Biomedicine in recent decades has been defined by an increasing tendency to turn social problems into biomedical questions. Precision or personalized health initiatives have gained attention due to...

Feminist philosophers have discussed the prospects for assessing values empirically, particularly given the ongoing threat of sexism and other oppressive values influencing science and society. Some advocates of such tests now champion a “values as evidence” approach, and they criticize Helen Longino’s contextual empiricism for not holding values to the same level of empirical scrutiny as other claims. In this paper, we defend contextual empiricism by arguing that many of these criticisms are based on mischaracterizations of Longino’s position, overstatements of (...) certain claims, and false dichotomies. Her contextual empiricism not only allows for the empirical support and disconfirmation of values, but Longino explicitly discusses when values can be empirically adjudicated and emphasizes the crucial role of the community for standards of evidence. We support contextual empiricism and elaborate a less direct account of “values as heuristics” by reviewing Longino’s theory of evidence and then using a case study from Elisabeth Lloyd on the biology of female orgasm, demonstrating the disconfirmation of androcentric values in evolutionary science. Within Longino’s and Lloyd’s contextual empiricism, values do not get treated as empirical evidence to be directly assessed by individuals, but rather values are heuristic tools to build models whose use can be validated or invalidated by communities based on their empirical fruitfulness in the logic and pragmatics of research questions in specific historical and cultural contexts. (shrink)

Background Families whose child has unexplained intellectual or developmental differences often hope that a genetic diagnosis will lower barriers to community-based therapeutic and support services. However, there is little known about efforts to mobilize genetic information outside the clinic or how socioeconomic disadvantage shapes and constrains outcomes.Methods We conducted an ethnographic study with predominantly socioeconomically disadvantaged families enrolled in a multi-year genomics research study, including clinic observations and in-depth interviews in English and Spanish at multiple time points. Coding and thematic (...) development were used to collaboratively interpret fieldnotes and transcripts.Results Thirty-two families participated. Themes included familial expectations that a genetic diagnosis could be translated into information, understanding, and assistance to improve the quality of a child’s day-to-day life. After sequencing, however, genetic information was not readily converted into improved access to services beyond the clinic, with families often struggling to use a genetic diagnosis to advocate for their child.Conclusion Families’ ability to use a genetic diagnosis as an effective advocacy tool beyond the clinic was limited by the knowledge and resources available to them, and by the eligibility criteria used by therapeutic service providers’ – which focused on clinical diagnosis and functional criteria more than etiologic information. All families undertaking genomic testing, particularly those who are disadvantaged, need additional support to understand the limits and potential benefits of genetic information beyond the clinic. (shrink)

This paper problematizes the precision medicine approach embraced by the All of Us Research Program (US) and by Genomics England (UK) in terms of benefits distribution, by arguing that current “diversity and inclusion” efforts do not prevent exclusiveness, unless the framing and scope of the projects are revisited in public health terms. Grounded on document analysis and fieldwork interviews, this paper analyzes efforts to address potential patterns of exclusion upstream (from participating in precision medicine research) and downstream (from benefitting from (...) precision medicine outputs). It argues that efforts for inclusion upstream are not corresponded downstream, and this unbalance jeopardizes the equitable capacities of the projects. It concludes that enhanced focus on socio-environmental determinants of health and aligned public health interventions as precision medicine outputs would be to the benefit of all and especially of those who are most at risk of (upstream as well as downstream) exclusion. (shrink)

Criticism is a staple of the scientific enterprise and of the social epistemology of science. Philosophical discussions of criticism have traditionally focused on its roles in relation to objectivity, confirmation, and theory choice. However, attention to criticism and to criticizability should also inform our thinking about scientific pursuits: the allocation of resources with the aim of developing scientific tools and ideas. In this paper, we offer an account of scientific pursuitworthiness which takes criticizability as its starting point. We call this (...) the apokritic model of pursuit. Its core ideas are that pursuits are practices governed by norms for asking and answering questions, and that criticism arises from the breach of these norms. We illustrate and advertise our approach using examples from institutional grant review, neuroscience, and sociology. We show that the apokritic model can unify several indices of criticizability, that it can account for the importance of criticizing pursuits in scientific practice, and that it can offer ameliorative advice to erstwhile pursuers. (shrink)

