Understanding Occupational Injury and Substance Use Issues among Workers in the Shellfish and Lobster Industries

In 2022, American lobster (Homarus americanus) and softshell clam (Mya arenaria) harvests contributed $283 million to Downeast Maine’s economy, employing thousands of harvesters. Harvesting is grueling work. Pain from work-related injuries precedes most opioid deaths, and workers in fisheries are disproportionately at risk. Harvesters are typically self-employed and often uninsured or underinsured, complicating access to care. Prior studies have focused on injury risk or drug use among harvesters without revealing how injury, pain and substance use intertwine with cultural, social and regulatory factors. This study examined the socio-ecologically embedded injury/ pain/ substance use process with surveys of harvesters (n=106) and healthcare providers and advocates (n=31) followed by interviews of harvesters (n=13) and providers (n=8). We found that harvesters are extremely prone to injury from myriad causes. Shellfish harvesters were more injury-prone and socially vulnerable than lobster harvesters. Deferral of care, problems with healthcare access, age, lack of cultural competency among healthcare providers, and challenges with financial stability were linked to poor outcomes. Interviewees shared many anecdotes of addiction and overdose stemming from injury. Self-medication with substances other than opioids was also prevalent, indicating widespread pain-related challenges. Participants reported family disruption and incarceration related to substance use disorder, and common comorbidities included hepatitis-C, HIV and organ failure. Consultation with community partners yielded recommendations to support health and keep Maine\u27s fisheries afloat, including community-embedded healthcare services, fisheries policy arrangements that reduce injury risk and incentivize health, financial education for managing boom and bust cycles, and expanded insurance programs

Ongoing Crisis: Managing HIV as a Chronic Condition in Biomedicalized Bureaucracies

Formerly a critical diagnosis, in the U.S. HIV is now classified as a chronic disease that can be survived and managed. From the early days of the AIDS crisis in the 1980s through the HAART (Highly Active Antiretroviral Treatments) era, HIV has remained an expensive illness. Many of the costs have been born by the public health systems of U.S. cities and states as well as the federal HIV program named for pioneering AIDS icon, Ryan White. In the mid-1990s, expensive but effective pharmaceutical HIV treatments called HAART became widely available through public and private health insurance in the U.S. Over the same time, cost containment strategies restructured US healthcare, and today inequalities remain entrenched in HIV health systems across the US and beyond. In this dissertation, I ask how and for whom HIV becomes “potentially chronic” and definitely expensive in the midst of US healthcare reforms. The biomedical and bureaucratic re-classifications of HIV as a chronic illness provide a case for examining how the problem of healthcare costs becomes linked to the bodies and lives of people and particular populations: What are the embodied and institutional consequences of HIV becoming a “life-long” disease? I ask what it means for HIV to be defined, managed and experienced as a chronic illness in U.S. healthcare and policy and what is at stake in this re-classification. In the context of managing costs and chronic conditions simultaneously, who has access to experiencing HIV as a chronic condition? How, why, and through what processes is this chronicity achievable for some people? Based at a San Francisco HIV clinic, an early epicenter of the HIV/AIDS epidemic that later became a hub of biomedical research and global model for HIV care, I ethnographically traced how patients and staff are navigating biomedical bureaucracies and health insurance markets as they attempt to obtain and provide healthcare. With an historical and ethnographic account of recent U.S. health care reform and its on-the-ground implementation at San Francisco General Hospital’s HIV Outpatient HIV Clinic (Ward 86), I examine the production of chronicity as a state of ongoing illness or managed life. My data include: ethnographic observations, interviews with people living with HIV, healthcare providers and program administrators, and analysis of policy documents and archival materials. Drawing from theoretical traditions across racial theory, science and technology studies and medical sociology, I use my ethnographic reflections as a lens on the politics of insurance, healthcare finance, and personal health information within the context of stratified citizenship and speculative biocapitalism in the U.S

“Doing Good” in U.S. Cancer Genomics? Valuation practices across the boundaries of research and care in rural community oncology

Genomic Tumour Testing (GTT) is an emerging site of “experimental care” in oncology [Cambrosio, Alberto, Peter Keating, Etienne Vignola-Gagné, Sylvain Besle, and Pascale Bourret. 2018a. “Extending Experimentation: Oncology’s Fading Boundary Bbetween Research and Care.” New Genetics and Society 37 (3): 207–226. doi: 10.1080/14636778.2018.1487281]. Few efforts to implement GTT have reached community oncology practices or patients living in rural communities within the US. Drawing on interdisciplinary research on a state-wide cancer genomics initiative in the rural US state of Maine, this paper explores the valuation practices within community oncologist and cancer stakeholders accounts of “doing good” within genomic science and care. We contribute to STS literatures on the bio-economy by highlighting the affective dimensions of strategies for managing economic and non-economic values. Clinician and stakeholders negotiated de-economizing and capitalizing modes of doing good as they built local genomic platforms “for Maine.” These situated modes of doing good and feeling good via cancer genomics shaped how they navigated the ethical ambiguities of US biomedical markets across the boundaries of research and care

Race and ancestry in the age of inclusion: technique and meaning in post-genomic science.

