Routine,Scale,and Inequality

Introduction

I have a young acquaintance who is a munitions specialist for the US Air Force. He loads and unloads ordnance from aircraft. Upon finding out his occupation, I quipped that I guess he and his workmates can’t afford to ever have an off day. He said that they pretty much take things like the risks and procedures for handling those risks for granted, although they probably shouldn’t. Our brief interaction illustrates some key issues for rethinking questions about ethics that are touched upon in this collection of articles: routinization, scale, and inequality. Obviously, the risks and hazards of his work have become routine for this young airman. But just out of the frame of this narrative are questions about scale, that is, the microethics (Herkert 2003) of his day-to-day work are embedded in questions that engage matters of justice, professional responsibility, or macroethics (Herkert 2003). I will probably never press this acquaintance on the ethics of participating in the military–industrial complex, the largest scale of moral philosophy and ethical reasoning applicable in this case. However, I do know from our prior conversations that two years of community college opened few doors for employment, so enlisting in the military became an economic necessity. ¹ Each of the articles in this special issue touches on matters of routine, scale, and inequality in the “entanglement” (Mamo and Fishman 2013) of science, ethics, and justice.

Several of these articles came from a 2012 panel at the American Sociological Association meeting titled “Ethics and Science” another from our network of colleagues. Each was selected because it presents an original case with empirical or theoretical complexity that in some way or other troubles our conventional thinking. Collectively, the articles ask how organizational routines both produce and diffuse concerns about the distribution of the risks and benefits of scientific research and products, and why context remains elusive in formal ethical analysis. They trouble our thinking by exposing the “dark side” of organizational practices that shadows mundane activities and may cause misconduct, mistakes, and disasters (Vaughan 1999).

Studies of Ethics-related Practices in Science

Smith-Doerr and Vardi (2015) compare industry and academic lab settings and how researchers in those venues discuss and enact safety and ethics compliance. While much has been made of the challenges that the interpenetration of commercialization and academic enterprises has engendered, particularly the asymmetry of industrial influence on academe (Vallas and Kleinman 2008; Slaughter and Leslie 1997), little work has examined ethical practices at the laboratory level. Smith-Doerr and Vardi give us a glimpse of the instrumental and procedural reasoning that serve as discourses of ethics in academic and commercial settings, and how these decouple policy and practice. Compliance with organizational directives is formalized by researchers, in ritualized practices and often managed with humor. Conversely, some dimensions of ethical practice were more reflexively engaged. The influx of bureaucratic regimes of accountability into academe produces an asymmetry which is manifest in the ways that academics disengage daily practice from formal mandate. The academic and industrial settings have different formalistic and engaged practices, whether routine compliance with “responsible conduct of research” (RCR) training—largely seen as having no impact on day-to-day conduct or contrasted to safety practices that are taken seriously by researchers. As Smith-Doerr and Vardi (2015, 176-198) note, “universities don the clothing of commerce and use the language of cost centers while industrial firms wear the trappings of collegiality and call themselves campuses.”

Jill Fisher (2015) continues the theme of routinization by exposing the mundane practices in clinical research settings in pharmaceutical trials. In phase 1 clinical trials, healthy volunteers are enrolled in studies to establish dosing panels and safety parameters. These studies establish side-effect rates in relation to benefits expected for actual patients. Adverse effects are expected (Fisher 2015, 199-226) in these trials, and much of the structure, practice, and language of the trial experience is meant to de-emphasize risk and harm to the research participants. Only a handful of participants have died during phase 1 trials; but other side effects, from vomiting, dizziness, or psychotropic events, are presumed to be transitory and of no consequence to healthy participants. The transitory and inconsequential nature of the effects is what contributes to the banalization of risks in the medical routines of the clinics.

Particularly notable about these clinical trials are the racial and social class backgrounds of participants, with each site’s demographics reflecting local structures of racialized poverty. Why is this of concern? The average study, which requires residential “confinement” from one to up to forty-five days, can pay as much as US$4,000. While the institutional review boards (IRBs) specify that compensation for patients must not constitute “undue influence,” it is clear that there is a gap between a review board or individual researcher’s determination of the risk–reward ratio and the decision processes of patients who are often serial subjects.

For example, consider this recent advertisement (anonymized) from a clinical trials company in the United States (Figure 1). For up to nine total days of participation, plus follow-up visits (totaling about 230 hours of contact), the participant would receive about US$11.50 per hour, 50 percent more than the regional minimum wage. As Fisher notes, participants may choose which trials to participate in (e.g., categorically avoiding studies of psychotropic drugs), but neither side effects experienced outside the scope of the study nor the long-term effects on serial participants are tracked. Like Hecht’s (2012) “nuclear nomads,” wherein the workers are used by the subcontractors who provide maintenance in nuclear industries and travel from site to site (Japan and France use this model for their nuclear industries), there is no central monitoring of accumulated exposure or interacting effects. And like the nuclear power industry, the relative paucity of direct deaths “in the workplace” similarly banalizes the risks and hides complex realities. Economic inequality, particularly the vulnerability of the “precariat” that has intermittent employment and little access to social and financial capital, is overlooked by review boards and most ethics scholarship.

OPEN IN VIEWER

Figure 1.

Anonymized screenshot of 2014 recruitment section from a clinical trials site.

