Building a More Connected DSMB: Better Integrating Ethics Review and Safety Monitoring

Data and Safety Monitoring Boards (DSMBs) have become an increasingly common feature of clinical trial oversight, yet a paucity of legal or ethical frameworks govern these Boards’ composition or operation, or their relationship with other actors with monitoring responsibilities. This paper argues that prevailing structural gaps are impeding harmonized systems for monitoring the ongoing ethical acceptability of clinical trials. Particular tensions stem from DSMBs’ sweeping discretion in deciding whether and when to recommend that a trial should be terminated or amended based on safety and efficacy information. This discretion becomes especially challenging in light of DSMBs’ monopoly over emerging trial data, which prevents Institutional Review Boards, sponsors, and investigators from participating in certain pivotal and ethically charged decisions. To address these disconnects, I advocate for strengthened pre-trial and post-trial communication in addition to innovative strategies to support DSMB decision making through the life of a trial.     

Maternal situations: sectarianism and civility in a divided city

This paper explores the tensions between civility and sectarianism in contemporary Belfast. Drawing on interviews with mothers engaged in raising young children in the largely working‐class and divided inner city, the paper offers a situated account of the dynamics of social reproduction and change. This is pursued through an analysis of the interplay between expectations of civility and sectarianism in three situations: walking, shopping and playing. The tensions and dilemmas of maternal action as the divided inner city is navigated indicate the gendered character of civility, an important emerging norm facilitating social change in the post‐conflict era. The situation of motherhood itself, both at the centre of ethno‐national reproduction and at the interface of public and private life, is not insignificant in routinely drawing mothers into the everyday dynamics of post‐conflict continuity and change.     

Getting Involved: Exploring Latino GBT Volunteerism and Activism in AIDS and LGBT Organizations

The purpose of this article is to investigate the community involvement (e.g., volunteerism, activism) of Latino gay and bisexual men and transgender persons (GBT) in two areas: AIDS/LGBT and other general causes. Drawing from volunteering and identity theories, we explore the following: Who is likely to get involved? What factors affect variation in the levels of involvement? Where do Latino GBT participate and what do they do? Data come from a cross-sectional sample (N = 643) of Latino GBT in Chicago, Illinois, and San Francisco, California. We found high levels of involvement, but primarily focused on AIDS/LGBT. Involvement appears to be driven by income, early involvement, role modeling, and childhood stigmatization of gender nonconformity.     

Analysis of HIV Caregivers in South Africa: A South African Depression and Anxiety Group

ABSTRACT

The severity of the HIV/AIDS epidemic in South Africa is well documented. However, little is known regarding the well-being of caregivers of persons with HIV/AIDS in South Africa. This study sought to evaluate characteristics, similarities and differences between groups of HIV caregivers in rural, semi-rural, and urban areas of South Africa. Interesting trends were noticed in the areas of suicidality, alcohol abuse, and intimate trauma. Findings indicate a substantial need for further study in the area of suicidality, denial of or lack of desire to know HIV status and the accompanying diagnostic stigma, and the need for a support network within lay caregivers.     

Using student subjects in experimental research: a challenge to the practice of using students as a proxy for taxpayers

The tax discipline has accepted the practice adopted in the economics and psychology disciplines of using student subjects for experimental research purposes. However, in other social science disciplines (e.g. accounting, management or consumer research), experimental research that uses students as a substitute for another group has been widely criticised as having little external validity. In this research, data are compiled from journal articles over a 20?year period to investigate the extent to which tax experiments use student subjects and the potential implications from this practice. Three research questions are addressed. First, do tax studies using student subjects justify or explain the use of student subjects? Second, are policy recommendations or other extrapolations to the tax-paying population made from the student subject results? Third, is any acknowledgement made of the potential limitations of using student subjects? The findings indicate that approximately half of the tax experiments investigated used student subjects. Of these, approximately 80% provided no justification for their chosen subject sample. A similar proportion did not acknowledge any limitations from the use of a student sample. Around half of the papers using student subjects extrapolated their findings to the general tax-paying population or provided tax policy recommendations. In addition, the research indicates that the tax discipline has not had the same level of robust debate on the use of student subjects in experimental research as that seen in other disciplines. This potentially limits the external validity and utility of many of the tax research experiments undertaken to date.     

Insights and recommendations for recruitment and retention of low socio-economic parents with overweight children

Low socio-economic groups are typically difficult to recruit and retain in health research, which makes it difficult to investigate their health-related beliefs and behaviours. Low socio-economic parents with overweight or obese children took part in a longitudinal qualitative child obesity study over 12?months. These parents’ views of and recommendations for appropriate recruitment and retention strategies are reported. Their interpretations and suggestions are considered in the light of the difficulties that were experienced in designing the study to meet their needs and the approaches that were found to be more effective in achieving and maintaining a viable study cohort. Relevant aspects of recruitment included remuneration, recruitment locations and the use of appropriate weight-related terminology. Retention factors included protocol flexibility, ongoing remuneration and learning opportunities. Barriers to ongoing participation are also discussed. Suggestions are provided for future qualitative research with low socio-economic families.     

A Qualitative Study of Communication among Child Advocacy Multidisciplinary Team Members Using a Web-Based Case Tracking System

A qualitative study was conducted to gain information about communication among child advocacy multidisciplinary team (MDT) members when using a Web-based case tracking system. Analysis of the focus groups revealed a number of strengths and barriers. Users positively appraised aptness of the system for expediting communication and saving time. Lack of training and duplication of effort with other systems were recognized as impediments. In addition to the typical reactions to such systems, other factors, such as motivation and subjectivity, are discussed which may affect the success of such systems.     

Communality Across Time: Responding to Encounters with Maternal Encounters: The Ethics of Interruption

I am grateful to the editors and contributors for this wonderful collection of articles that respond to Maternal Encounters: The Ethics of Interruption (Baraitser, 2009 Baraitser , L. ( 2009 ). Maternal Encounters: The Ethics of Interruption . London , UK : Routledge . [Google Scholar]). Rather than restaging the arguments I made in the book, I attempt here to extend my discussion of the maternal subject as a figure that disrupts or interrupts our notions of subjectivity and ethics. Following Elisabeth Freeman, I propose that the temporality of maternal labor binds a socius that is enunciated not just by an irruption of subjectivity (the “discontinuity in the Real”) but also by an irruption of collectivity in the present tense of neoliberalism. This irruption, in other words, creates a commons, that is, the endurance of communality across time.