies such as Geron’s. (shrink)

This article analyses current trends in and future expectations of nanotechnology and other key enabling technologies for security as well as dual use nanotechnology from the perspective of the ethical Just War Theory (JWT), interpreted as an instrument to increase the threshold for using armed force for solving conflicts. The aim is to investigate the relevance of the JWT to the ethical governance of research. The analysis gives rise to the following results. From the perspective of the JWT, military (...) research should be evaluated with different criteria than research for civil or civil security applications. From a technological perspective, the boundaries between technologies for civil and military applications are fuzzy. Therefore the JWT offers theoretical grounds for making clear distinctions between research for military, civil security and other applications that are not obvious from a purely technological perspective. Different actors bear responsibility for development of the technology than for resorting to armed force for solving conflicts or for use of weapons and military technologies in combat. Different criteria should be used for moral judgment of decisions made by each type of actor in each context. In addition to evaluation of potential consequences of future use of the weapons or military technologies under development, the JWT also prescribes ethical evaluation of the inherent intent and other foreseeable consequences of the development itself of new military technologies. (shrink)

Informed consent is recognized as a primary ethical requirement to conduct research involving humans. In the investigations with the use of human biological material, informed consent (IC) assumes a differentiated condition on account of the many future possibilities. This work presents suitable alternatives for IC regarding the storage and use of human biological material in research, according to new Brazilian regulations. Both norms – Resolution 441/11 of the National Health Council, approved on 12 May 2011, and Ordinance 2.201 (...) (NATIONAL GUIDELINES FOR BIOREPOSITORIES AND BIOBANKS OF HUMAN BIOLOGICAL MATERIAL FOR RESEARCH PURPOSE) of the Brazil Ministry of Health, approved on 14 September 2011 – state that the consent of subjects for the collection, storage and use of samples stored in Biobanks is necessarily established by means of a Free and Informed Consent Form (ICF). In order to obtain individual and formal statements, this form should contain the following two mutually exclusive options: an explanation about the use of the stored material in each research study, and the need for new consent or the waiver thereof when the material is used for a new study. On the other hand, ICF suitable for Biorepositories must be exclusive and related to specific research. Although Brazilian and international regulations identify the main aspects to be included in the IC, efforts are still necessary to improve the consent process, so that the document will become a bond of trust between subject and researcher. (shrink)

In their recent paper in this journal, Heinz and colleagues accuse proponents of cognitive enhancement of making two unjustified assumptions. The first of these is the assumption that neuroenhancing drugs will be safe; the second is that research into cognitive enhancement does not pose particular ethical problems. Heinz and colleagues argue that both these assumptions are false. Here, I argue that these assumptions are in fact correct, and that Heinz and colleagues themselves make several assumptions that undermine their argument. (...) Neuroenhancement does raise several ethical concerns, but safety and research in this area pose no unique difficulties. (shrink)

This study looks at some of the traits that characterized Argentina’s scientific and university policies under the military regime that spanned from 1976 through 1983. To this end, it delves into a rarely explored empirical observation: financial resource transfers from national universities to the National Scientific and Technological Research Council (CONICET, for its Spanish acronym) during that period. The intention is to show how, by reallocating funds geared to Science and Technology, CONICET was made to expand and decentralize to (...) the detriment of universities. This was the primary tool used by the military regime to thwart higher education’s research development, bolstering research efforts at other realms. Thus, CONICET grew in budget, number of researchers, and staff size, creating new research institutes, while national universities struggled with reduced funding and were forced to shut down their institutes and programs. As a result, CONICET virtually concentrated all scientific research, foregoing the knowledge accumulated at universities, which drove a wedge between both institutions. This military approach to science and technology policy-making is discussed, bearing in mind the notion of dependence—both in terms of the state’s intervention in the inner workings of the scientific-university field as well as regarding the role played by international financial support in scientific research development. (shrink)

In this paper, the results of a pilot interview study with 19 subjects participating in an EEG-based non-invasive brain–computer interface (BCI) research study on stroke rehabilitation and assistive technology and of a survey among 17 BCI professionals are presented and discussed in the light of ethical, legal, and social issues in research with human subjects. Most of the users were content with study participation and felt well informed. Negative aspects reported include the long and cumbersome preparation procedure, discomfort (...) with the cap and the wet electrodes, problems concerning BCI control, and strains during the training sessions. In addition, some users reflected on issues concerning system security. When asked for morally problematic issues in this field of non-invasive BCI research, the BCI professionals stressed the need for correct information transfer, the obligation to avoid unrealistic expectations in study participants, the selection of study participants, benefits and strains of participation, BCI illiteracy, the possibility of detrimental brain modifications induced by BCI use, and problems that may arise at the end of the trials. Furthermore, privacy issues were raised. Based on the results obtained, psychosocial and ethical aspects of EEG-based non-invasive BCI research are discussed and possible implications for future research addressed. (shrink)

Pt. 1. Conceputal issues -- pt. 2. Qualitative research -- pt. 3. Quantitative approaches.

To identify motivational factors linked to child health status that affected the likelihood of parents’ allowing their child to participate in pediatric research.

