Experiences of moral distress in a COVID-19 intensive care unit: A qualitative study of nurses and respiratory therapists in the United States.

The COVID-19 pandemic has placed extraordinary stress on frontline healthcare providers as they encounter significant challenges and risks while caring for patients at the bedside. This study used qualitative research methods to explore nurses and respiratory therapists' experiences providing direct care to COVID-19 patients during the first surge of the pandemic at a large academic medical center in the Northeastern United States. The purpose of this study was to explore their experiences as related to changes in staffing models and to consider needs for additional support.

"How do we measure justice?": missions and metrics in urban agriculture.

This paper offers a critical analysis of program evaluation in contemporary urban agriculture. Drawing on data from an exploratory study designed at the request of and in collaboration with urban agriculture practitioners in Massachusetts, it describes both their critiques of extant practices of program evaluation and their visions for alternative ways of telling the story of their work. Related, it explores practitioners' interest in building capacity for policy advocacy, working collectively to create transformative social change, and, related, establishing new kinds of relationships with state and philanthropic funders.

Encountering the social determinants of health on a COVID-19 ICU: Frontline providers' perspectives on inequality in a time of pandemic.

Efforts to improve health equity may be advanced by understanding health care providers' perceptions of the causes of health inequalities. Drawing on data from in-depth interviews with nurses and registered respiratory therapists (RRTs) who served on intensive care units (ICUs) during the first surge of the pandemic, this paper examines how frontline providers perceive and attribute the unequal impacts of COVID-19. It shows that nurses and RRTs quickly perceived the pandemic's disproportionate burden on Black and Latinx individuals and families.

Intensive care unit nurses living through COVID-19: A qualitative study.

Aims: To understand how nurses experience providing care for patients hospitalized with COVID-19 in intensive care units.

Background: As hospitals adjust staffing patterns to meet the demands of the pandemic, nurses have direct physical contact with ill patients, placing themselves and their families at physical and emotional risk.

Methods: From June to August 2020, semi-structured interviews were conducted.

The Socio-Exposome: Advancing Exposure Science and Environmental Justice in a Post-Genomic Era.

We propose the as a conceptual framework for integrative environmental health research. Environmental scientists coined the term " with the goal of inventorying and quantifying environmental exposures as precisely as scientists measure genes and gene expression. To date, the exposome's proponents have not thoroughly engaged social scientific theoretical and methodological expertise, although the exclusion of sociological expertise risks molecularizing complex social phenomena and limiting the possibility of collective action to improve environmental conditions.

Depression and genetic causal attribution of epilepsy in multiplex epilepsy families.

Objectives: Rapid advances in genetic research and increased use of genetic testing have increased the emphasis on genetic causes of epilepsy in patient encounters. Research in other disorders suggests that genetic causal attributions can influence patients' psychological responses and coping strategies, but little is known about how epilepsy patients and their relatives will respond to genetic attributions of epilepsy. We investigated the possibility that among members of families containing multiple individuals with epilepsy, depression, the most frequent psychiatric comorbidity in the epilepsies, might be related to the perception that epilepsy has a genetic cause.

Parents' interest in genetic testing of their offspring in multiplex epilepsy families.

Objective: To evaluate parents' interest in genetic testing of their offspring in families containing multiple individuals with epilepsy.

Methods: Seventy-seven parents with affected offspring and 173 parents without affected offspring from families containing multiple individuals with epilepsy completed a questionnaire asking about their interest in genetic testing of their offspring. Interest in testing was ascertained in four scenarios defined by clinical utility and penetrance of the gene in the test (100% vs.

Gene worlds.

Drawing from a critical sociology of knowledge perspective, we situate the production of genetic information within relevant political, financial, and professional contexts. We consider as well the broad range of social conditions that render genetic knowledge salient in clinical settings and for population health. This sociological analysis of genetic knowledge highlights how genetic knowledge flourishes and shapes social environments and how in turn environments select for particular forms of genetic knowledge.

Genetic causal attribution of epilepsy and its implications for felt stigma.

Objective: Research in other disorders suggests that genetic causal attribution of epilepsy might be associated with increased stigma. We investigated this hypothesis in a unique sample of families containing multiple individuals with epilepsy.

Methods: One hundred eighty-one people with epilepsy and 178 biologic relatives without epilepsy completed a self-administered survey.

Genetic testing preferences in families containing multiple individuals with epilepsy.

