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

BackgroundThe potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' on (...) the ground and the challenges of community consultation.MethodsThe findings are based on action research methods, including analysis of community engagement documentation and the observations of the authors closely involved in their development and implementation. Qualitative and quantitative content analysis has been used for documentation of staff meetings and trainings, a meeting with 24 community leaders, and 40 large public and 70 small community group meetings. Meeting minutes from a purposive sample of six community representative groups have been analysed using a thematic framework approach.ResultsField workers described challenges around misunderstandings about research, perceived pressure for recruitment and challenges in explaining the study. During consultation, leaders expressed support for the study and screening for sickle cell disease. In community meetings, there was a common interpretation of research as medical care. Concerns centred on unfamiliar procedures. After explanations of study procedures to leaders and community members, few questions were asked about export of samples or the archiving of samples for future research.ConclusionsCommunity engagement enabled researchers to take account of staff and community opinions and issues during the study and adapt messages and methods to address emerging ethical challenges. Field workers conducting informed consent faced complex issues and their understanding, attitudes and communication skills were key influences on ethical practice. Community consultation was a challenging concept to put into practice, illustrating the complexity of assessing information needs and levels of deliberation that are appropriate to a given study. (shrink)

Cadherin‐mediated cell‐cell adhesion is perturbed in protein tyrosine kinase (PTK)‐transformed cells. While cadherins themselves appear to be poor PTK substrates, their cytoplasmic binding partners, the Arm catenins, are excellent PTK substrates and therefore good candidates for mediating PTK‐induced changes in cadherin behavior. These proteins, p120ctn, β‐catenin and plakoglobin, bind to the cytoplasmic region of classical cadherins and function to modulate adhesion and/or bridge cadherins to the actin cytoskeleton. In addition, as demonstrated recently for β‐catenin, these proteins also have crucial signaling (...) roles that may or may not be related to their effects on cell‐cell adhesion. Tyrosine phosphorylation of cadherin complexes is well documented and widely believed to modulate cell adhesiveness. The data to date, however, is largely correlative and the mechanism of action remains unresolved. In this review, we discuss the current literature and suggest models whereby tyrosine phosphorylation of Arm catenins contribute to regulation or perturbation of cadherin function. (shrink)

This volume is a compilation of revised versions of papers presented at a conference held in spring 1994 at the Centre for Interdisciplinary Research (ZiF) in Bielefeld, Germany.

This study applies a theoretical framework, the theory of reasoned action, to the examination of unethical decision making in job-related situations encountered by CPAs. A survey methodology was employed in which respondents were asked to use both self-reported and randomized response techniques for reporting unethical behavior. The results indicate that individuals are unwilling to accurately report either unethical behavior or intention, particularly in situations where there is no question as to the unacceptability of the action or the potential penalty as (...) presented in the AICPA Code of Professional Conduct. Implications for the accounting profession and research are discussed. (shrink)

Decreasing philanthropic funding from governments and foundations and increasing social needs are putting pressure on nonprofits to generate financial resources in more entrepreneurial ways. This type of social innovation within the nonprofit sector can be facilitated through collaborative alliances with universities, corporations and other public/private partnerships. This paper presents a case study of a university partnership between Institute of Social Innovation at Carnegie Mellon University and the Pittsburgh Social Innovation Accelerator.

Background In the ethical and clinical literature, cases of parents who want treatment for their child to be withdrawn against the views of the medical team have not received much attention. Yet resolution of such conflicts demands much effort of both the medical team and parents. Objective To discuss who can best protect a child9s interests, which often becomes a central issue, putting considerable pressure on mutual trust and partnership. Methods We describe the case of a 3-year-old boy with acquired (...) brain damage due to autoimmune-mediated encephalitis whose parents wanted to stop treatment. By comparing this case with relevant literature, we systematically explored the pros and cons of sharing end-of-life decisions with parents in cases where treatment is considered futile by parents and not (yet) by physicians. Conclusions Sharing end-of-life decisions with parents is a more important duty for physicians than protecting parents from guilt or doubt. Moreover, a request from parents on behalf of their child to discontinue treatment is, and should be, hard to over-rule in cases with significant prognostic uncertainty and/or in cases with divergent opinions within the medical team. (shrink)

