BackgroundScientists engaged in global health research are increasingly faced with barriers to access and use of human tissues from the developing world communities where much of their research is targeted. In part, the problem can be traced to distrust of researchers from affluent countries, given the history of 'scientific-imperialism' and 'biocolonialism' reflected in past well publicized cases of exploitation of research participants from low to middle income countries.DiscussionTo a considerable extent, the failure to adequately engage host communities, the opacity of (...) informed consent, and the lack of fair benefit-sharing have played a significant role in eroding trust. These ethical considerations are central to biomedical research in low to middle income countries and failure to attend to them can inadvertently contribute to exploitation and erode trust. A 'tissue trust' may be a plausible means for enabling access to human tissues for research in a manner that is responsive to the ethical challenges considered.SummaryPreventing exploitation and restoring trust while simultaneously promoting global health research calls for innovative approaches to human tissues research. A tissue trust can reduce the risk of exploitation and promote host capacity as a key benefit. (shrink)

The generation of evidence is integral to the work of public health and health service providers. Traditionally, ethics has been addressed differently in research projects, compared with other forms of evidence generation, such as quality improvement, program evaluation, and surveillance, with review of non-research activities falling outside the purview of the research ethics board. However, the boundaries between research and these other evaluative activities are not distinct. Efforts to delineate a boundary – whether on grounds of primary purpose, temporality, underlying (...) legal authority, departure from usual practice, or direct benefits to participants – have been unsatisfactory. (shrink)

Introduction: Variation across research ethics boards in conditions placed on access to medical records for research purposes raises concerns around negative impacts on research quality and on human subject protection, including privacy.Aim: To study variation in REB consent requirements for retrospective chart review and who may have access to the medical record for data abstraction.Methods: Thirty 90-min face-to-face interviews were conducted with REB chairs and administrators affiliated with faculties of medicine in Canadian universities, using structured questions around a case study (...) with open-ended responses. Interviews were recorded, transcribed and coded manually.Results: Fourteen sites required individual patient consent for the study to proceed as proposed. Three indicated that their response would depend on how potentially identifying variables would be managed. Eleven sites did not require consent. Two suggested a notification and opt-out process. Most stated that consent would be required if identifiable information was being abstracted from the record. Among those not requiring consent, there was substantial variation in recognising that the abstracted information could potentially indirectly re-identify individuals. Concern over access to medical records by an outside individual was also associated with requirement for consent. Eighteen sites required full committee review. Sixteen allowed an external research assistant to abstract information from the health record.Conclusions: Large variation was found across sites in the requirement for consent for research involving access to medical records. REBs need training in best practices for protecting privacy and confidentiality in health research. A forum for REB chairs to confidentially share concerns and decisions about specific studies could also reduce variation in decisions. (shrink)

Silencing is a speech-related harm. We here focus on one particular account of silencing offered by Jennifer Hornsby and Rae Langton. According to this account, silencing is systematically generated, illocutionary-communicative failure. We here raise an apparent challenge to that account. In particular, we offer an example—the drowning case—that meets these conditions of silencing but does not intuitively seem to be an instance of it. First, we explore several conditions one might add to the Hornsby-Langton account, but we argue that none (...) are satisfactory. Then, we further explore the systematicity condition, which is insufficiently characterized in the current literature. Although we explore several promising ways to further characterize this condition, we ultimately conclude that more work needs to be done. Consequently, because this systematicity condition is under-specified, the Hornsby-Langton account of silencing is incomplete. (shrink)