Background: Waiving parent permission can be an option in some epidemiological and social research with adolescents. However, exemptions have not been uniformly considered or applied. Our aim is to critically assess the different factors that could be taken into account when making decisions about waiving active parental permission in observational research with adolescents.DiscussionIn some cases alternatives to parental permission could be applied to protect the rights of both adolescents and parents and also to assure the benefits to adolescents (...) as a group that can come from appropriately conducted studies. However, the criteria of ensuring minimal risk can be difficult to define and apply and a distinction between harm and discomfort is reviewed. Waiving active parental permission could be acceptable when the risk of harm is minimal; when the research questions are related to an activity for which adolescents are not legally considered to be children; when the risk of harm or discomfort may increase if parental permission is required; and when risk of discomfort is low because the questionnaire is not potentially offensive for some adolescents and/or for some parents.SummaryStringent rules concerning parental permission in some studies could be detrimental to adolescents. A framework and a decision tree guide are proposed to help researchers and Research Ethics Committees in their decisions on whether active parental permission must be obtained. (shrink)

Background: This article describes the types of community-wide benefits provided by investigators conducting public health research in South Asia as well as their self-reported reasons for providing such benefits. Methods: We conducted 52 in-depth interviews to explore how public health investigators in low-resource settings make decisions about the delivery of ancillary care to research subjects. In 39 of the interviews respondents described providing benefits to members of the community in which they conducted their study. We returned to our (...) narrative dataset to find answers to two questions: What types of community-wide benefits do researchers provide when conducting public health intervention studies in the community setting, and what reasons do researchers give when asked why they provided community-wide benefits? Findings: The types of community-wide benefits delivered were directed to the health and well-being of the population. The most common types of benefits delivered were the facilitation of access to health care for individuals in acute medical need and emergency response to natural disasters. Respondents' self-reported reasons when asked why they provided such benefits fell into 2 general categories: intrinsic importance and instrumental importance. (shrink)

BackgroundDue to the important role of depression in major illnesses, screening measures for depression are commonly used in medical research. The protocol for managing participants with positive screens is unclear and raises ethical concerns. The aim of this article is to identify and critically discuss the ethical issues that arise when a positive screen for depression is detected, and offer some guidance on managing these issues.DiscussionDeciding on whether to report positive screens to healthcare practitioners is both an ethical and (...) a pragmatic dilemma. Evidence suggests that reporting positive depression screens should only be considered in the context of collaborative care. Possible adverse effects, such as the impact of false-positive results, potentially inappropriate labelling, and potentially inappropriate treatment also need to be considered. If possible, the psychometric properties of the selected screening measure should be determined in the target population, and a threshold for depression that minimises the rate of false-positive results should be chosen. It should be clearly communicated to practitioners that screening scores are not diagnostic for depression, and they should be informed about the diagnostic accuracy of the measure. Research participants need to be made aware of the consequences of the detection of high scores on screening measures, and to be fully informed about the implications of the research protocol.SummaryFurther research is needed and the experiences of researchers, participants, and practitioners need to be collated before the value of reporting positive screens for depression can be ascertained. In developing research protocols, the ethical challenges highlighted should be considered. Participants must be agreeable to the agreed protocol and efforts should be made to minimise potentially adverse effects. (shrink)

The Hwang affair, a dramatic and far reaching instance of scientific fraud, shocked the world. This collective national failure prompted various organizations in Korea, including universities, regulatory agencies, and research associations, to engage in self-criticism and research ethics reforms. This paper aims, first, to document and review research misconduct perpetrated by Hwang and members of his research team, with particular attention to the agencies that failed to regulate and then supervise Hwang’s research. The paper then (...) examines the research ethics reforms introduced in the wake of this international scandal. After reviewing American and European research governance structures and policies, policy makers developed a mixed model mindful of its Korean context. The third part of the paper examines how research ethics reform is proactive (a response to shocking scientific misconduct and ensuing external criticism from the press and society) as well as reactive (identification of and adherence to national or international ethics standards). The last part deals with Korean society’s response to the Hwang affair, which had the effect of a moral atomic bomb and has led to broad ethical reform in Korean society. We conceptualize this change as ethical modernization, through which the Korean public corrects the failures of a growth-oriented economic model for social progress, and attempts to create a more trustworthy and ethical society. (shrink)

Globalization, political upheavals, and Western economic struggles have caused a geographical reprioritization in the realm of drug development and human clinical research. Regulatory and cost hurdles as well as a saturation of research sites and subjects in Western countries have forced the pharmaceutical industry to place an unprecedented level of importance on emerging markets, injecting Western corporate initiatives into cultures historically and socially isolated from Western-centric value systems. One of the greatest recipients of this onslaught of Western business (...) and research practices is the Russian Federation. Namely, market forces are dictating a focused research initiative in the traditional emerging markets, but this focus may be at the expense of individual and societal dignity. (shrink)

The authors report the first Italian experience of a research ethics committee (REC) audit focused on the evaluation of the REC’s compliance with standard operating procedures, requirements in insurance coverage, informed consent, protection of privacy and confidentiality, predictable risks/harms, selection of subjects, withdrawal criteria and other issues, such as advertisement details and justification of placebo. The internal audit was conducted over a two-year period (March 2009–February 2011) divided into quarters to better value the influence of the new insurance coverage (...) regulation that came into effect in March 2010 (Ministerial Decree of 14 July, 2009) and expand the requirements to safeguard participants in clinical drug trials including other critical items as information and consent and the risks to benefits ratio. Out of a total of 639 REC’s opinions and research studies, 316 were reviewed. Regarding the insurance policy requirements, Auditor/REC non-compliance occurred only in one case. The highest number of Auditor/REC non-compliance was in regard to information and consent, which should have incurred a suspended decision rather than a favorable opinion. This internal audit shows the importance and the difficulty of the review process. For this reason, specific courses for members of the research ethics committee and for those who aspire to become auditors will be provided. There may also be efforts to improve the standard operating procedures already in place. (shrink)

We argue that the recommendations made by the Institute of Medicine’s 2011 report, Chimpanzees in Biomedical and Behavioral Research: Assessing the Necessity, are methodologically and ethically confused. We argue that a proper understanding of evolution and complexity theory in terms of the science and ethics of using chimpanzees in biomedical research would have had led the committee to recommend not merely limiting but eliminating the use of chimpanzees in biomedical research. Specifically, we argue that a proper understanding (...) of the difference between the gross level of examination of species and examinations on finer levels can shed light on important methodological and ethical inconsistencies leading to ignorance of potentially unethical practices and policies regarding the use of animals in scientific research. (shrink)

