The Tuskegee Syphilis Study is often cited as a major reason for low research participation rates among racial/ethnic minorities. We use data from a random-digit-dial telephone survey of 510 African Americans and 253 Latinos drawn from low income Los Angeles neighborhoods to investigate associations between knowledge of the study and endorsement of HIV/aids conspiracy theories. Results indicate African Americans were significantly more likely than Latinos to endorse HIV/aids conspiracy theories and were more aware of the study. Nevertheless, few Americans and (...) Latinos had ever heard of Syphilis Study suggesting that awareness is not a major factor in low participation rates. (shrink)

In 1997 President Clinton apologized to the survivors of the U.S. Public Health Service Syphilis Study. Since then, two of his recommendations have received little attention. First, he emphasized the need to remember the shameful past so we can build a better future for racial'ethnic minority populations. Second, he directed the creation in partnership with higher education to prepare training materials that would instruct biomedical researchers on the application of ethical principles to research with racial/ethnic minority populations. This article proposes (...) the inclusion of these issues in the implementation of the Affordable Care Act. It asks, What is the right or good thing to do? What are our obligations to one another? Two challenges are examined: (a) Conducting research with African Americans without knowledge of bioethics specific to this population, and (b) the ethical dilemma of conducting research that does not adequately take into account the diversity within the Black population that is a contributing factor in health disparities. Training and policy recommendations responsive to President Clinton's Apology are presented. (shrink)

This special issue addresses the legacy of the U.S. Public Health Service Syphilis Study on health reform, particularly the Affordable Care Act. This article offers readers a guide to the themes that emerge in this issue. These themes include individual consent interrelated to consequences in populations issues, need for better government oversight in research and health care, and the need for overhauling our bioethics training to develop a population-level, culturally driven approach to research bioethics. We hope the guidance offered in (...) this issue will help shape a new framework to bioethics that can be integrated into the foundation of health care reform. (shrink)

The Search for the Legacy of the USPHS Syphilis Study at Tuskegee is a collection of essays from experts in a variety of fields seeking to redefine the legacy of the infamous Tuskegee Syphilis Study. The essayists place the legacy of the study within the evolution of racial and ethnic relations in the United States. Contributors include two leading historians on the study, two former United States Surgeons General, and other prominent scholars from a wide range of fields.

This article investigates a high-profile and ongoing dilemma for healthcare professionals, namely whether the existence of a duty of care to genetic relatives of a patient is a help or a hindrance in deciding what to do in cases where a patient’s genetic information may have relevance to the health of the patient’s family members. The English case ABC v St George’s Healthcare NHS Trust and others considered if a duty of confidentiality owed to the patient and a putative duty (...) of care to the patient’s close relatives could coexist in this context. This article examines whether embracing the concept of coexisting duties could enable HCPs to respect duties in line with their clinical judgement, thereby providing legal support and clarity to professionals to allow them to provide the best possible genetics service to both the patient and their family. We argue that these dual duties, framed as a novel, composite duty to consider the interests of genetic relatives, could allow HCPs to exercise and act on their professional judgements about the relative value of information to family members, without fears of liability for negligence or breach of confidence. (shrink)

Introduction: Uncertainty is omnipresent in cancer care, including the ambiguity of diagnostic tests, efficacy and side effects of treatments, and/or patients' long-term prognosis. During second opinion consultations, uncertainty may be particularly tangible: doubts and uncertainty may drive patients to seek more information and request a second opinion, whereas the second opinion in turn may also affect patients' level of uncertainty. Providers are tasked to clearly discuss all of these uncertainties with patients who may feel overwhelmed by it. The aim of (...) this study was to explore how oncologists communicate about uncertainty during second opinion consultations in medical oncology.Methods: We performed a secondary qualitative analysis of audio-recorded consultations collected in a prospective study among cancer patients who sought a second opinion in medical oncology. We purposively selected 12 audio-recorded second opinion consultations. Any communication about uncertainty by the oncologist was double coded by two researchers and an inductive analytic approach was chosen to allow for novel insights to arise.Results: Seven approaches in which oncologists conveyed or addressed uncertainty were identified: specifying the degree of uncertainty, explaining reasons of uncertainty, providing personalized estimates of uncertainty to patients, downplaying or magnifying uncertainty, reducing or counterbalancing uncertainty, and providing support to facilitate patients in coping with uncertainty. Moreover, oncologists varied in their choice of words/language to convey uncertainty.Discussion: This study identified various approaches of how oncologists communicated uncertain issues during second opinion consultations. These different approaches could affect patients' perception of uncertainty, emotions provoked by it, and possibly even patients' behavior. For example, by minimizing uncertainty, oncologists may consciously steer patients toward specific medical decisions). Future research is needed to examine how these different ways of communicating about uncertainty affect patients. This could also facilitate a discussion about the desirability of certain communication strategies. Eventually, practical and evidence-based guidance needs to be developed for clinicians to optimally inform patients about uncertain issues and support patients in dealing with these. (shrink)

