Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Sex determination in most organisms involves a simple binary fate choice between male or female development; the outcome of this decision has profound effects on organismal biology, biochemistry and behaviour. In the nematode C. elegans, there is also a binary choice, either male or hermaphrodite. In C. elegans, distinct genetic pathways control somatic and germline sexual cell fate. Both pathways share a common set of globally acting regulatory genes; however, germline-specific regulatory genes also participate in the decision to make male (...) or female gametes. The determination of sexual fate in the germline of the facultative hermaphrodite poses a special problem, because first sperm then oocytes are produced. It has emerged that additional layers of post-transcriptional regulation have been imposed to modulate the activities of the global sex-determining genes, tra-2 and fem-3; the balance between these activities is crucial in controlling sexual cell fate in the hermaphrodite germline. BioEssays 23:596–604, 2001. © 2001 John Wiley & Sons, Inc. (shrink)

Offering a format that is significantly different than that offered by other books, Ethical Health Care beings by asking what is meant by health and how it is achieved. The book then proceeds to explore with care and context the nature of the relationship between patients and clinicians, health care providers and the societies in which they inhabit, and finally the relationship between the health care enterprise and the international community. By emphasizing the ethical issues that arise in the broad (...) quest to foster human health, and appreciating that health is not primarily a function of medical interventions, Ethical Health Care introduces students to problems such as the international distribution of pharmaceuticals and the dangers of reemerging infections. To a far greater extent than is done traditionally, Ethical Health Care provides an interdisciplinary perspective to bioethics, relying heavily upon the teachings of economics, law, and public health. (shrink)

Traditionally, developmental psychology has been characterized by two approaches, one predominantly social and the other, cognitive. Despite this separatism, develop-mentalists have expressed the need for a better understanding of how these two facets of the person interact - a need for a better account of development within the person as a whole. However, such an integration has been difficult given the incompatibility of underlying assumptions guiding these two areas of inquiry. James Mark Baldwin's integration of social and cognitive development into (...) one theory highlights the utility of historical analyses for further progress in the field. In this paper, Baldwin's dialectical theory of personal growth is placed in historical context, highlighting similarities and differences between his approach and that taken by Piaget, and the legacy of his theory in current theory and research. The importance of self, the development of knowledge in the context of social relationships and the function of imitation are emphasized. (shrink)

A multiracial, socioeconomically diverse sample of 45 lesbians describe power relations in both satisfactory and problematic health care encounters with physicians. Whether doctors act in solidarity or dominate them is pivotal to lesbians' health care experiences. Solidarity means compassionate competence, empowering information exchange, and negotiated action. Domination takes form in the withholding of information, doomsaying, defensive dismissals, sexist comments, body sculpting, reproductive regulation, and bodily transgression.

Selected as Outstanding Academic Book by Choice magazine.

This landmark volume articulates and develops the argument that new directions in sociocultural theory are needed in order to address important issues of identity, agency, and power that are central to understanding literacy research and literacy learning as social and cultural practices. With an overarching focus on the research process as it relates to sociocultural research, the book is organized around two themes: conceptual frameworks and knowledge sources. *Part I, “Rethinking Conceptual Frameworks,” offers new theoretical lenses for reconsidering key concepts (...) traditionally associated with sociocultural theory, such as activity, history, community, and the ways they are conceptualized and under-conceptualized within sociocultural theory. *Part II, “Rethinking Knowledge and Representation,” considers the tensions and possibilities related to how research knowledge is produced, represented, and disseminated or shared—challenging the locus of authority in research relationships, asking who is authorized to be a legitimate knowledge source, for what purposes, and for which audiences or stakeholders. Employing the lens of “critical sociocultural research,” this book focuses on the central role of language and identity in learning and literacy practices. It is intended for scholars, researchers, and graduate students in literacy education, social and cultural psychology, social foundations of education, educational anthropology, curriculum theory, and qualitative research in education. (shrink)