There is currently a gap between assessment and intervention in the literature concerned with climate change and food. While intervention is local and context dependent, current assessments are usually global and abstract. Available assessments are useful for understanding the scale of the effects of climate change and they are ideal for motivating arguments in favor of mitigation and adaptation. However, adaptation projects need assessments that can provide data to support their efforts. This requires the adoption of a more local and (...) context-sensitive approach to assessments. I suggest that Community-Based Participatory Research has the potential to be a tool for such an approach. (shrink)

This monograph examines the past, present, and potential relationship between American pragmatism and communication research. The contributors provide a bridge between communication studies and philosophy, subjects often developed somewhat in isolation from each other. Addressing topics, such as qualitative and quantitative research, ethics, media research, and feminist studies, the chapters in this volume: *discuss how a pragmatic, Darwinian approach to inquiry has guided and might further guide communication research; *advocate a functional view of communication, based on (...) Dewey's mature notion of transaction; *articulate a pragmatist's aesthetics and connect it to Deweyan democracy; *discuss the similarities and differences between Dewey's notion of inquiry and the philosophical hermeneutics of Hans-Georg Gadamer; *apply accommodation theory, linked to symbolic interactionism and more generally to the social behaviorism of George H. Mead and his followers, to media research; *interpret media-effects evidence in light of pragmatist ideas about inquiry; and *argue that pragmatism theorizes about despair and life's sense of the tragic. This book is written to be readily accessible to students and professional academics within and outside the field of communication studies without extensive training in specialized areas of communication study. (shrink)

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. (shrink)

It is the epistemic as well as the ethical responsibility of academics to aim to approach their research and teaching with a proper understanding of the ultimate ethical purpose or telos of their defining activities and products, which is the practical aim of promoting human flourishing. Minimally, academics should aim at understanding, and a key component of understanding is to understand the ideal ethical purpose of what is being researched and taught. For instance, sadistic Nazi medical researchers and teachers—Mengeles (...) of sorts—in addition to having reprehensible commitments, would be significantly ignorant about their own intellectual concerns by virtue of their abject (belief-expressing) commitments. I will show that insights drawn from extreme cases such as this one apply across disciplines and in less extreme cases. (shrink)

In this paper we argue that the consensus around normative standards for the ethics of research in clinical trials, strongly influenced by the Declaration of Helsinki, is perceived from various quarters as too conservative and potentially restrictive of research that is seen as urgent and necessary. We examine this problem from the perspective of various challengers who argue for alternative approaches to what ought or ought not to be permitted. Key themes within this analysis will examine these claims (...) and argue they have implications for the interests of the research subject, research governance and regulation. Using our work with TREAT-NMD, the neuromuscular clinical trials network, we posit that there is a place for advancing the discourse of moral rights and moral duties in the context of research, especially from the perspective of patients and their families, and for including the politics of patient activism and empowerment. At the same time we remain vigilant to the danger that the therapeutic misconception and other serious vulnerabilities for the patient population in clinical trials, are at risk of being overlooked. (shrink)

Comprehensive in scope and research, this book will be a crucial resource for researchers in the medical sciences, as well as teachers and students alike.

Several foundational documents of bioethics mention the special obligation researchers have to vulnerable research participants. However, the treatment of vulnerability offered by these documents often relies on enumeration of vulnerable groups rather than an analysis of the features that make such groups vulnerable. Recent attempts in the scholarly literature to lend philosophical weight to the concept of vulnerability are offered by Luna and Hurst. Luna suggests that vulnerability is irreducibly contextual and that Institutional Review Boards (Research Ethics Committees) (...) can only identify vulnerable participants by carefully examining the details of the proposed research. Hurst, in contrast, defines the vulnerable as those especially at risk of incurring the wrongs to which all research ethics participants are exposed. We offer a more substantive conception of vulnerability than Luna but one that gives rise to a different rubric of responsibilities from Hurst's. While we understand vulnerability to be an ontological condition of human existence, in the context of research ethics, we take the vulnerable to be research subjects who are especially prone to harm or exploitation. Our analysis rests on developing a typology of sources of vulnerability and showing how distinct sources generate distinct obligations on the part of the researcher. Our account emphasizes that the researcher's first obligation is not to make the research participant even more vulnerable than they already are. To illustrate our framework, we consider two cases: that of a vulnerable population involved in international research and that of a domestic population of people with diminished capacity. (shrink)

Executive Summary There is a general perception that biomedical research has not given the same attention to the health problems of women that it has given ...

This book examines the controversies surrounding biomedical research in the twenty-first century from a human rights perspective, analyzing the evolution and ...

It has been suggested that community advisory boards (CABs) can play a role in minimising exploitation in international research. To get a better idea of what this requires and whether it might be achievable, the paper first describes core elements that we suggest must be in place for a CAB to reduce the potential for exploitation. The paper then examines a CAB established by the Shoklo Malaria Research Unit under conditions common in resource-poor settings – namely, where individuals (...) join with a very limited understanding of disease and medical research and where an existing organisational structure is not relied upon to serve as the CAB. Using the Tak Province Border Community Ethics Advisory Board (T-CAB) as a case study, we assess the extent to which it might be able to take on a role minimising exploitation were it to decide to do so. We investigate whether, after two years in operation, T-CAB is capable of assessing clinical trials for exploitative features and addressing those found to have them. The findings show that, although T-CAB members have gained knowledge and developed capacities that are foundational for one-day taking on a role to reduce exploitation, their ability to critically evaluate studies for the presence of exploitative elements has not yet been strongly demonstrated. In light of this example, we argue that CABs may not be able to perform such a role for a number of years after initial formation, making it an unsuitable responsibility for many short-term CABs. (shrink)

This text is an ideal introduction for students to the basic mathematics of operations research as well as a valuable source of references to early literature ...