It weighs in at a bit more than five pounds; its dimensions demand a cradle. Yet this book is a handsome and welcome achievement despite its bulk. Its reproduction of the 1922 text, its maps and photos of 1904 Dublin; its list of minor characters in Ulysses; its bibliography of scholarship, both old and new; its timeline of Joyce's life, and its exemplary detailed annotations of the text: everything, harvested from the best sources, has been brought together to create the (...) largest volume dedicated to Joyce scholarship ever produced—a book that celebrates the first printing of Joyce's masterpiece. Given its weight and size, its classroom utility is likely limited; given its monumentality, it is a proper hundred-year tribute.What is wholly original about the book's contents are the essays that preface each of the eighteen episodes of the masterpiece. That Joycean scholarship grows upon itself is amply demonstrated by the sophistication and weight of learning the eighteen writers can now display. Almost fifty years have passed since Clive Hart and David Hayman edited a volume with a similar aim. Each of the new essays reveals just how much more there is now to know and say about Ulysses, how much more there is to praise in how Joyce conceived the book, how much more there is to teach, and how unlikely it is that Joycean scholarship will ever be diminished in either its curiosity or its energy. Given the increasing complexity and density of such accumulated knowledge, it is a pleasure to witness the economy and precision shown by so many of the writers. In particular, Robert Spoo's writing about “Nestor,” Maud Ellmann's writing about “Lotus Eaters,” and Vicki Mahaffey's writing about “Nausicaa” demonstrate how concision can make for valuable illumination.But there is a problem with where these essays are positioned. Coming before each of the episodes they introduce, they might condition the mind of a reader new to Ulysses to look upon those episodes as no more than demonstrations of what the scholars think. Catherine Flynn, the book's editor, emphasizes the need of such professional interpretation when she describes the plight of anyone “struggling through Ulysses” and “the key challenges facing the reader.” She is right about how hard it is for any new reader to “get” the book, but the placement of the essays is at odds with her claim that “grappling with the novel's challenges, the reader is pushed toward one of the most important rewards of reading Ulysses: thinking independently.” The prefaces may well impede the reader from thinking independently.Professor Flynn's focus on challenge and difficulty is widely shared throughout the Joycean community and has become a fundamental preoccupation in Joyce scholarship. Taking Joyce's mastery as a given, many Joyceans assume a Talmudic stance in believing, to quote Spinoza, that “the intellectual love of a thing consists in understanding its perfections.” Facing the formidable Joyce, they turn and turn again to explication. They subscribe to the dictum that the youthful Joyce himself, perhaps self-mockingly, set down: “A man of genius makes no mistake. His errors are volitional and are the portals of discovery.” But is Ulysses free of error?Fritz Senn, writing about “Ithaca,” does not put himself in opposition to Joyce but in opposition to the presumed inerrancy of Joyce. He argues that the episode displays a troubling disjunction between what Joyce intended to do in the episode and what he did. Joyce told his friend Frank Budgen that in the episode “not only will the reader know everything and know it in the baldest and coldest way, but Bloom and Stephen thereby become heavenly bodies, wanderers like the stars at which they gaze.” But readers do not, indeed, get to know all they should, or see all they should see. Senn notes that they “learn next to nothing about Bloom's mother, his birthday, or the exact nature of his father's suicide, although they do learn a lot about such things as the junk in a drawer, the Dublin water supply system, and the addresses of Dublin shops.” Senn asks: “What does the meeting of the two characters amount to? Will it change Stephen so that he might become the author of the book he is in? Does Bloom find a son? Does he become the father that Stephen is supposed to be looking for? The impassive episode does not seem to answer, or to care.” But these are questions about which many a reader might care.Joyce named “Ithaca” as his favorite among the episodes. Senn demonstrates by his care and attentiveness that he too admires it. But by not limiting himself to dutiful reverence, he instead critically examines the Joycean text. His tribute to Joyce is both unsparing and generous.Equally attentive and yet incisive is Katherine O'Callaghan in her examination of “Sirens.” She recognizes the experimental daring of Joyce's strategy of “conveying music through language” in that episode. But her analysis, as penetrating as it is learned, does not leave the reader persuaded that the episode is entirely successful. As she observes, “the reluctance of the musical art to bend to the critical written voice” is a “stumbling block.”Another problematic experiment, “Oxen of the Sun,” which Joyce himself described as “the most difficult episode... both to interpret and to execute,” presents its commentator, Sarah Davison, with the task of explaining how its grandiose mixture of parody, plagiarism, and sheer celebration of myriad English prose styles over the centuries can function without, as she says, “wrongfooting and dissatisfying readers” who assume that the episode “enacts a historical progression only to find themselves disorientated by so many different echoes and cadences.”Were Joycean scholars more devoted to critical judgment than to explication—even when they are faced with the spectacular imposition of genius—the common reader would more likely find fellowship, and less intimidation, when reading a book that is not a sacred text but a human document, written with the extraordinary self-imposed challenges, as well as the problematic results, that only a most extraordinary human could make. 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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)