Both Bakhtin and Vygotsky, as we have seen, responded directly or indirectly to the challenge of Freud. Both attempted to account for their data without resorting to postulating an unconscious in the Freudian sense. By way of contrast, it is instructive here to recall Jacques Lacan—who, among others, has been a beneficiary of Bakhtin’s “semiotic reinterpretation” of Freud.17 Lacan’s case is intriguing, for he retains the unconscious while at the same time submitting Freudian psychoanalysis to rigorous criticism along the lines (...) of Bakhtin. By focusing attention on the dialogic word, he encourages a rereading of Freud in which the social element is crucial. As Lacan opens his essay “The Empty Word and the Full Word”:Whether it sees itself as an instrument of healing, of formation, or of exploration in depth, psychoanalysis has only a single intermediary: the patient’s Word….And every word calls for a reply.I shall show that there is no word without a reply, even if it meets no more than silence, provided that it has an auditor: this is the heart of its function in psychoanalysis.18The word is conceived as a tool not only in the external world but also of an autonomous internal world as well. And what emerges, it would seem, is a reinterpretation of the role of dialogue in the painful maturational process of the child. For Vygotsky, the child’s realization of his separateness from society is not a crisis; after all, his environment provides both the form and the content of his personality. From the start, dialogue reinforces the child’s grasp on reality, as evidenced by the predominantly social and extraverted nature of his earliest egocentric speech. For Lacan, on the contrary, dialogue seems to function as the alienating experience, the stade du miroir phase of a child’s development. The unconscious becomes the seat of all those problems that Bakhtin had externalized: the origin of personality, the possibilities of self-expression. The je-moi opposition in the mirror gives rise to that permanent for “a locus where there is constituted the je which speaks as well as he who has it speak.”19 And consequently, the Word takes on an entirely different coloration: it is no longer merely an ideological sign but a potent tool for repressing knowledge of that gap, the face in the mirror, the Other. Lacan’s celebrated inversion of Saussure’s algorithm, with the line between signifier and signified representing repression, created a powerful but ominous new role for language. The child is released from his alienating image only through discovering himself as Subject, which occurs with language; but this language will inevitably come to him from the Other. Thus speech is based on the idea of lack, and dialogue, on the idea of difference. 17. See Ivanov, “The Significance of M. M. Bakhtin’s Ideas,” p. 314.18. Jacques Lacan, “The Empty Word and the Full Word,” in Speech and Language in Psychoanalysis, ed. and trans. Anthony Wilden , p. 9.19. Lacan, from “La Chose freudienne” , quoted in Wilden, “Lacan and the Discourse of the Other,” in Speech and Language in Psychoanalysis, p. 266. Caryl Emerson, assistant professor of Russian literature at Cornell University, has translated The Dialogic Imagination, Problems of Dostoevsky’s Poetics . She is currently at work, on a study of Boris Godunov in Russian cultural history. (shrink)

The Bakhtin we know best is something of a lyricophobe and theatrophobe. This is surprising, since he loves the act of looking. His scenarios rely on visualized, collaborative communion. He cares deeply about embodiment. Does he care about the tasks that confront the actor? Not the improvising clown of carnival, but the trained artist who performs a play script on stage? In discussing these questions, this essay draws on two suggestive places in Bakhtin’s writing where he addresses the actor’s art. (...) One is from the mid-1920s; the other, is on Shakespearean tragedy. If Bakhtin has a theatrical imagination, it will be found here. His grasp of an actor “living in” to a role and his comments on the evolution of the European stage cast his better-known ideas of dialogue, comedy, seriousness and the sacred into unexpected perspective. (shrink)

BackgroundThe amount of research utilizing health information has increased dramatically over the last ten years. Many institutions have extensive biobank holdings collected over a number of years for clinical and teaching purposes, but are uncertain as to the proper circumstances in which to permit research uses of these samples. Research Ethics Boards (REBs) in Canada and elsewhere in the world are grappling with these issues, but lack clear guidance regarding their role in the creation of and access to registries and (...) biobanks.MethodsChairs of 34 REBS and/or REB Administrators affiliated with Faculties of Medicine in Canadian universities were interviewed. Interviews consisted of structured questions dealing with diabetes-related scenarios, with open-ended responses and probing for rationales. The two scenarios involved the development of a diabetes registry using clinical encounter data across several physicians' practices, and the addition of biological samples to the registry to create a biobank.ResultsThere was a wide range of responses given for the questions raised in the scenarios, indicating a lack of clarity about the role of REBs in registries and biobanks. With respect to the creation of a registry, a minority of sites felt that consent was not required for the information to be entered into the registry. Whether patient consent was required for information to be entered into the registry and the duration for which the consent would be operative differed across sites. With respect to the creation of a biobank linked to the registry, a majority of sites viewed biobank information as qualitatively different from other types of personal health information. All respondents agreed that patient consent was needed for blood samples to be placed in the biobank but the duration of consent again varied.ConclusionParticipants were more attuned to issues surrounding biobanks as compared to registries and demonstrated a higher level of concern regarding biobanks. As registries and biobanks expand, there is a need for critical analysis of suitable roles for REBs and subsequent guidance on these topics. The authors conclude by recommending REB participation in the creation of registries and biobanks and the eventual drafting of comprehensive legislation. (shrink)

In this essay I will argue that verbal dialogue, when realized successfully in a novel and measured by the tools appropriate to it, approximates that moment in real life we recognize as a “quickening of consciousness.”.

The essay juxtaposes the intellectualpreoccupations and fraught careers of two great20th-century Russian philologist-philosophers,Aleksei Losev and Mikhail Bakhtin. AlthoughLosev''s is the more crippling case, theexternal trajectory of their lives develops inrough parallel (bold, prolific productivity inthe 1920s; arrest and deportation in the1930s; slow reintegration in thepost-Stalinist era; recent revivals, cults,booms, and scandals connected with theirlegacy). What is more, the subject matterthat fascinated them often overlapped (theClassical world, the status of the Word,Dostoevsky). Still, differences overwhelm thesimilarities. The essay concludes withspeculation about these (...) two types ofphilosopher-king squandered, martyred, andelevated by their home culture. (shrink)