Human Biological Materials (HBMs) are an invaluable resource in biomedical research. Objective To determine if researchers and a Research Ethics Committee (REC) at a South African institution addressed ethical issues pertaining to HBMs in collaborative research with developed countries. Study Design Ethically approved retrospective cross-sectional descriptive audit. Results Of the 1305 protocols audited, 151 (11.57%) fulfilled the study's inclusion criteria. Compared to other developed countries, a majority of sponsors (90) were from the USA (p = 0.0001). The (...) principle investigators (PIs) in all 151 protocols informed the REC of their intent to store HBMs. Only 132 protocols informed research participants (P < 0.0001). In 148 protocols informed consent (IC) was obtained from research participants, 116 protocols (76.8%) solicited broad consent compared to specific consent (32; 21.2%) [p < 0.0001]. In 105 cases a code was used to maintain confidentiality. HBMs were anonymised in 14 protocols [p < 0.0001]. More protocols informed the REC (90) than the research participants (67) that HBMs would be exported (p = 0.011). Export permits (EPs) and Material Transfer Agreements (MTAs) were not available in 109 and 143 protocols, respectively. Conclusions Researchers and the REC did not adequately address the inter-related ethical and regulatory issues pertaining to HBMs. There was a lack of congruence between the ethical guidelines of developed countries and their actions which are central to the access to HBMs in collaborative research. HBMs may be leaving South Africa without EPs and MTAs during the process of international collaborative research. (shrink)

Subpart B of 45 Code of Federal Regulations Part 46 (CFR) identifies the criteria according to which research involving pregnant women, human fetuses, and neonates can be conducted ethically in the United States. As such, pregnant women and fetuses fall into a category requiring “additional protections,” often referred to as “vulnerable populations.” The CFR does not define vulnerability, but merely gives examples of vulnerable groups by pointing to different categories of potential research subjects needing additional protections. In this (...) paper, I assess critically the role of this categorization of pregnant women involved in research as “vulnerable,” both as separate entities and in combination with the fetuses they carry. In particular, I do three things: (1) demonstrate that pregnant women qua pregnancy are either not “vulnerable” according to any meaningful definition of that term or that such vulnerability is irrelevant to her status as a research participant; (2) argue that while a fetus may be vulnerable in terms of dependency, this categorization does not equate to the vulnerability of the pregnant woman; and (3) suggest that any vulnerability that appends to women is precisely the result of federal regulations and dubious public perceptions about pregnant women. I conclude by demonstrating how this erroneous characterization of pregnant women as “vulnerable” and its associated protections have not only impeded vital research for pregnant women and their fetuses, but have also negatively affected the inclusion of all women in clinical research. (shrink)

Background Continued advances in human microbiome research and technologies raise a number of ethical, legal, and social challenges. These challenges are associated not only with the conduct of the research, but also with broader implications, such as the production and distribution of commercial products promising maintenance or restoration of good physical health and disease prevention. In this article, we document several ethical, legal, and social challenges associated with the commercialization of human microbiome research, focusing particularly on how (...) this research is mobilized within economic markets for new public health uses. Methods We conducted in-depth, semi-structured interviews (2009–2010) with 63 scientists, researchers, and National Institutes of Health project leaders (“investigators”) involved with human microbiome research. Interviews explored a range of ethical, legal, and social dimensions of human microbiome research, including investigators’ perspectives on commercialization. Using thematic content analysis, we identified and analyzed emergent themes and patterns. Results Investigators discussed the commercialization of human microbiome research in terms of (1) commercialization, probiotics, and issues of safety, (2) public awareness of the benefits and risks of dietary supplements, and (3) regulation. Conclusion The prevailing theme of ethical, legal, social concern focused on the need to find a balance between the marketplace, scientific research, and the public’s health. The themes we identified are intended to serve as points for discussions about the relationship between scientific research and the manufacture and distribution of over-the-counter dietary supplements in the United States. (shrink)

The importance of public confidence in scientific findings and trust in scientists cannot be overstated. Thus, it becomes critical for the scientific community to focus on enhancing the strategies used to educate future scientists on ethical research behaviors. What we are lacking is knowledge on how faculty members shape and develop ethical research standards with their students. We are presenting the results of a survey with 3,500 research faculty members. We believe this is the first report on (...) how faculty work with and educate their PhD students on basic research standards. Specifically, we wanted to determine whether individual faculty members, who are advisors or mentors, differ in how they implemented components of responsible conduct of research (RCR) with their PhD students. Mentors were more likely than advisors or supervisors to report working with all of their PhDs, who graduated in the last 5 years, on the 17 recognized critical components of RCR training and research skill development. We also found about half of the faculty members believe RCR is an institutional responsibility versus a faculty responsibility. Less than a quarter have had opportunities to participate in faculty training to be a better mentor, advisor, or research teacher, and about one third of faculty did not or could not remember whether they had guidelines related to their responsibilities to PhD students. We discuss the implications of our findings and focus on ways that PhD research mentoring can be enhanced. (shrink)

BackgroundObtaining a research participant’s voluntary and informed consent is the bedrock of sound ethics practice. Greater inclusion of children in research has led to questions about how paediatric consent operates in practice to accord with current and emerging legal and socio-ethical issues, norms, and requirements.MethodsEmploying a qualitative thematic content analysis, we examined paediatric consent forms from major academic centres and public organisations across Canada dated from 2008–2011, which were purposively selected to reflect different types of research ethics (...) boards, participants, and studies. The studies included biobanking, longitudinal studies, and gene-environment studies. Our purpose was to explore the following six emerging issues: (1) whether the scope of parental consent allows for a child’s assent, dissent, or future consent; (2) whether the concepts of risk and benefit incorporate the child’s psychological and social perspective; (3) whether a child’s ability to withdraw is respected and to what extent withdrawal is permitted; (4) whether the return of research results includes individual results and/or incidental findings and the processes involved therein; (5) whether privacy and confidentiality concerns adequately address the child’s perspective and whether standard data and/or sample identifiability nomenclature is used; and (6) whether retention of and access to paediatric biological samples and associated medical data are addressed.ResultsThe review suggests gaps and variability in the consent forms with respect to addressing each of the six issues. Many forms did not discuss the possibility of returning research results, be they individual or general/aggregate results. Forms were also divided in terms of the scope of parental consent (specific versus broad), and none discussed a process for resolving disputes that can arise when either the parents or the child wishes to withdraw from the study.ConclusionsThe analysis provides valuable insight and evidence into how consent forms address current ethical issues. While we do not thoroughly explore the contexts and reasons behind consent form gaps and variability, we do advocate and formulate the development of best practices for drafting paediatric health research consent forms. This can greatly ameliorate current gaps and facilitate harmonised and yet contextualised approaches to paediatric health research ethics. (shrink)

