White gold

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Guinea Pigging in Philadelphia

On June 16, 2001, the national press first reported the death of Ellen Roche, a healthy 24-year-old who volunteered for an asthma study at Johns Hopkins University. The story revealed that a few days into the trial she felt very sick, was discharged, and sent home. Within some hours she checked into the emergency room at a local hospital and fell into a coma. Ellen remained in this state until her death a month later. She had received $375 for participating in seven to nine sessions as an outpatient in the clinical drug study that resulted in her death. This tragedy exposed real gaps in our understanding of human subjects in medical research. Although bioethicists have focused on the ethics of paying subjects to test drug safety, less attention has been paid to who the healthy paid subjects are, what motivates them, how they make decisions about joining a trial, or the effects money has in the way they perceive and deal with risk. The pharmaceutical industry is one of the most globalized and profitable businesses in the United States. Anthropologists have been exploring—particularly in this last decade—different aspects of the industry, from the influence of drug reps on medical prescription practices, to the globalization of clinical trials. Yet the participation of healthy paid subjects selling their bodies in the first phase of drug development has remained all but invisible. The lack of control and oversight of Phase I Trials and in subsequent phases of drug development might not only endanger professional research subjects and trial participants, but might also compromise the public health and well-being of us all

THE ROLE OF THE BROKER IN MIXED-METHODS COLLABORATION: A CASE STUDY OF SOCIAL NETWORKS AND RISK PRACTICES AMONG PEOPLE WHO INJECT DRUGS IN THE RURAL UNITED STATES

One of the most recent innovations in social epidemiology is the combination of epidemiological data collection with ethnographic fieldwork in order to produce algorithmic models that estimate rates of disease prevalence over time. This paper uses a case study about a multi-year study of social networks and risk among people who inject drugs (PWID) in a rural community in the US to document the challenges raised by this form of knowledge production. As the anthropologist in charge of overseeing data collection, I had a privileged position to reflect on the tensions inherent in mixed-methods collaboration in health research. The research design relied on a combination of respondent-driven sampling (N=315) of active injectors with the elaboration of “micro-ethnographic network essays” to map social networks and risk practices. One burden of such mixedmethods collaboration is that highly specialized disciplinary knowledge makes it extremely difficult for all parties to have more than a superficial understanding of each field, which can increase the potential for conflicts and misunderstandings. In addition, mixed-methods projects often have to address the inter-team tensions resulting from the higher prestige and rewards awarded to quantitative modes of reasoning. Based on this case study and following the literature on actor network theory, I argue that successful collaboration in such a multimethods research depends on whether a team member can assume the role of a cultural broker, someone who is knowledgeable in the intricacies of both qualitative and quantitative methods, and thus able to act as a translator. (1-page summary

Organs Watch: Possibilities and Perils for Public Anthropology

Recent technological advances in biomedicine have introduced new therapeutic possibilities but have also contributed to the emergence of a global market for human bodies and body parts. For example, artificial modes of human reproduction created a market for eggs, semen, and surrogate wombs. In addition, organ transfer generated a demand for kidneys and half livers. The whole body has become a valuable commodity as professional research subjects venture into the economy of Phase I Clinical Trials, testing drug safety for pharmaceutical companies. In the process, the trade has become a deeply unequal one in which poor, vulnerable, and easily exploited women and men, in the United States and, increasingly, in the global south, exchange their bodies for cash. Yet, these economic transactions are often obscured by buyers—either individuals or corporations— frequently using the language of donation, voluntarism, and “gift” giving. This unjust and exploitative trade is one that anthropologists have documented and denounced since its inception in the 1990s. Few were more forceful in understanding the forces behind body commodification and in opposing the most abusive aspects of this trade than anthropologist Nancy Scheper-Hughes. As an author, Scheper-Hughes has documented the ideologies, institutions, and social networks behind organ trafficking, one of the most egregious examples of bodily commerce. More than a decade of dedicated ethnographic research has allowed Scheper-Hughes to follow these transactions, leading her to Israel, Turkey, Brazil, South Africa, Western Europe, and the United States, among other sites. In Malinowskian fashion, she has uncovered the circulation of organs and other body parts: “In general, the flow of organs, tissues, and body parts follows the modern routes of capital: from South to North, from third to first world, from poor to rich, from black and brown to white, and from female to male bodies,” she writes (Scheper-Hughes 2001). According to Scheper-Hughes, organ trafficking both illuminates and exacerbates existing social and racial inequalities. For example, a kidney from a Brazilian slum dweller costs 2,000 dollars while a kidney from an Israeli seller can be priced ten times higher (Scheper-Hughes and Wacquant 2004)

Migration to the US among rural Puerto Ricans who inject drugs: influential factors, sources of support, and challenges for harm reduction interventions