This paper challenges the traditional assumption that descriptive and prescriptive sciences are essentially distinct by presenting a study on the implicit normativity of the production and presentation of biomedical scientific facts within evidence-based medicine. This interdisciplinary study serves as an illustration of the potential worth of the concept of implicit normativity for bioethics in general and for integrated empirical ethics research in particular. It demonstrates how both the production and presentation of scientific information in an evidence-based decision-support contain implicit presuppositions (...) and values, which pre-structure the moral environment of the clinical process of decision-making. As a consequence, the evidence-based decision support did not only support the clinical decision-making process; it also transformed it in a morally significant way. This phenomenon undermines the assumption within much of the literature on patient autonomy that information disclosure is a conditional requirement before patient autonomy even starts; patient autonomy is already influenced during the production and presentation of information. These results imply an increased responsibility of those who produce and present evidence-based facts(i.e. scientists in general and physicians in particular). The insights of this study not only involve a different focus on both theory and practice of patient autonomy and informed consent, but they also call for a broader scope of morality than does traditional empirical research in bioethics. The concept of implicit normativity within integrated empirical ethics research calls for a strong cooperation between bioethicists and descriptive scientists, i.e., a cooperation that goes beyond the discipline-specific epistemic values and that takes place during all phases of the research process. (shrink)

Plasma protein therapies are a group of essential medicines extracted from human plasma through processes of industrial scale fractionation. They are used primarily to treat a number of rare, chronic disorders ensuing from inherited or acquired deficiencies of a number of physiologically essential proteins. These disorders include hemophilia A and B, different immunodeficiencies and alpha 1-antitrypsin deficiency. In addition, acute blood loss, burns and sepsis are treated by PPTs. Hence, a population of vulnerable and very sick individuals is dependent on (...) these products. In addition, the continued well-being of large sections of the community, including pregnant women and their children, travelers and workers exposed to infectious risk is also subject to the availability of these therapies. Their manufacture to adequate amounts requires large volumes of human plasma as the starting material of a complex purification process. Mainstream blood transfusion services run primarily by the not-for-profit sector have attempted to provide this plasma through the separation of blood donations, but have failed to provide sufficient amounts to meet the clinical demand. The collection of plasma from donors willing to commit to the process of plasmapheresis, which is not only time consuming but requires a long term, continuing commitment, generates much higher amounts of plasma and has been an activity historically separate from the blood transfusion sector and run by commercial companies. These companies now supply two-thirds of the growing global need for these therapies, while the mainstream government-run blood sector continues to supply a shrinking proportion. The private sector plasmapheresis activity which provides the bulk of treatment products has been compensating the donors in order to recognize the time and effort required. Recent activities have reignited the debate regarding the ethical and medical aspects of such compensation. In this work, we review the landscape; assess the contributions made by the compensated and non-compensated sectors and synthesize the outcomes on the relevant patient communities of perturbing the current paradigm of compensated plasma donation. We conclude that the current era of “Patient Centeredness” in health care demands the continuation and extension of paid plasma donation. (shrink)

Bijural services as factors of production -- Commentary A on Breton and Salmon -- Commentary B on Breton and Salmon -- The challenge of incomplete law and how different legal systems respond -- Commentary C on Pistor and Xu -- Commentary D on Pistor and Xu -- Coevolution as an influence in the development of legal systems -- Commentary E on Breton and Des Ormeaux -- Commentary F on Breton and Des Ormeaux -- The demand for bijurally trained Canadian lawyers (...) -- Commentary G on Davis and Trebilcock -- Commentary H on Davis and Trebilcock. (shrink)

Les conditions dans lesquelles on peut susciter expérimentalement, chez les Amphibiens, une lèvre blastoporale surnuméraire ont été rappelées. Une interprétation a été esquissée en se basant sur des recherches plus récentes de microstructure, d'embryologie moléculaire et de cytochimie.The various techniques, by which a secondary blastoporal lip can be obtained in Amphibians have been recorded. Their intelligence is more or less increased by recent information due to electromicroscopy, molecular embryology and cytochemistry.