In this paper we analyse the degree to which a distinction between social science and public health research and other non-research activities can account for differences between a number of large scale social surveys performed at the national and European level. The differences we will focus on are differences in how participation is elicited and how data are used for government, research and other purposes. We will argue that the research / non-research distinction does not (...) account for the identified differences in recruitment or use and that there are no other convincing justifications. We argue that this entails that eliciting participation by coercion or manipulation becomes very difficult to justify. (shrink)

In Sweden, most patients are recruited into biobank research by non-researcher doctors. Patients' trust in doctors may therefore be important to their willingness to participate. We suggest a model of trust that makes sense of such transitions of trust between domains and distinguishes adequate trust from mistaken trust. The unique position of doctors implies, we argue, a Kantian imperfect duty to compensate for patients' mistaken trust. There are at least three kinds of mistaken trust, each of which requires a (...) different set of countermeasures. First, trust is mistaken when necessary competence is lacking; the competence must be developed or the illusion dispelled. Second, trust is irrational whenever the patient is mistaken about his actual reasons for trusting. Care must therefore be taken to support the patient's reasoning and moral agency. Third, some patients inappropriately trust doctors to recommend only research that will benefit them directly. Such trust should be counteracted by nurturing a culture where patients expect to be asked occasionally to contribute to the common good. (shrink)

While public administration research is thriving because of increased attention to social scientific rigor, lingering problems of methods and ethics remain. This article investigates the reporting of ethics approval within public administration publications. Beginning with an overview of ethics requirements regarding research with human participants, I turn to an examination of human participants protections for public administration research. Next, I present the findings of my analysis of articles published in the top five public administration journals over the (...) period from 2000 to 2012, noting the incidences of ethics approval reporting as well as funding reporting. In explicating the importance of ethics reporting for public administration research, as it relates to replication, reputation, and vulnerable populations, I conclude with recommendations for increasing ethics approval reporting in public administration research. (shrink)

A REFERENCE UUH FOR Llb^nv, J'-t ONLY Operations Research With Special Reference to Non-Military Applications A Comprehensive Scientific Aid to Executive Decisions OPERATIONS Research (or, as the British say, Operational Research) is ...

The last 20 years have seen a staggering growth in the practice of off-shoring clinical research to low-and middle-income countries (LICs and MICs), a growth that has been matched by the neoliberal policies adopted by host countries towards attracting trials to their shores. A recurring concern in this context is the charge of exploitation, linked to various aspects of off-shoring. In this paper, I examine Alan Wertheimer's approach and offer an alternative view of understanding exploitation in this context. I (...) will suggest that the justification for the enterprise of research is largely dependent on its integration within a health system from which participants regularly benefit and I argue that an attention to a principle of reciprocity will enable us to better recognize and address exploitation in international research. (shrink)

Background: The formulation and implementation of national ethical regulations to protect research participants is fundamental to ethical conduct of research. Ethics education and capacity are inadequate in developing African countries. This study was designed to develop a module for online training in research ethics based on the Nigerian National Code of Health Research Ethics and assess its ease of use and reliability among biomedical researchers in Nigeria.MethodologyThis was a three-phased evaluation study. Phase one involved development of (...) an online training module based on the Nigerian Code of Health Research Ethics (NCHRE) and uploading it to the Collaborative Institutional Training Initiative (CITI) website while the second phase entailed the evaluation of the module for comprehensibility, readability and ease of use by 45 Nigerian biomedical researchers. The third phase involved modification and re-evaluation of the module by 30 Nigerian biomedical researchers and determination of test-retest reliability of the module using Cronbach’s alpha. Results: The online module was easily accessible and comprehensible to 95% of study participants. There were significant differences in the pretest and posttest scores of study participants during the evaluation of the online module (p = 0.001) with correlation coefficients of 0.9 and 0.8 for the pretest and posttest scores respectively. The module also demonstrated excellent test-retest reliability and internal consistency as shown by Cronbach’s alpha coefficients of 0.92 and 0.84 for the pretest and posttest respectively. Conclusion: The module based on the Nigerian Code was developed, tested and made available online as a valuable tool for training in cultural and societal relevant ethical principles to orient national and international biomedical researchers working in Nigeria. It would complement other general research ethics and Good Clinical Practice modules. Participants suggested that awareness of the online module should be increased through seminars, advertisement on government websites and portals used by Nigerian biomedical researchers, and incorporation of the Code into the undergraduate medical training curriculum. (shrink)

An axiom of medical research ethics is that a protocol is moral only if it has a “favorable risk-benefit ratio”. This axiom is usually interpreted in the following way: a medical research protocol is moral only if it has a positive expected value -- that is, if it is likely to do more good (to both subjects and society) than harm. I argue that, thus interpreted, the axiom has two problems. First, it is unusable, because it requires us (...) to know more about the potential outcomes of research than we ever could. Second, it is false, because it conflicts with the so-called “soft paternalist” principles of liberal democracy. In place of this flawed rule I propose a new way of making risk-benefit assessments, one that does comport with the principles of liberalism. I argue that a protocol is moral only if it would be entered into by competent subjects who are informed about the protocol. The new rule this eschews all pseudo-utilitarian calculation about the protocol’s likely harms and benefits. (shrink)