This article examines how race and ancestry are taken up in gene-environment interaction (GEI) research on complex diseases such as heart disease, diabetes, and cancer. Using 54 in-depth interviews of 33 scientists and over 200 hours of observation at scientific conferences, we explore how GEI researchers use and interpret race, ethnicity, and ancestry in their work. We find that the use of self-identified race and ethnicity (SIRE) exists alongside ancestry informative markers (AIMs) to ascertain genetic ancestry. Our participants assess the utility of these two techniques in relative terms, downplaying the accuracy and value of SIRE compared to the precision and necessity of AIMs. In doing so, we argue that post-genomic scientists seeking to understand the interactions of genetic and environmental disease determinants actually undermine their ability to do so by valorizing precise characterizations of individuals' genetic ancestry over measurement of the social processes and relations that differentiate social groups

Enacting the molecular imperative: How gene-environment interaction research links bodies and environments in the post-genomic age

Despite a proclaimed shift from 'nature versus nurture' to 'genes and environment' paradigms within biomedical and genomic science, capturing the environment and identifying gene-environment interactions (GEIs) has remained a challenge. What does 'the environment' mean in the post-genomic age? In this paper, we present qualitative data from a study of 33 principal investigators funded by the U.S. National Institutes of Health to conduct etiological research on three complex diseases (cancer, cardiovascular disease and diabetes). We examine their research practices and perspectives on the environment through the concept of molecularization: the social processes and transformations through which phenomena (diseases, identities, pollution, food, racial/ethnic classifications) are re-defined in terms of their molecular components and described in the language of molecular biology. We show how GEI researchers' expansive conceptualizations of the environment ultimately yield to the imperative to molecularize and personalize the environment. They seek to 'go into the body' and re-work the boundaries between bodies and environments. In the process, they create epistemic hinges to facilitate a turn from efforts to understand social and environmental exposures outside the body, to quantifying their effects inside the body. GEI researchers respond to these emergent imperatives with a mixture of excitement, ambivalence and frustration. We reflect on how GEI researchers struggle to make meaning of molecules in their work, and how they grapple with molecularization as a methodological and rhetorical imperative as well as a process transforming biomedical research practices

Race and Ancestry in the Age of Inclusion

This article examines how race and ancestry are taken up in gene-environment interaction (GEI) research on complex diseases such as heart disease, diabetes, and cancer. Using 54 in-depth interviews of 33 scientists and over 200 hours of observation at scientific conferences, we explore how GEI researchers use and interpret race, ethnicity, and ancestry in their work. We find that the use of self-identified race and ethnicity (SIRE) exists alongside ancestry informative markers (AIMs) to ascertain genetic ancestry. Our participants assess the utility of these two techniques in relative terms, downplaying the accuracy and value of SIRE compared to the precision and necessity of AIMs. In doing so, we argue that post-genomic scientists seeking to understand the interactions of genetic and environmental disease determinants actually undermine their ability to do so by valorizing precise characterizations of individuals' genetic ancestry over measurement of the social processes and relations that differentiate social groups

The Ethics of Translational Science: Imagining Public Benefit in Gene-Environment Interaction Research.

Biomedical research is increasingly informed by expectations of "translation," which call for the production of scientific knowledge that can be used to create services and products that improve health outcomes. In this paper, we ask how translation, in particular the idea of social responsibility, is understood and enacted in the post-genomic life sciences. Drawing on theories examining what constitutes "good science," and interviews with 35 investigators who study the role of gene-environment interactions in the etiology of cancer, diabetes, and cardiovascular disease, we describe the dynamic and unsettled ethics of translational science through which the expected social value of scientific knowledge about complex disease causation is negotiated. To describe how this ethics is formed, we first discuss the politics of knowledge production in interdisciplinary research collectives. Researchers described a commitment to working across disciplines to examine a wide range of possible causes of disease, but they also pointed to persistent disciplinary and ontological divisions that rest on the dominance of molecular conceptions of disease risk. The privileging of molecular-level causation shapes and constrains the kinds of knowledge that can be created about gene-environment interactions. We then turn to scientists' ideas about how this knowledge should be used, including personalized prevention strategies, targeted therapeutics, and public policy interventions. Consensus about the relative value of these anticipated translations was elusive, and many scientists agreed that gene-environment interaction research is part of a shift in biomedical research away from considering important social, economic, political and historical causes of disease and disease disparities. We conclude by urging more explicit engagement with questions about the ethics of translational science in the post-genomic life sciences. This would include a consideration of who will benefit from emerging scientific knowledge, how benefits will accrue, and the ways in which normative assumptions about the public good come to be embedded in scientific objects and procedures