Objective: To examine genetic testing preferences in families containing multiple individuals with epilepsy.

Methods: One hundred forty-three individuals with epilepsy and 165 biologic relatives without epilepsy from families containing multiple affected individuals were surveyed using a self-administered questionnaire. Four genetic testing scenarios were presented, defined by penetrance (100% vs.

What's at stake? Genetic information from the perspective of people with epilepsy and their family members.

Substantial progress has been made in identifying genes that raise risk for epilepsy, and genetic testing for some of these genes is increasingly being used in clinical practice. However, almost no empirical data are available from the perspective of people with epilepsy and their family members about the impact of genetic information and potential benefits and harms of genetic testing. To address this gap we conducted in-depth qualitative interviews with 40 individuals (22 with epilepsy, 18 unaffected) in the USA from families containing multiple affected individuals who had participated in epilepsy genetics research.

Forgetting and remembering epilepsy: collective memory and the experience of illness.

How do people with epilepsy relate to the long and troubling history of this disease? Drawing on two sets of interviews with people with epilepsy, one cohort from the mid-1970s and one from 2005 to 2006, this article examines how memories of what epilepsy has been shape the individual and collective identities of people living with epilepsy. We find striking similarities in how people in both interview cohorts talk about what epilepsy was in 'the Dark Ages', by which they refer to the recent past. Likewise, we find evidence of a collective identity among people with epilepsy.

The Politics of the Gene: Social Status and Beliefs about Genetics for Individual Outcomes.

Social scientists have predicted that individuals who occupy socially privileged positions or who have conservative political orientations are most likely to endorse the idea that genes are the root cause of differences among individuals. Drawing on a nationally representative sample of the US population, this study examines belief in the importance of genes for understanding individual differences in a series of broad domains: physical illness, serious mental illness, intelligence, personality, and success in life. We also assess whether the belief that genetics are important for these outcomes is more common among those in relatively advantaged positions or among those who are more politically conservative.

Sequencing and its consequences: path dependence and the relationships between genetics and medicalization.

Both advocacy for and critiques of the Human Genome Project assume a self-sustaining relationship between genetics and medicalization. However, this assumption ignores the ways in which the meanings of genetic research are conditional on its position in sequences of events. Based on analyses of three conditions for which at least one putative gene or genetic marker has been identified, this article argues that critical junctures in the institutional stabilization of phenotypes and the mechanisms that sustain such classifications over time configure the practices and meanings of genetic research.

Ethical, legal, and social dimensions of epilepsy genetics.

Purpose: Emerging genetic information and the availability of genetic testing has the potential to increase understanding of the disease and improve clinical management of some types of epilepsy. However, genetic testing is also likely to raise significant ethical, legal, and social issues for people with epilepsy, their family members, and their health care providers. We review the genetic and social dimensions of epilepsy relevant to understanding the complex questions raised by epilepsy genetics.

Implications of welfare reform on the elderly: a case study of provider, advocate, and consumer perspectives.

Whereas many studies of welfare reform have focused on effects on children and families, little research has examined the implications of welfare reform for the elderly. This case study incorporates interviews with service providers for the aging, members of advocacy organizations, and two focus groups of older consumers conducted in the multi-ethnic urban community of San Francisco. Study findings suggest that welfare reform has had both direct and indirect effects on the elderly and their services in the study community.

The emergence of toxicogenomics: a case study of molecularization.

This paper described the efforts of scientists at the National Institute of Environmental Health Sciences (NIEHS) and their allies in the National Toxicology Program to molecularize toxicology by fostering the emergence of a new discipline: toxicogenomics. I demonstrate that the molecularization of toxicology at the NIEHS began in a process of 'co-construction'. However, the subsequent emergence of the discipline of toxicogenomics has required the deliberate development of communication across the myriad disciplines necessary to produce toxicogenomic knowledge; articulation of emergent forms, standards, and practices with extant ones; management of the tensions generated by grounding toxicogenomics in traditional toxicological standards and work practices even it transforms those standards and practices; and identification and stabilization of roles for toxicogenomic knowledge in markets and service sites, such as environmental health risk assessment and regulation.

Locating gene-environment interaction: at the intersections of genetics and public health.

Over the past two decades, the applications of genetic and genomic technologies have begun to transform research questions and practices within epidemiology and toxicology, the "core sciences" of public health (Annu. Rev. Public Health 21 (2000) 1).