The significance of animals in research cannot be over-emphasized. The use of animals for research and training in research centres, hospitals and schools is progressively increasing. Advances in biotechnology to improve animal productivity require animal research. Drugs being developed and new interventions or therapies being invented for cure and palliation of all sorts of animal diseases and conditions need to be tested in animals for their safety and efficacy at some stages of their development. Drugs and (...) interventions for human use pass through a similar development process and must be tested pre-clinically in laboratory animals before clinical trials in humans can be conducted. Therefore, animals are important players in research processes which directly and indirectly benefit animals and humans. However, questions remain as to whether these uses of animals consider the best interests of animals themselves. Various research and training institutions in Tanzania have established some guidelines on animal use, including establishing animal ethics committees. However, most institutions have not established oversight committees. In institutions where there may be guidelines and policies, there are no responsible committees or units to directly oversee if and how these guidelines and policies are enforced; thus, implementation becomes difficult or impossible. This paper endeavours to raise some issues associated with the responsible use of animals in research and training in Tanzania and highlights suggestions for improvement of deficiencies that exist in order to bridge the gap between what ought to be practised and what is practised. (shrink)

Stimulated by late-1990s debate in the UK on quality, effectiveness and usefulness of educational research (reports by OFSTED, DFEE and NFER), this book shows ...

With increasing calls for global health research there is growing concern regarding the ethical challenges encountered by researchers from high-income countries (HICs) working in low or middle-income countries (LMICs). There is a dearth of literature on how to address these challenges in practice. In this article, we conduct a critical analysis of three case studies of research conducted in LMICs. We apply emerging ethical guidelines and principles specific to global health research and offer practical strategies that researchers (...) ought to consider. We present case studies in which Canadian health professional students conducted a health promotion project in a community in Honduras; a research capacity-building program in South Africa, in which Canadian students also worked alongside LMIC partners; and a community-university partnered research capacity-building program in which Ecuadorean graduate students, some working alongside Canadian students, conducted community-based health research projects in Ecuadorean communities. We examine each case, identifying ethical issues that emerged and how new ethical paradigms being promoted could be concretely applied. We conclude that research ethics boards should focus not only on protecting individual integrity and human dignity in health studies but also on beneficence and non-maleficence at the community level, explicitly considering social justice issues and local capacity-building imperatives. We conclude that researchers from HICs interested in global health research must work with LMIC partners to implement collaborative processes for assuring ethical research that respects local knowledge, cultural factors, the social determination of health, community participation and partnership, and making social accountability a paramount concern. (shrink)

"...{The first edition of Professor Cryer's book was} absolutely outstanding, in four main respects. First, it is comprehensive in its scope, covering everything from applying to undertaking a research degree. Second, it is applicable to PhDs across the board. Third, the book is exceptionally well written and highly readable. Finally, at each stage Pat Cryer has included questions and exercises to enable readers to reflect on their practice, check out whether they are on track and, if not, discover how (...) they might return themselves to it. Overall, Pat Cryer has made a major contribution to the field and produced a quite exceptional book. It ought to be compulsory reading for intending or actual postgraduates and for academic staff teaching research training programmes." - Assessment & Evaluation in Higher Education The second edition of this Open University set book is, like the first edition, for postgraduate research students wherever the language of instruction is English. Irrespective of their field of study, it will make their research programmes and day-to-day lives more productive and enjoyable. The book is easy to dip into and is in conversational style. Interest and realism are added through anecdotes, extracts from the literature and pithy quotations. The second edition is a complete revision of the original. New emphases include: the needs of the growing number of part time postgraduates; a wider understanding of the term 'research student' to embrace all postgraduate students undertaking research, whether for traditional PhDs and MPhils or within programmes such as professional doctorates, 'taught' masters degrees, diplomas and certificates; information technology as a day-to-day tool. There are also two new chapters: one on options for postgraduate study and research and the other on skills development and employment issues. There is a foreword by Professor Sir Martin Harris, Chair of the National UK Review of Postgraduate Education. (shrink)

In this paper, we describe the potential role laypersons on ethics committees can play in ensuring community concerns are addressed in the design and implementation of genomic research. We draw inferences from the outcome of an empirical study of the impact of training of laypersons to address community engagement issues in ethics review of research protocol. While this paper does not advocate a particular solution, it describes the importance of community engagement in genomic research, the current limitations (...) there are in engaging communities in the design of these research projects and how communities can be indirectly engaged in the design and implementation of genomic research through the engagement of laypersons on ethics committees. However, to ensure that these laypersons can play this role, their capacity needs to be built to play this role appropriately. There is evidence to show that where resources are invested in building the capacity of laypersons to play their role as community ‘watchdogs’ in research, they play this role aptly. Community engagement is important in genomic research as genomic researchers will increasingly require community perspectives in critical ethics decision making. (shrink)

This paper describes a three-year project designed to build the capacity of members of research ethics committes to perform their roles and responsibilities efficiently and effectively. The project participants were made up of a cross-section of the membership of 13 Research Ethics Committees (RECs) functioning in Nigeria. They received training to develop their capacity to evaluate research protocols, monitor trial implementation, provide constructive input to trial staff, and assess the trial's success in promoting community engagement in the (...) research. Following the training, technical assistance was provided to participants on an ongoing basis and the project's impacts were assessed quantitatively and qualitatively. Results indicate that sustained investment in capacity building efforts (including training, ongoing technical assistance, and the provision of multiple tools) improved the participants’ knowledge of both the ethical principles relevant to biomedical research and how effective REC should function. Such investment was also shown to have a positive impact on the knowledge levels of other RECs members (those who did not receive training) and the overall operations of the RECs to which the participants belonged. Building the capacity of REC members to fulfill their roles effectively requires sustained effort and investment and pays off by enabling RECs to fulfill their essential mission of ensuring that trials are conducted safely and ethically. (shrink)