Gap junction intercellular communication channels permit the exchange of small regulatory molecules and ions between neighbouring cells and coordinate cellular activity in diverse tissue and organ systems. These channels have short half‐lives and complex assembly and degradation pathways. Much of the recent work elucidating gap junction biogenesis has featured the use of connexins (Cx), the constituent proteins of gap junctions, tagged with reporter proteins such as Green Fluorescent Protein (GFP) and has illuminated the dynamics of channel assembly in live cells (...) by high‐resolution time‐lapse microscopy. With some studies, however, there are potential short‐comings associated with the GFP chimeric protein technologies. A recent report by Gaietta et al., has highlighted the use of recombinant proteins with tetracysteine tags attached to the carboxyl terminus of Cx43, which differentially labels ‘old’ and ‘new’ connexins thus opening up new avenues for studying temporal and spatial localisation of proteins and in situ trafficking events.1 BioEssays 24:876–880, 2002. © 2002 Wiley Periodicals, Inc. (shrink)

A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

State Medical Boards (SMBs) can take severe disciplinary actions (e.g., license revocation or suspension) against physicians who commit egregious wrongdoing in order to protect the public. However, there is noteworthy variability in the extent to which SMBs impose severe disciplinary action. In this manuscript, we present and synthesize a subset of 11 recommendations based on findings from our team’s larger consensus-building project that identified a list of 56 policies and legal provisions SMBs can use to better protect patients from egregious (...) wrongdoing by physicians. (shrink)

BackgroundResponsive neurostimulation has been utilized as a treatment for intractable epilepsy. The RNS System delivers stimulation in response to detected abnormal activity, via leads covering the seizure foci, in response to detections of predefined epileptiform activity with the goal of decreasing seizure frequency and severity. While thalamic leads are often implanted in combination with cortical strip leads, implantation and stimulation with bilateral thalamic leads alone is less common, and the ability to detect electrographic seizures using RNS System thalamic leads is (...) uncertain.ObjectiveThe present study retrospectively evaluated fourteen patients with RNS System depth leads implanted in the thalamus, with or without concomitant implantation of cortical strip leads, to determine the ability to detect electrographic seizures in the thalamus. Detailed patient presentations and lead trajectories were reviewed alongside electroencephalographic analyses.ResultsAnterior nucleus thalamic leads, whether bilateral or unilateral and combined with a cortical strip lead, successfully detected and terminated epileptiform activity, as demonstrated by Cases 2 and 3. Similarly, bilateral centromedian thalamic leads or a combination of one centromedian thalamic alongside a cortical strip lead also demonstrated the ability to detect electrographic seizures as seen in Cases 6 and 9. Bilateral pulvinar leads likewise produced reliable seizure detection in Patient 14. Detections of electrographic seizures in thalamic nuclei did not appear to be affected by whether the patient was pediatric or adult at the time of RNS System implantation. Sole thalamic leads paralleled the combination of thalamic and cortical strip leads in terms of preventing the propagation of electrographic seizures.ConclusionThalamic nuclei present a promising target for detection and stimulation via the RNS System for seizures with multifocal or generalized onsets. These areas provide a modifiable, reversible therapeutic option for patients who are not candidates for surgical resection or ablation. (shrink)

Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.

_Employment and Employee Rights_ addresses the issue of rights in the workplace. Although much of the literature in this field focuses on employee rights, this volume considers the issue from the perspective of both employees and employers. Considers the rights of both employees and employers. Discusses the moral and legal landscape and traditional assumptions about right in employment. Investigates arguments for guaranteeing rights, particularly for employees, which are derived from relational, developmental, and economic bases. Explores new dimensions of employment including (...) a model that incorporates growing workplace diversity, builds upon our understanding of the legal landscape, and expands upon our justifications for recognizing and protecting rights. (shrink)