The themes of economic disadvantage and access to resources are taken up in part by Jennifer Singh (2015) as she studies the motivations for participating in an autism genetics database. There are several genomic databases for many illnesses, such as blood diseases, cancer, and, in this case, autism. Beyond contributing to future research and developing a community of patients and caregivers, the parents of children with autism spectrum disorders seek specific gains. In a close read of the overlapping narratives of participation, Singh discusses how parents take responsibility for the well-being of their child through a form of biological citizenship. While some parents were entirely altruistic about helping the autism community, seeking future cures and assisting unknown parents cope with autism diagnoses, others also felt obligated to help their child in any way, but the informed consent process and database description do not offer concrete benefits in the near term. Some primary testing and most reevaluations are not covered by insurance, and so their free availability to participants may shape the assessment of risks and benefits to participating in the genetics databases. This access to services is not treated as an incentive that might strongly shape moral reasoning by autism investigators.

Anne Pollock’s (2015) analysis of prisoner organ transplants in the United States develops and complicates thinking about biological citizenship and moral reasoning. Pollock’s account of the case of Gladys and Jamie Scott, incarcerated in 1994 with extraordinarily double life sentences for armed robbery, asks for an analysis that takes on a broader frame than conventional bioethics and poses several challenges for the field of science and technology studies (STS). The Scott Sisters’ sentences were indefinitely suspended (neither paroled nor pardoned, meaning their civil rights are not fully restored) on the condition that Gladys donate a kidney to Jamie. Upon their release in 2010, which saved the state of Mississippi about US$200,000 in annual dialysis costs, neither woman was healthy enough to go forward with the transplant. Pollock looks beyond the analysis of race as a scientific project in genetics to an expanded understanding of racialization, identifying contradictions within the US health care system and its tortuous relationship with the US penal system. These require careful examination of biological or therapeutic citizenship (Rose and Novas 2005; Petryna 2002; Nguyen 2005) to explain why communities of color are simultaneously “both underserved by and overexposed to the medical system” (Nelson 2011, 20). The case of the Scott Sisters is consistent with Casper and Moore’s (2009) argument that nonnormative bodies are subject to surveillance or treated as spectacle in some contexts and yet are rendered invisible in others.

Conclusion: Continuing the Conversation on Justice

As this quartet of articles illustrates, routinization and banalization are important terms in studying organizational practices. Routinization obscures the relationship between risk and harm, as Perrow (1999) notes, and can have an ambivalent role in managing accidents and undesirable outcomes, that is, it can either provide for systematic functional responses or prevent flexible and creative reactions to crises. Participants’ focus on small-scale organizational routines deflects notice from the entanglement of these routines in large-scale systems, such as of global capital and the economic vulnerability of the “precariat” (Standing 2011). The economic vulnerability of so many of the participants in the case studies in this volume—even scientists themselves face economic reorganization—calls into question ideas about autonomy and the distribution of risks. Is it really a choice to participate in research when it is apparently the best apparent economic opportunity? When it is the most cost-effective way to receive a medical screening? Or when that kidney donation is the best opportunity at limited freedom from incarceration?

The Belmont Report (1978), which forms the foundation of human subjects regulations, RCR training, and ethical procedures, describes justice as about the distribution of burdens and benefits of research. Principalism is the system of ethics based on moral principles of autonomy, beneficence, nonmaleficence, and justice. Lawrence (2007, 36) tells us that “Justice addresses the questions of distribution of scarce healthcare resources, respect for people’s rights and respect for morally acceptable laws.” The rest of the resources that humans might need as matters of justice are outside the frame. In the above definition of justice, principalism produces a narrow rather than a broad conception of social benefits and burdens in biomedical ethics and does not connect large-scale systems producing vulnerability or reducing ethical decision making to specific micro-sociological contexts and evaluations. As Herkert notes (or more ominously Arendt 1963 and Katz 1992), microethical compliance does not automatically produce macroethical moral good. In fact, the opposite is possible, that is, producing a “perfect” piece of mundane technical writing in support of the horrific goals of improving the efficiency of portable gas chamber vans is a routine organizational task (Katz 1992).

Mamo and Fishman set forward a set of important questions about justice as a project for STS: in what ways are justice or ethics our objects of study and in what ways are they our scholarly goals? Similarly, “what political work [do] the terms ethics and justice perform?” (2013, 164) and how do we manage the problem of normativity (p. 165) of the relationship between is and ought implicated in our own work? It is clear, however, that formal principalist assessments of the ethics of very specific science and technology moments generally cannot bridge the gaps between ethics, justice, and the practices and intra- and extraorganizational contexts that produce patients, practitioners, and participants. At the scale of the microeconomic and the cultural, there are two remaining questions of justice, namely, matters of undone science (Frickel et al. 2010) and the question about biological citizenship and the multiple process of “making up people” (Hacking 2006 and online ² ). Who decides, primarily by way of providing resources, what science gets done and to whose benefit? This is an old question for science policy, but nonetheless the threads from issues of research funding writ large can be traced to mundane research practices (cf. Kleinman 2003). Secondly, what kind of persons does (racialized) biological citizenship produce? What are the expectations, responsibilities, and rights of such persons? How is biological citizenship, as a form of neoliberal subjectivity, producing a simultaneously vulnerable yet responsible agent who is compelled to engage science, as researcher, patient, or subject, for their “own good?”

I imagine these cases and those from prior volumes (Mamo and Fishman 2013) as a centrifugal force seeking to break the confines of regular discourses of ethical decision making, particularly principalism, but the centripetal forces of institutional routine and the banalization of risk are overwhelming. These studies are unable to disrupt the institutional mass and the coherence of daily practices, prior professional discourses, and macroeconomic systems of production and economic vulnerability that bind scientific practice and normalize inequalities and injustices. It is possible that future cases will break out or break through and provide new ways of incorporating evaluations of inequality and justice into STS analysis, ethics scholarship, public policy, and the daily conduct of technoscience.