Scientists, clinicians, and bioethicists are worried about how so-called personhood measures would limit access to certain types of contraception, research involving stem cells, and access to fertility treatments. While these measures have been struck down in Colorado, South Dakota, California, and Mississippi, the bill signed into law in Oklahoma in February deserves critical scrutiny, particularly into the ways these legal measures influence eligibility for clinical research. Oklahoma's bill states that the laws of the state “shall be interpreted and (...) construed to acknowledge on behalf of the unborn child at every stage of development all the rights, privileges, and immunities available to other persons, citizens, and residents of this state.”. (shrink)

African researchers and their collaborators have been making significant contributions to useful research findings and discoveries in Africa. Despite evidence of scientific misconduct even in heavily regulated research environments, there is little documented information that supports prevalence of research misconduct in Africa. Available literature on research misconduct has focused on the developed world, where credible research integrity systems are already in place. Public attention to research misconduct has lately increased, calling for attention to weaknesses (...) in current research policies and regulatory frameworks. Africa needs policies, structural and governance systems that promote responsible conduct of research. To begin to offset this relative lack of documented evidence of research misconduct, contributors working in various research institutions from nine African countries agreed to share their experiences to highlight problems and explore the need to identify strategies to promote research integrity in the African continent. The experiences shared include anecdotal but reliable accounts of previously undocumented research misconduct, including some ‘normal misbehavior’ of frontline staff in those countries. Two broad approaches to foster greater research integrity are proposed including promotion of institutional and individual capacity building to instil a culture of responsible research conduct in existing and upcoming research scientist and developing deterrent and corrective policies to minimize research misconduct and other questionable research practices. By sharing these experiences and through the strategies proposed, the authors hope to limit the level of research misconduct and promote research integrity in Africa. (shrink)

Although in the US there have been dozens of subpoenas seeking information gathered by academic researchers under a pledge of confidentiality, few cases have garnered as much attention as the two sets of subpoenas issued to Boston College seeking interviews conducted with IRA operatives who participated in The Belfast Project, an oral history of The Troubles in Northern Ireland. For the researchers and participants, confidentiality was understood to be unlimited, while Boston College has asserted that it pledged confidentiality only “to (...) the extent American law allows.” This a priori limitation to confidentiality is invoked by many researchers and universities in the United States, Canada and Great Britain, but there has been little discussion of what the phrase means and what ethical obligations accompany it. An examination of the researchers’ and Boston College’s behaviour in relation to the subpoenas provides the basis for that discussion. We conclude that Boston College has provided an example that will be cited for years to come of how not to protect research participants to the extent American law allows. (shrink)

Background Research is fundamental to improving the quality of health care. The need for regulation of research is clear. However, the bureaucratic complexity of research governance has raised concerns that the regulatory mechanisms intended to protect participants now threaten to undermine or stifle the research enterprise, especially as this relates to sensitive topics and hard to reach groups. Discussion Much criticism of research governance has focused on long delays in obtaining ethical approvals, restrictions imposed on (...) study conduct, and the inappropriateness of evaluating qualitative studies within the methodological and risk assessment frameworks applied to biomedical and clinical research. Less attention has been given to the different epistemologies underlying biomedical and qualitative investigation. The bioethical framework underpinning current regulatory structures is fundamentally at odds with the practice of emergent, negotiated micro-ethics required in qualitative research. The complex and shifting nature of real world settings delivers unanticipated ethical issues and (occasionally) genuine dilemmas which go beyond easy or formulaic ‘procedural’ resolution. This is not to say that qualitative studies are ‘unethical’ but that their ethical nature can only be safeguarded through the practice of ‘micro-ethics’ based on the judgement and integrity of researchers in the field. Summary This paper considers the implications of contrasting ethical paradigms for the conduct of qualitative research and the value of ‘empirical ethics’ as a means of liberating qualitative (and other) research from an outmoded and unduly restrictive research governance framework based on abstract prinicipalism, divorced from real world contexts and values. (shrink)

Millions of people undergo displacement in the world. Internally displaced people (IDP) are especially vulnerable as they are not protected by special legislation in contrast to other migrants. Research conducted among IDPs must be correspondingly sensitive in dealing with ethical issues that may arise. Muslim IDPs in Puttalam district in the North-Western province of Sri Lanka were initially displaced from Northern Sri Lanka due to the conflict in 1991. In the backdrop of a study exploring the prevalence of common (...) mental disorders among the IDPs, researchers encountered various ethical challenges. These included inter-related issues of autonomy, non-maleficence, beneficence, confidentiality and informed consent, and how these were tailored in a culture-specific way to a population that has increased vulnerability. This paper analyses how these ethical issues were perceived, detected and managed by the researchers, and the role of ethics review committees in mental health research concerning IDPs. The relevance of guidelines and methodologies in the context of an atypical study population and the benefit versus risk potential of research for IDPs are also discussed. The limitations that were encountered while dealing with ethical challenges during the study are discussed. The concept of post-research ethical conduct audit is suggested to be considered as a potential step to minimize the exploitation of vulnerable populations such as IDPs in mental health research. (shrink)

Research ethics is predominantly taught and practiced in Anglophone countries, particularly those in North America and Western Europe. Initiatives to build research ethics capacity in developing countries must attempt to avoid imposing foreign frameworks and engage with ethical issues in research that are locally relevant. This article describes the process and outcomes of a capacity-building workshop that took place in Kinshasa, Democratic Republic of Congo in the summer of 2011. Although the workshop focused on a specific ethical (...) theme – the responsibilities of researchers to provide health-related care to their research participants – we argue that the structure of the workshop offers a useful method for engaging with research ethics in general, and the theme of ancillary care encourages a broad perspective on research ethics that is highly pertinent in low-income countries. The workshop follows an interactive, locally driven model that could be fruitfully replicated in similar settings. (shrink)