Advancements in novel neurotechnologies, such as brain computer interfaces and neuromodulatory devices such as deep brain stimulators, will have profound implications for society and human rights. While these technologies are improving the diagnosis and treatment of mental and neurological diseases, they can also alter individual agency and estrange those using neurotechnologies from their sense of self, challenging basic notions of what it means to be human. As an international coalition of interdisciplinary scholars and practitioners, we examine these challenges and make (...) recommendations to mitigate negative consequences that could arise from the unregulated development or application of novel neurotechnologies. We explore potential ethical challenges in four key areas: identity and agency, privacy, bias, and enhancement. To address them, we propose democratic and inclusive summits to establish globally-coordinated ethical and societal guidelines for neurotechnology development and application, new measures, including “Neurorights,” for data privacy, security, and consent to empower neurotechnology users’ control over their data, new methods of identifying and preventing bias, and the adoption of public guidelines for safe and equitable distribution of neurotechnological devices. (shrink)

A discussion of whiteness as an “ethos” or “relational category” in bioethics, drawing on examples from medical and historical research.

In 2004, the Havasupai Tribe filed a lawsuit against the Arizona Board of Regents and Arizona State University researchers upon discovering their DNA samples, initially collected for genetic studies on type 2 diabetes, had been used in several other genetic studies. The lawsuit reached a settlement in April 2010 that included monetary compensation and return of DNA samples to the Havasupai but left no legal precedent for researchers. Through semistructured interviews, institutional review board chairs and human genetics researchers at US (...) research institutions revealed their perspectives on the Havasupai lawsuit. For interviewees, the suit drew attention to indigenous concerns over genetic studies and increased their awareness of indigenous views. However, interviewees perceived no direct impact from the Havasupai case on their work; if they did, it was the perceived need to safeguard themselves by obtaining broad consent or shying away from research with indigenous communities altogether, raising important questions of justice for indigenous and minority participants. If researchers and IRBs do not change their practices in light of this case, these populations will likely continue to be excluded from a majority of research studies and left with less access to resources and potential benefit from genetic research participation. (shrink)

Epidemiology for and by Indigenous peoples uses quantitative and statistical methods to better document Indigenous health concerns, and is oriented around providing data for use in advocacy to promote Indigenous health equity. This advocacy-oriented, technoscientific work bridges the often distinct social worlds of Indigenous communities, professional public health research, and public policy-making. Using examples from a multisited ethnographic study in three settings, this paper examines the forms of expertise that researcher/practitioners enact as they conduct research that simultaneously harnesses epidemiology’s persuasive (...) power in social worlds like public health and public policy, while also critically challenging legacies of colonialist erasures and misrepresentations of Indigenous health in population statistics. By demonstrating how these continual translations across multiple social worlds enact expertise, this analysis offers a new integration of discussions about both coloniality and expertise within science and technology studies. By focusing on the experiences of technoscientific professionals themselves, this study’s findings also pose new questions for broader STS conversations about how activism is shaping the production of knowledge about health in the twenty-first century. (shrink)

Science and technology studies and the emerging field of data science share surprising elective affinities. At the growing intersections of these fields, there will be many opportunities and not a few thorny difficulties for STS scholars. First, I discuss how both fields frame the rollout of data science as a simultaneously social and technical endeavor, even if in distinct ways and for diverging purposes. Second, I discuss the logic of domains in contemporary computer, information, and data science circles. While STS (...) is often agnostic about the borders between the sciences or with industry and state—occasionally taking those boundaries as an object of study—data science takes those boundaries as its target to overcome. These two elective affinities present analytic and practical challenges for STS but also opportunities for engagement. Overall, in addition to these typifications, I urge STS scholars to strategically position themselves to investigate and contribute to the breadth of transformations that seek to touch virtually every science and newly bind spheres of academy, industry, and state. (shrink)

In our interactions with science, we are often vulnerable; we do not have complete control of the situation and there is a risk that we, or those we love, might be harmed. This is not an emotionall...