This paper addresses the topic of this special symposium issue: how to enhance the impact of cross-sector partnerships. The paper takes stock of two related discussions: the discourse in cross-sector partnership research on how to assess impact and the discourse in impact assessment research on how to deal with more complex organizations and projects. We argue that there is growing need and recognition for cross-fertilization between the two areas. Cross-sector partnerships are reaching a paradigmatic status in society, but both research (...) and practice need more thorough evidence of their impacts and of the conditions under which these impacts can be enhanced. This paper develops a framework that should enable a constructive interchange between the two research areas, while also framing existing research into more precise categories that can lead to knowledge accumulation. We address the preconditions for such a framework and discuss how the constituent parts of this framework interact. We distinguish four different pathways or impact loops that refer to four distinct orders of impact. The paper concludes by applying these insights to the four papers included in this special issue. (shrink)

The remember/know procedure is the most widely used method to investigate recollection and familiarity. It uses trial-by-trial reports to determine how much recollection and familiarity contribute to different kinds of recognition. Few other methods provide information about individual memory judgements and no alternative allows such direct indications of recollection and familiarity influences. Here we review how the RK procedure has been and should be used to help resolve theoretical disagreements about the processing and neural bases of components of recognition memory. (...) Emphasis is placed on procedural weaknesses and a possible confound of recollection and familiarity with recognition memory strength. Recommendations are made about how to minimise these problems including using modified versions of the procedure. The proposals here are important for improving behavioural and lesion research, and vital for brain imaging work. (shrink)

Sustainability challenges typically occur across sectoral boundaries, calling the state, market, and civil society to action. Although consensus exists on the merits of cross-sector collaboration, our understanding of whether and how it can create value for various, collaborating stakeholders is still limited. This special issue focuses on how new combined knowledge on cross-sector collaboration and business models for sustainability can inform the academic and practitioner debates about sustainability challenges and solutions. We discuss how cross-sector collaboration can play an important role (...) for the transition to new and potentially sustainability-driven business models given that value creation, delivery, and capture of organizations are intimately related to the collaborative ties with their stakeholders. Sustainable alternatives to conventional business models tend to adopt a more holistic perspective of business by broadening the spectrum of solutions and stakeholders and, when aligned with cross-sector collaboration, can contribute new ways of addressing the wicked sustainability problems humanity faces. (shrink)