Sweet describes the pragmatic foundations of standard logic and applies these foundations to the task of developing a theory of intended models as an extension of standard model theory in which the relevant "intending" is represented pragmatically. Methods of formal logic are used to investigate the structure of the relation between language and the world. The truism which holds that this relation includes the speaker as well as the object spoken about is formally explicated and applied to the problem of (...) illuminating one of the deepest phenomena in standard model theory: the existence of non-isomorphic models of complete theories. To this end it is shown that standard logic admits pragmatic foundations upon which a theory of intended models can be built as an extension of standard model theory. The relevant "intending" is represented by the very forms of verbal behavior which determine the grammatical and logical structure of the sentences whose referential meaning is in question. The uniqueness properties of the class of intended models may then be described. The first section of the book states the immediate goal of standard pragmatics as that of recovering the algebraic structure first-order logic by means of a purely pragmatic construction. The second section, the major portion of the work, then provides the foundation for a semiotic theory of intended models and referential meaning. The theory is then applied to the problem of referential indeterminancy, which has been associated with the phenomenon of scientific revolutions. The theory is also applied to the problem of the apparent synonymy of observationally equivalent theories. Sweet concludes that such theories are not referentially synonymous in any natural sense which is analogous to the paradigm sense in which theories of alternative scales of measurement are referentially synonymous. A novel feature of this book is the formal explication of the idea that the factors, pragmatical in nature, which distinguish the actual meaning of a sentence from among its possible meanings, whose range is defined by the manner in which the sentence is parsed, determine that very parsing. Applicability to natural language of the model-theoretic semantics thereby obtained is made possible by another feature of the book: the development of a theory of locally standard grammar which provides the foundation for representing the structure of natural language as that of standard first-order logic, in a local, as distinguished from a global, sense. This book is intended for scholars in logic, semiotics, and the philosophies of language and of science. Those concerned specifically with such philosophers as Peirce, Martin, and Davidson will also find the study valuable. (shrink)

This paper compares the ethical standards reported by consumers and managers with different attachment styles (secure, preoccupied, fearful, or dismissing). We conducted two studies of consumer ethical beliefs and a third managerial survey. In Study 1, we used a questionnaire that we constructed, and in Study 2, we used the Muncy–Vitell Consumer Ethics Scale. The results in both the studies were consistent and showed that men reported a greater indifference to ethical transgressions than women. Based on the two studies, the (...) results indicate that␣among male consumers, the dismissing participants reported the greatest overall indifference to ethical transgressions and the secure participants expressed the most ethical beliefs. The two intermediate groups did not differ significantly from each other. In Study 1, none of the women consumers reported a dismissing attachment style. Women with a secure style reported more ethical beliefs than those in the other two groups. However, the sample in Study 2 included dismissing women. The dismissing women reported the greatest overall indifference to ethical transgressions and the secure women expressed the most ethical beliefs. The illegal profit subscale described the most severe ethical transgressions, and for both men and women, the secure participants were less apt than the other participants to report a willingness to transgress. In Study 3, the Newstrom and Ruch (1975, MSU Business Topics, Winter, 31) Questionnaire was administered to 227 managers. All four attachment patterns were represented among the participants of both genders. In all cases, the participants with a dismissing attachment style showed the greatest readiness to transgress. (shrink)

This article examines the (bio) ethical and professionalism issues that may arise in the context of medical practice in low and middle income countries (LAMIC), and the challenges this poses for medical regulatory bodies in the regions, in upholding ethics in professional practice. A quadrangle of source of the problems given rise to the breach of ethics in medical practice is identified, and suggested steps, based on ethical principles and concept, is proposed towards the resolution of the problems presented. As (...) LAMIC progress to improve the health of its population, this endeavour should occur hand in hand with contemporary medical ethics theories, taking in context the region’s ethnographic and cultural beliefs and practices. (shrink)