In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside of (...) traditional networks of healthcare services, or members of minorities and marginalised groups. In view of growing public investments in participatory research endeavours, we argue that it should be considered more explicitly if, and how, citizen science could help make research more inclusive, contribute to the public good, and possibly even lead to better and more equitable healthcare. Reflecting on emerging ethical concerns for scientific conduct and best medical practice, we propose a set of relevant considerations for researchers, practitioners, bioethicists, funders and participants who seek to advance ethical practices of citizen-led health initiatives, and address profound differences in position, privilege and power in research. (shrink)

This paper defends the concept of racialization against its critics. As the concept has become increasingly popular, questions about its meaning and value have been raised, and a backlash against its use has occurred. I argue that when “racialization” is properly understood, criticisms of the concept are unsuccessful. I defend a definition of racialization and identify its companion concept, “racialized group.” Racialization is often used as a synonym for “racial formation.” I argue that this is a mistake. Racial formation theory (...) is committed to racial ontology, but racialization is best understood as the process through which racialized – rather than racial – groups are formed. “Racialization” plays a unique role in the conceptual landscape, and it is a key concept for race eliminativists and anti-realists about race. (shrink)

Building, restoring and maintaining well-placed trust between scientists and the public is a difficult yet crucial social task requiring the successful cooperation of various social actors and institutions. Kitcher’s takes up this challenge in the context of liberal democratic societies by extending his ideal model of “well-ordered science” that he had originally formulated in his. However, Kitcher nowhere offers an explicit account of what it means for the public to invest epistemic trust in science. Yet in order to understand how (...) his extended model and its implementation in the actual world address the problem of trust as well as to evaluate it critically, an explicit account of epistemic public trust in science needs to be given first. In this article we first present such an account and then scrutinize his project of building public trust in science in light of it. We argue that even though Kitcher’s ideal model and his proposals for its implementation in the real world face a number of problems, they can be addressed with the resources of our account. (shrink)

This article focuses on epistemic challenges related to the democratisation of scientific knowledge production, and to the limitations of current social accounts of objectivity. A process of ’democratisation’ can be observed in many scientific and academic fields today. Collaboration with extra-academic agents and the use of extra-academic expertise and knowledge has become common, and researchers are interested in promoting socially inclusive research practices. As this development is particularly prevalent in policy-relevant research, it is important that the new, more democratic forms (...) of research be objective. In social accounts of objectivity only epistemic communities are taken to be able to produce objective knowledge, or the entity whose objectivity is to be assessed is precisely such a community. As I argue, these accounts do not allow for situations where it is not easy to identify the relevant epistemic community. Democratisation of scientific knowledge production can lead to such situations. As an example, I discuss attempts to link indigenous oral traditions to floods and tsunamis that happened hundreds or even thousands of years ago. (shrink)

The research and publication practices by which scientists produce biomedical knowledge about race and ethnicity remain largely unexamined despite increasing interest in biological explanations for health disparities by race, as well as prominent critiques by social scientists highlighting the implications of conceptualizing race as a biological category. Although a growing number of studies on lab and research practices are helping to map meanings of race and ethnicity on notions of difference and health, we still have very little understanding of the (...) earlier funding application stage or of the resulting publications. We know that knowledge production can involve a range of different processes, including consensus building, strategic and instrumental decision making, as well as conscious and subconscious cognitive filtering, through which we direct analytic attention only to those aspects of a problem or topic that are defined as “relevant” and “important.” These processes also involve the “translation” of ideas such as race and ethnicity for different audiences, which occurs in broader contexts of cultural norms and institutional rules and practices. (shrink)

Public discourse on race-specific medicine typically erects a wall between the scientific use of race as a biological category and the ideological battle over race as a social identity. Scientists often address the potential for these therapeutics to reinforce a damaging understanding of “race” with precautions for using them rather than questioning their very development. For example, Esteban Gonzalez Burchard, an associate professor of medicine and biopharmaceutical sciences at the University of California, San Francisco, states, “We do see racial differences (...) between populations and shouldn’t just close our eyes. Unfortunately, race is a politically charged topic, and there will be evildoers. But the fear should not outweigh the benefit of looking.” Although it is recognized that ideology influences thesocialmeaning of race, it is usually assumed that there is a separate, prior scientific understanding of race that is not contaminated by politics. (shrink)