BackgroundCarefully planned research is critical to developing policies and interventions that counter physical, psychological and social challenges faced by young people living with HIV/aids, without increasing burdens. Such studies, however, must navigate a ‘vulnerability paradox’, since including potentially vulnerable groups also risks unintentionally worsening their situation. Through embedded social science research, linked to a cohort study involving Adolescents Living with HIV/aids (ALH) in Kenya, we develop an account of researchers’ responsibilities towards young people, incorporating concepts of vulnerability, resilience, and agency (...) as ‘interacting layers’.MethodsUsing a qualitative, iterative approach across three linked data collection phases including interviews, group discussions, observations and a participatory workshop, we explored stakeholders’ perspectives on vulnerability and resilience of young people living with HIV/aids, in relation to home and community, school, health care and health research participation. A total of 62 policy, provider, research, and community-based stakeholders were involved, including 27 ALH participating in a longitudinal cohort study. Data analysis drew on a Framework Analysis approach; ethical analysis adapts Luna’s layered account of vulnerability.ResultsALH experienced forms of vulnerability and resilience in their daily lives in which socioeconomic context, institutional policies, organisational systems and interpersonal relations were key, interrelated influences. Anticipated and experienced forms of stigma and discrimination in schools, health clinics and communities were linked to actions undermining ART adherence, worsening physical and mental health, and poor educational outcomes, indicating cascading forms of vulnerability, resulting in worsened vulnerabilities. Positive inputs within and across sectors could build resilience, improve outcomes, and support positive research experiences.ConclusionsThe most serious forms of vulnerability faced by ALH in the cohort study were related to structural, inter-sectoral influences, unrelated to study participation and underscored by constraints to their agency. Vulnerabilities, including cascading forms, were potentially responsive to policy-based and interpersonal actions. Stakeholder engagement supported cohort design and implementation, building privacy, stakeholder understanding, interpersonal relations and ancillary care policies. Structural forms of vulnerability underscore researchers’ responsibilities to work within multi-sectoral partnerships to plan and implement studies involving ALH, share findings in a timely way and contribute to policies addressing known causes of vulnerabilities. (shrink)

Background:Women's health has received renewed attention in the last few years including health rehabilitation options for women affected by breast cancer. Dancing has often been regarded as one attractive option for supporting women's well-being and health, but research with women recovering from breast cancer is still in its infancy. Dancing with Health is multi-site pilot study that aimed to evaluate a dance programme for women in recovery from breast cancer across five European countries.Methods:A standardized 32 h dance protocol introduced a (...) range of Latin American dances presented within a sports and exercise framework with influences from dance movement therapy. Fifty-four women (M age 53.51; SD 7.99) participated in the study who had a breast cancer diagnosis 6 weeks, no indication of metastasis, or scheduled surgery/chemotherapy/radiation treatment for the duration of the intervention. Primary outcome data was collected for anthropometric and fitness measures next to cancer-related quality of life.T-tests and Wilcoxon signed ranked tests were used to establish differences pre and post intervention. Cohen's d was also calculated to determine the effect size of the intervention.Results:Statistically significant changes were found for: (i) weight, right and left forearm circumference and hip; (ii) 6 min walking, right and left handgrip, sit-to-stand and sit-and-reach; (iii) the EORTC-QLQ C30 summary score as well as the subscales of emotional and social functioning and symptoms. In all cases the direction of change was positive, while Cohen's d calculated showed that the effect of the intervention for these parameters ranged from intermediate to large.Conclusion:Changes on the above anthropometric, fitness and quality of life measures suggest that the intervention was of value to the participating women recovering from breast cancer. Results also advocate collaborative efforts across countries to further research. (shrink)

There is wide agreement that community engagement is important for many research types and settings, often including interaction with ‘representatives’ of communities. There is relatively little published experience of community engagement in international research settings, with available information focusing on Community Advisory Boards or Groups (CAB/CAGs), or variants of these, where CAB/G members often advise researchers on behalf of the communities they represent. In this paper we describe a network of community members (‘KEMRI Community Representatives’, or ‘KCRs’) linked to a (...) large multi-disciplinary research programme on the Kenyan Coast. Unlike many CAB/Gs, the intention with the KCR network has evolved to be for members to represent the geographical areas in which a diverse range of health studies are conducted through being typical of those communities. We draw on routine reports, self-administered questionnaires and interviews to: 1) document how typical KCR members are of the local communities in terms of basic characteristics, and 2) explore KCR's perceptions of their roles, and of the benefits and challenges of undertaking these roles. We conclude that this evolving network is a potentially valuable way of strengthening interactions between a research institution and a local geographic community, through contributing to meeting intrinsic ethical values such as showing respect, and instrumental values such as improving consent processes. However, there are numerous challenges involved. Other ways of interacting with members of local communities, including community leaders, and the most vulnerable groups least likely to be vocal in representative groups, have always been, and remain, essential. (shrink)

Benefit sharing in health research has been the focus of international debates for many years, particularly in developing countries. Whilst increasing attention is being given to frameworks that can guide researchers to determine levels of benefits to participants, there is little empirical research from developing countries on the practical application of these frameworks, including in situations of extreme poverty and vulnerability. In addition, the voices of those who often negotiate and face issues related to benefits in practice - frontline researchers (...) and fieldworkers - are rarely included in these debates. Against this background, this paper reports on experiences of negotiating research participation and benefits as described by fieldworkers, research participants and researchers in two community based studies. (shrink)

Race/Class/Gender otherwise known as Intersectionality is one of the most important theoretical precepts developed in the past two decades in women's and gender studies and in the social sciences and humanities. Yet the concept remains elusive and poorly understood. This book seeks to solve these problems by answering the basic questions surrounding intersectionality in prose undergraduate students can understand and appreciate.