Although the right to health is universal, many nations that honor it fail to do so in the case of non-citizen immigrants. In this essay, we argue that the reasons typically given for not extending the right to health to immigrants are without merit and that there are good reasons for nations to protect, respect and fulfill the health right of all immigrants. Contrary to the standard view, we argue that health can be understood as a global public good. Two (...) important points follow: because health is non-excludable and non-rivalrous, it is in the health interests of nations to respect, protect and fulfill immigrants’ right to health. Furthermore, meeting the health needs of immigrants is an important way for receiving nations to meet the duties that may be generated by the benefits they incur as a result of health’s global public good dimension, thus ensuring that receiving nations are not free riders. We then argue that because citizens and immigrants dwell together, nations have duties of solidarity to immigrants with respect to health. Using the insights of social psychology, we show that solidarity among diverse people is both a reasonable expectation and a morally desirable one. (shrink)

The societal and ethical impacts of emerging technological and business systems cannot entirely be foreseen; therefore, management of these innovations will require at least some ethicists to work closely with researchers. This is particularly critical in the development of new systems because the maximum degrees of freedom for changing technological direction occurs at or just after the point of breakthrough; that is also the point where the long-term implications are hardest to visualize. Recent work on shared expertise in Science & (...) Technology Studies (STS) can help create productive collaborations among scientists, engineers, ethicists and other stakeholders as these new systems are designed and implemented. But collaboration across these disciplines will be successful only if scientists, engineers, and ethicists can communicate meaningfully with each other. The establishment of a trading zone coupled with moral imagination present one method for such collaborative communication. (shrink)

This case study of unobtrusive mobilizing by Southern California Rape Crisis Center uses archival, observational, and interview data to explore how a feminist organization worked to change police, schools, prosecutor, and some state and national organizations from 1974 to 1994. Mansbridge's concept of street theory and Katzenstein's concepts of unobtrusive mobilization and discursive politics guide the analysis. SCRCC's theme of “All We Do Comes from Victims” reflects the source of its initiatives, that is, victims who came to them for help. (...) Employing strategies of discursive politics and “occupy and indoctrinate,” members used a narrative method of “storytelling” to mobilize support and produce change. Our results increase understanding of how institutionalized women's movement organizations mobilize over time as they create meaning and commitment for members and outsiders. The authors call for more research on narrative as a women's movement strategy and on feminist organizations that are situated inside institutional contexts. (shrink)

This comment on Professor ter Meulen's paper, "Solidarity and Justice in Health Care," offers additional perspectives on solidarity's importance for health. Noting the findings of social epidemiology, the paper explains that health has important public good dimensions. It is both non-rivlalrous because one person's health does not diminish another's, and it is largely determined by non-excludable access goods, including social networks, social determinants, and public health efforts. The public good dimension of health underscores the mutual dependence and shared stake that (...) people have with respect to health, and highlights the importance of coming together in solidarity for the sake of health. This is not to say that solidarity cannot also foster exclusionary tendencies; however, the recognition of mutual dependency with respect to health can foster an inclusive solidarity for the health of all people. (shrink)

The philosophy of patient-centred care has become widely embraced but its implementation is dependent on interrelated factors. A factor that has received limited attention is the role of policy tools. In Ontario, one method government can use to promote healthcare priorities is through health regulatory colleges, which set the standard of practice for health professionals. The degree to which government policy in support of patient-centered care has influenced the direction provided by health regulatory colleges to their members, and ultimately impacted (...) actual patient care, remains unclear. This study investigates the extent to which Ontario’s health regulatory colleges have provided explicit written guidance to members related to the importance of patient-centred care. It also explores applied and theoretical explanations that may further our understanding of why patient-centred care has not been more fully embraced. Findings reveal that guidance provided by Ontario’s health regulatory colleges varies widely. Institutional barriers and the choice of policy tools for disseminating government preferences may hinder full implementation of the principles of patient-centred care. More fully understanding the role health regulatory colleges’ play in facilitating the implementation of health policy will contribute positively to dialogue and to efforts to achieve positive health system reforms. (shrink)