“You are interested in ethics,” the clinician said, “there are problems with medical ethics in Taiwan.” It was 2005, shortly after I had moved to Taiwan. A little later, a professor told me of a university hospital that served as a site for a transnational clinical trial run by a pharmaceutical company. He said that since no informed consent procedure was in place at that time, the hospital had simply obtained employer consent. “That’s why companies want to come to Taiwan (...) to do clinical testing, because you can do anything here—things that can’t be done in the US. That’s why everyone wants to come to Taiwan.” These statements may seem, at first, to indicate a lack of concern in Taiwan for medical and scientific... (shrink)

Gender-medicine has been very successful in discovering gaps in medical knowledge, disclosing biases in earlier research, and generating new results. It has superseded a more androcentric and sexist medicine. Yet, its development should not be understood in terms of a further approximation of value-freedom. Rather, it is a case of better value-laden science due to an enhanced pluralism in medicine and society. This interpretation is based on an account of the origins of gender-medicine in the feminist women’s health movement and (...) an analysis of the debate on inclusion of women in clinical trials. Consequently, the history of gender-medicine provides support for a procedural account of objectivity that stresses the importance of a diversity of perspectives. (shrink)

Feminist science studies scholars have documented the historical and cultural contingency of scientific knowledge production. It follows that political and social activism has impacted the practice of science today; however, little has been done to examine the current cultures of science in light of feminist critiques and activism. In this article, I argue that, although critiques have changed the cultures of science both directly and indirectly, fundamental epistemological questions have largely been ignored and neutralized through these policy reforms. I provide (...) an auto-ethnography of my doctoral work in a neuroscience program to a) demonstrate how the culture of science has incorporated critiques into its practices and b) identify how we might use these changes in scientific practices to advance feminist science agendas. I critically analyze three areas in current scientific practice in which I see obstacles and opportunities: 1) research ethics, 2) diversity of research subjects and scientists, and 3) identification of a project's significance for funding. I argue that an understanding of the complicated and changing cultures of science is necessary for future feminist interventions into the sciences that directly challenge science's claim to epistemic authority. (shrink)

The hygiene hypothesis offers an explanation for the correlation, well-established in the industrialized nations of North and West, between increased hygiene and sanitation, and increased rates of asthma and allergies. Recent studies have added to the scope of the hypothesis, showing a link between decreased exposure to certain bacteria and parasitic worms, and increased rates of depression and intestinal auto- immune disorders, respectively. What remains less often discussed in the research on these links is that women have higher rates than (...) men of asthma and allergies, as well as many auto-immune disorders, and also depression. The current paper introduces a feminist understanding of gender socialization to the epidemiological and immunological picture. That standards of cleanliness are generally higher for girls than boys, especially under the age of five when children are more likely to be under close adult supervision, is a robust phenomenon in industrialized nations, and some research points to a cross- cultural pattern. I conclude that, insofar as the hygiene hypothesis successfully identifies standards of hygiene and sanitation as mediators of immune health, then attention to the relevant patterns of gender socialization is important. The review also makes clear that adding a feminist analysis of gender socialization to the hygiene hypothesis helps explain variation in morbidity rates not addressed by other sources and responds to a number of outstanding puzzles in current research. Alternative explanations for the sex differences in the relevant morbidity rates are also discussed (e.g., the effects of estrogens). Finally, new sources of evidence for the hygiene hypothesis are suggested in the form of cross-cultural and other natural experiments. (shrink)

Abstract As Paul B. Thompson suggests in his recent seminal paper, “‘There’s an App for That’: Technical Standards and Commodification by Technological Means,” technical standards restructure property (and other social) relations. He concludes with the claim that the development of technical standards of commodification can serve purposes with bad effects such as “the rise of the factory system and the deskilling of work” or progressive effects such as how “technical standards for animal welfare… discipline the unwanted consequences of market forces.” (...) In this reply, we want to append several points to his argument and suggest that he rightly points out that standards can promote various goods; however, there are peculiar powers wielded by standardization processes that might profitably be unpacked more systematically than Thompson's article seems to suggest. First, the concealment of the technopolitics around standards is largely due to their peculiar ontological status as recipes for reality. Second, technical standards can and do commit violence against persons, but such violence is often suffered not in the formation of class consciousness, as Marx might have put it, but as a failure to conform to the laws of nature . Content Type Journal Article Category Commentary Pages 1-6 DOI 10.1007/s13347-011-0048-1 Authors Lawrence Busch, Department of Sociology, Michigan State University, 429A Berkey Hall, East Lansing, MI 48824, USA Kyle Powys Whyte, Department of Philosophy, Michigan State University, 503 S. Kedzie Hall, East Lansing, MI 48824, USA Journal Philosophy & Technology Online ISSN 2210-5441 Print ISSN 2210-5433. (shrink)