Background: While PWID of Puerto Rican origin have been migrating to the US for decades, the range of factors influencing their migration to the US and the resources they draw on to do so are not well understood. This is particularly true for rural Puerto Rican PWID, and the present study is the first empirical research to document migration patterns among this population. The specificities of their migration raise important challenges that need to be documented in order to implement more effective harm reduction policies at home (Puerto Rico) and abroad (US). Methods: This paper draws from data obtained employing a modified NHBS survey which was administered to (N =296) PWID in four rural municipalities of Puerto Rico with participants 18 years or older. The primary dependent variables for this paper are the number of times a person has lived in the continental US, and if they are planning on moving to the continental US in the future. Results: Findings suggest that 65% of the sample reported ever lived in the US and that 49% are planning on moving in the future. The number of times living in the US is associated with higher education and older age, but not with self-reported positive HIV or HCV statuses. Planning to move to the US is associated with knowing PWID who have moved or plan to move, negatively associated with age, and is not associated with HIV or HCV status. Around one-third of those that lived in the US reported having some sort of support, with the majority receiving support from family sources. No participant received help to enter HIV/HCV treatment. Conclusions: A multi-region approach to prevention is required to make a dent in curbing HIV/HCV transmission in this population. Understanding PWID migration patterns, risk behaviors, and health care needs in the US is now more important than ever as natural disasters prompted by human-made climate change will only increase in the future, raising demands not only for service providers but also harm reduction policies to cope with an increasing influx of “climate refugees” as PWID move across national borders

Exploiting a Research Underclass in Phase 1 Clinical Trials

In November 1996, the Wall Street Journal reported that Eli Lilly was paying homeless alcoholics from a local shelter to participate in safety testing of new drugs at its trial site in Indianapolis.1 “These individuals want to help society,” asserted Lilly’s director of clinical pharmacology. The subjects, however, said they took part for easy money and free room and board. Although Lilly reportedly offered the lowest per diem in the business, it managed to attract poor subjects from all over the country.1 The medical director of the local Homeless Initiative Program said Lilly had created a “shadow economy” of paid human subjects. Today, the Lilly episode seems like an early warning about an emerging set of ethical problems. Over the past decade, clinical trials have moved from universities to private testing sites, the pressure to recruit subjects quickly has intensified, and ethical oversight has been outsourced to for-profit institutional review boards (IRBs). Payment to subjects has escalated, creating “shadow economies” in cities throughout North America and elsewhere. In 2005, Bloomberg Markets reported that SFBC International, a contract research organization, was paying immigrants to participate in drug trials under ethically questionable conditions in a dilapidated Miami motel. A few months later, nine apparently previously healthy subjects at an SFBC subsidiary in Montreal contracted latent tuberculosis during a trial of an immunosuppressant. In 2006, six healthy subjects required intensive care in a phase 1 trial of a monoclonal antibody at a London facility run by the contract research organization Parexel. For all the ethical debate over these cases, however, few commentators have addressed the most troubling question: Is it ethically problematic to pay poor people to test the safety of new drugs

‘‘We can wipe an entire culture’’: Fears and promises of DNA biobanking among Native Americans

This paper explores Native American perceptions on DNA biobanking. A qualitative study was conducted among self-declared Native Americans living off reservation in two Midwest cities. Findings demonstrate a paradox: Informants maintain strong hopes for the transformative power of gene-based research while voicing very particular social anxieties. Emerging genomic technologies elicit concerns over the potential for genetic stigmatization or discrimination based on race, preventing access to health insurance or employment. Frequently, social anxieties adopt the narrative form of conspiracy theories which portray powerful agents exploiting or abusing a disenfranchised population. We argue that while Native Americans do not have a monopoly on the production of conspiracy narratives, their anxieties originate in a unique set of historical and social circumstances that position genetics research as part of a much larger political narrative. We conclude by suggesting that tribal approaches to biomedical research and in particular the use of biobanks that use concepts such as ‘‘DNA on loan’’ and emphasize trust building, collaboration and benefit sharing present a good model to deal with some of the anxieties elicited in this research but could also be taken as a model for biobank governance in general

“Money Helps”: People who inject drugs and their perceptions of financial compensation and its ethical implications

This study documents how people who inject drugs (PWID) in rural Puerto Rico perceive payments for participating in HIV epidemiological studies. In-depth interviews were conducted among a subset (n = 40) of active PWID older than 18 years of age who had been previously enrolled in a much larger study (N = 360). Findings suggest that financial compensation was the main motivation for initially enrolling in the parent study. Then, as trust in the researchers developed, participants came to perceive compensation as part of a reciprocal exchange in which they assisted researchers by providing a trustful account of their experiences and researchers reciprocated with financial support

“Money Helps”: People who inject drugs and their perceptions of financial compensation and its ethical implications

This study documents how people who inject drugs (PWID) in rural Puerto Rico perceive payments for participating in HIV epidemiological studies. In-depth interviews were conducted among a subset (n = 40) of active PWID older than 18 years of age who had been previously enrolled in a much larger study (N = 360). Findings suggest that financial compensation was the main motivation for initially enrolling in the parent study. Then, as trust in the researchers developed, participants came to perceive compensation as part of a reciprocal exchange in which they assisted researchers by providing a trustful account of their experiences and researchers reciprocated with financial support