More recent advancements in digital technologies have significantly alleviated the dissemination of new scientific ideas as well as the storing, searching and retrieval of large amounts of published research findings. While not denying the benefits of this novel ‘economy of memory,’ this paper endeavors to shed light on the ways in which the use of digital technologies may be linked to a distortion of the system of formal publications that facilitates the effective dissemination and collaborative building of scientific knowledge. (...) Through combining three different strands of discussion that are often left separate – those pertaining to the cognitive effects of new technological memory systems, those pertaining to citation and publishing practices, and those regarding the effects of formalizing modes of research governance – it is also shown that this distortion is not merely a consequence of technological developments alone. Rather, such a distortion is inseparable from and potentially aggravated by the spreading of increasingly dysfunctional, formalizing research governance mechanisms. It is argued that these mechanisms run the risk of fostering the proliferation of knowledge practices that are characterized by an increasing degree of superficiality as well as the strategic publication of research that is of a decreasing degree of originality. If left unaddressed, this may pose a serious threat to the efficiency and effectiveness of the formal record of scientific knowledge as a tool for the dissemination of original research. By extension, this may in the long run seriously undermine the capacity of the publicly funded research system more generally. (shrink)

The intention of this article is to make an educational analysis of Merleau-Ponty’s theory of experience in order to see what it implicates for educational practice as well as educational research. In this way, we can attain an understanding what embodied experience might mean both in schools and other educational settings and in researching educational activities. The analysis will take its point of departure in Merleau-Ponty’s analysis and criticism of empiricist and neokantian theories of experience. This will be followed (...) up by an introduction of some central concepts in Merleau-Ponty’s own understanding of experience with emphasis on their relevance for educational analysis. This way of presenting the theory of embodied experience has the advantage of being able to indicate the difference it makes in the field of theories of experience. (shrink)

The tissue biobanking of specific biological residual materials, which constitutes a useful resource for medical/scientific research, has raised some ethical issues, such as the need to define which kind of consent is applicable for biological residual materials biobanks.

Starting research -- Enrolling research participants -- Protecting research participants -- Conducting research with vulnerable populations -- Balancing clinical research and clinical care -- Navigating interpersonal difficulties -- Ending research.

This paper focuses on the contribution of meta-regulation in responding to the regulatory needs of a field beset by significant uncertainties concerning risks, benefits and development trajectories and characterised by fast development. Meta-regulation allows regulators to address problems when they lack the resources or information needed to develop sound “discretion-limiting rules”; meta-regulators exploit the information advantages of those actors to be regulated by leveraging them into the task of regulating itself. The contribution of meta-regulation to the governance of nanotechnologies is (...) assessed in terms of responsibilisation. Responsibilisation is regarded as a pre -requisite for regulatory actors to internalise social values (such as consumer safety and occupational health) and to ensure that these values are built into regulatory practice. In order to explore the potential of responsibilisation, the Code of Conduct for Responsible Nanosciences and Nanotechnologies Research launched by the European Commission in 2008 is evaluated. The Code is a good case of meta-regulation that aims to steer the self-regulation of nanotechnological business and research organisations. The paper concludes that, while efforts were made on the part of meta-regulators and self-regulators to contribute to responsibilisation, important opportunities for responsibilisation such as dissemination and promotion of the Code, trust-building activities, and failure to provide rewards, incentives and stakeholder guidance were not taken up. In order to foster responsibilisation within the meta-regulatory instrument of the EC Code, a number of crucial activities to be undertaken by meta-regulators are recommended. (shrink)

The role of the Research Ethics Committee (REC) in the design, conduct and dissemination of scientific research is still evolving and many important questions remain unanswered. Hence, the aim of this paper is to address some of the uncertainty that exists around the role and responsibilities of RECs and to discuss some of the controversy that exists over the criteria that RECs should follow when evaluating a research proposal. The discussion is organised around five of the major (...) roles currently performed by RECs when assessing proposals in the biomedical sciences. It will be shown that these five roles need to be critically evaluated and reassessed. The five roles addressed are: assessing the legitimacy and validity of the informed consent process, second, conducting a comprehensive risk/benefit analysis, third, assessing the validity of a research proposal, fourth, ensuring that researchers observe the social norms, values, customs, traditions and laws that prevail in the community or jurisdiction in which the research will be conducted and finally, monitoring the research project as it unfolds and providing an ongoing advisory and consultancy service to both new and experienced researchers. In reassessing the role of the REC, this paper concludes with a set of general recommendations for RECs. These provide some guidance on the minimum criteria that should be followed when RECs evaluate proposals. These guidelines will be beneficial for new and experienced members of REC, and will help to make the process a more objective, efficient and standardised process. The guidelines will also be beneficial for researchers in the biomedical sciences who are preparing proposals for ethical review. (shrink)

All investigators funded by the National Institutes of Health are now required to receive training about the ethics of clinical research. Based on a course taught by the editors at NIH, Ethical and Regulatory Aspects of Clinical Research is the first book designed to help investigators meet this new requirement. The book begins with the history of human subjects research and guidelines instituted since World War II. It then covers various stages and components of the clinical trial (...) process: designing the trial, recruiting participants, ensuring informed consent, studying special populations, and conducting international research. Concluding chapters address conflicts of interest, scientific misconduct, and challenges to the IRB system. The appendix provides sample informed consent forms. This book will be used in undergraduate courses on research ethics and in schools of medicine and public health by students who are or will be carrying out clinical research. Professionals in need of such training and bioethicists also will be interested. (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)

Machine generated contents note: Preface; 1. Introduction; 2. The savior of capitalism: the power of economic discourse; 3. The mentors of the Holocaust and the power of race science; 4. Protectors of nature: the power of climate change research; 5. Conclusion; Bibliography.

This volume provides concise and accessible guidance on how to conduct qualitative research in human geography. It gives particular emphasis to examples drawn from social/cultural geography, perhaps the most vibrant area of inquiry in human geography over the past decade.