Human resource management plays an important role for an organization’s sustainability endeavor. This paper attempts to provide a concise overview of the sustainability in HRM in Japanese overseas subsidiaries. The purpose of this paper is to examine two branches of business from a major Japanese multinational corporation in Hong Kong and identify the nature of sustainability in HRM in these two operations. It draws on qualitative interview data from a sample of 20 Japanese and locally hired employees and two HR (...) directors working in these two case companies with a total of 80 stories and two company interviews. A conceptual framework of sustainable HRM based on the Respect Openness Continuity model is used to examine sustainable HRM in the two Japanese subsidiaries. The results show that sustainability in HRM differs between these two case companies even though they are operated under the same Japanese headquarters. Distinctive stratified patterns of sustainability in HRM are found among the respondents in both case companies, and the nature of sustainability in HRM in these two case companies varies from each other to a large extent. The analysis of the interview data provides insight of how cultural, sectoral, and institutional factors have led to the different stratified pattern and nature of sustainability in HRM in these Japanese overseas subsidiaries. Further larger-scale research needs to be done on the case headquarters in Japan, and multinational corporations of other national origins to discover more about the patterns and nature of sustainability in HRM in a global context. (shrink)

Shani Mootoo's Cereus Blooms at Night demonstrates how willful and strategic epistemologies of ignorance intertwine. By rejecting a compartmentalized approach to domination, Mootoo highlights the disjuncture between idealized images of family, home, love, and the Caribbean and traumatic events of personal and cultural history. Mootoo not only asks readers to take up resistant questioning, argues May, but also to recognize that epistemology must acknowledge unspeakable and silenced stories to adequately account for multiple ways of knowing.

To flesh out love's potential for transformative imaginaries and politics, it is important to explore earlier examples of Black feminist theorizing on love. In this spirit, I examine Anna Julia Cooper, an early Black feminist educator, intellectual, and activist whose work is generally overlooked in feminist and anti-racist thinking on love, affect, and social change. Contesting narrow readings of Cooper, I first explore how critics might engage in more “loving” approaches to reading her work. I then delineate some of her (...) contributions to a Black feminist love-politics. In unmasking dominance enacted in love's name, Cooper analyzes romantic love, marriage, and gendered care-work in the domestic sphere. Using an intersectional lens, she contests gendered-raced hierarchies and links normative masculinity and femininity with white supremacy, xenophobia, and imperial rule. Cooper also extolls the possibilities of love rooted in nonhierarchical, intersubjective cooperation: such loving has the potential to transform interpersonal relations and foster broad collaborative action to eradicate inequality, locally and globally. Structural subjection, internalized oppression, and colonized imaginations have no part in Cooper's reciprocal, political love-force. Unfortunately, her ideas about transforming gender relations, contesting racism, challenging imperialism, seeking decolonized selves, and pursuing solidarity as a loving political orientation remain relatively unknown. (shrink)

To flesh out love's potential for transformative imaginaries and politics, it is important to explore earlier examples of Black feminist theorizing on love. In this spirit, I examine Anna Julia Cooper, an early Black feminist educator, intellectual, and activist whose work is generally overlooked in feminist and anti-racist thinking on love, affect, and social change. Contesting narrow readings of Cooper, I first explore how critics might engage in more “loving” approaches to reading her work. I then delineate some of her (...) contributions to a Black feminist love-politics. In unmasking dominance enacted in love's name, Cooper analyzes romantic love, marriage, and gendered care-work in the domestic sphere. Using an intersectional lens, she contests gendered-raced hierarchies and links normative masculinity and femininity with white supremacy, xenophobia, and imperial rule. Cooper also extolls the possibilities of love rooted in nonhierarchical, intersubjective cooperation: such loving has the potential to transform interpersonal relations and foster broad collaborative action to eradicate inequality, locally and globally. Structural subjection, internalized oppression, and colonized imaginations have no part in Cooper's reciprocal, political love-force. Unfortunately, her ideas about transforming gender relations, contesting racism, challenging imperialism, seeking decolonized selves, and pursuing solidarity as a loving political orientation remain relatively unknown. (shrink)

PurposeIf an individual has been blind since birth due to a treatable eye condition, ocular treatment is urgent. Even a brief period of visual deprivation can alter the development of the visual system. The goal of our structured scoping review was to understand how we might better support children with delayed access to ocular treatment for blinding conditions.MethodWe searched MEDLINE, Embase and Global Health for peer-reviewed publications that described the impact of early and extended bilateral visual deprivation.ResultsOf 551 reports independently (...) screened by two authors, 42 studies met our inclusion criteria. Synthesizing extracted data revealed several trends. The data suggests persistent deficits in visual acuity, contrast sensitivity, global motion, and visual-motor integration, and suspected concerns for understanding complex objects and faces. There is evidence for resilience in color perception, understanding of simple shapes, discriminating between a face and non-face, and the perception of biological motion. There is currently insufficient data about specific habilitation strategies to update low vision services, but there are several insights to guide future research in this domain.ConclusionThis summary will help guide the research and services provision to help children learn to see after early and extended blindness. (shrink)

Taking up Kimberlé Crenshaw's conclusion that black feminist theorists seem to continue to find themselves in many ways “speaking into the void” (Crenshaw 2011, 228), even as their works are widely celebrated, I examine intersectionality critiques as one site where power asymmetries and dominant imaginaries converge in the act of interpretation (or cooptation) of intersectionality. That is, despite its current “status,” intersectionality also faces epistemic intransigence in the ways in which it is read and applied. My aim is not to (...) suggest that intersectionality cannot (or should not) be critiqued, nor do I maintain that celebratory applications/interpretations are immune from epistemic distortion when it comes to interpreting intersectionality. Rather, my goal is to demonstrate that critiques of intersectionality are one important site to examine hermeneutic marginalization and interpretive violence; the politics of citation; and the impact of dominant expectations or established social imaginaries on meaning-making. In so doing, I aim to consider more fully how entrenched ways of thinking are frequently relied upon to interpret and critique intersectionality, even as these are often the very frameworks that intersectionality theorists have identified as highly problematic tools of misrepresentation, erasure, and violation. This slippage away from intersectionality's outlooks, whether in critical or laudatory contexts, is a pivotal site of epistemic negotiation we must examine more closely. (shrink)

Almost all biomedical research to date has relied upon mean measurements from cell populations, however it is well established that what it is observed at this macroscopic level can be the result of many interactions of several different single cells. Thus, the observable macroscopic ‘average’ cannot outright be used as representative of the ‘average cell’. Rather, it is the resulting emerging behaviour of the actions and interactions of many different cells. Single‐cell RNA sequencing (scRNA‐Seq) enables the comparison of the transcriptomes (...) of individual cells. This provides high‐resolution maps of the dynamic cellular programmes allowing us to answer fundamental biological questions on their function and evolution. It also allows to address medical questions such as the role of rare cell populations contributing to disease progression and therapeutic resistance. Furthermore, it provides an understanding of context‐specific dependencies, namely the behaviour and function that a cell has in a specific context, which can be crucial to understand some complex diseases, such as diabetes, cardiovascular disease and cancer. Here, we provide an overview of scRNA‐Seq, including a comparative review of emerging technologies and computational pipelines. We discuss the current and emerging applications and focus on tumour heterogeneity a clear example of how scRNA‐Seq can provide new understanding of a complex disease. Additionally, we review the limitations and highlight the need of powerful computational pipelines and reproducible protocols for the broader acceptance of this technique in basic and clinical research. (shrink)

Advance care directives for health care have been promoted as a way to improve end-of-life decision making. These documents allow a patient to state, in advance of incapacity, the types of medical treatments they would like to receive, to name a surrogate to make those decisions, or to do both. Although studies have shown that both physicians and patients generally have positive attitudes about the use of these documents, relatively few individuals have actually completed one.What underlies this discrepancy between attitudes (...) and behavior with regard to advance care directives? One obvious explanation is lack of access. Emanuel et al. estimated that approximately 90 percent of the population desire an advance care directive, and they pointed to access as the major barrier. Yet interventions that increase accessibility have typically failed to yield more than a 20 percent completion rate. Thus, it appears that access is not the sole determinant of advance care directive completion. (shrink)