An astonishing volume and diversity of evidence is available for many hypotheses in the biomedical and social sciences. Some of this evidence—usually from randomized controlled trials (RCTs)—is amalgamated by meta-analysis. Despite the ongoing debate regarding whether or not RCTs are the ‘gold-standard’ of evidence, it is usually meta-analysis which is considered the best source of evidence: meta-analysis is thought by many to be the platinum standard of evidence. However, I argue that meta-analysis falls far short of that standard. Different meta-analyses (...) of the same evidence can reach contradictory conclusions. Meta-analysis fails to provide objective grounds for intersubjective assessments of hypotheses because numerous decisions must be made when performing a meta-analysis which allow wide latitude for subjective idiosyncrasies to influence its outcome. I end by suggesting that an older tradition of evidence in medicine—the plurality of reasoning strategies appealed to by the epidemiologist Sir Bradford Hill—is a superior strategy for assessing a large volume and diversity of evidence. (shrink)

BiDil, a drug approved in 2005 by the FDA only for African Americans, was seen by many as almost reparations for the horrors of the Tuskegee Syphilis Study where treatment for black men was denied. The logic of race, however, rather than racism, links BiDil to the past many thought it was escaping.

What kinds of evidence reliably support predictions of effectiveness for health and social care interventions? There is increasing reliance, not only for health care policy and practice but also for more general social and economic policy deliberation, on evidence that comes from studies whose basic logic is that of JS Mill's method of difference. These include randomized controlled trials, case–control studies, cohort studies, and some uses of causal Bayes nets and counterfactual-licensing models like ones commonly developed in econometrics. The topic (...) of this paper is the 'external validity' of causal conclusions from these kinds of studies. We shall argue two claims. Claim, negative: external validity is the wrong idea; claim, positive: 'capacities' are almost always the right idea, if there is a right idea to be had. If we are right about these claims, it makes big problems for policy decisions. Many advice guides for grading policy predictions give top grades to a proposed policy if it has two good Mill's-method-of difference studies that support it. But if capacities are to serve as the conduit for support from a method-of-difference study to an effectiveness prediction, much more evidence, and much different in kind, is required. We will illustrate the complexities involved with the case of multisystemic therapy, an internationally adopted intervention to try to diminish antisocial behaviour in young people. (shrink)

This paper argues that, because Science and Technology Studies lost contact with political philosophy, its defense of public participation in policy-making involving technical claims is normatively unsatisfactory. Current penchants for political under-laboring and normative individualism are critiqued, and the connections between STS and theorists of deliberative democracy are explored. A conservative normativity is proposed, and STS positions on public participation are discussed in relation to current questions about individual and group rights in a liberal democracy. The result is avenues to (...) normatively defend public participation, by analogy with identity politics and Habermas, while also theorizing its limits.--------------------------------------------------------------------------------------------- ---------------------------------------------------------------------------------------------------- ---------------------------------------------------------------------------------------------------- ---------------------------------------------------------------------------------------------------- ---------------------------------------------------------------------------------------------------- ---------------------------------------------------------------------------------------------------- -----------------------------------------------. (shrink)

Cardiovascular disease is the leading cause of death of women in the United States, yet cardiovascular research is disproportionately conducted using male human subjects and male animal models. This article deploys Katrina Hutchison’s (2019) analysis of gender disparity in clinical trials as a moral aggregation problem to address the problem of underrepresentation of women in cardiovascular research. I identify cost concerns, convenience, pregnancy, and negligence as potential reasons for the underrepresentation of women in CVD research. Finally, I suggest that multilevel (...) strategies will be needed to eliminate sex disparity in CVD research and improve patient care. (shrink)

In this paper, it is our purpose to argue for a processual conception of ill-person- identity. To do so, we will review some of the main answers that philosophy has given to the question of personal identity. We will review certain proposals on how to conceive illness and ill-person-identity, as well. Within the frame of a processual approach to ontology, we will focus on a non-dualistic processual-relational interpretation of biological organisms.

Institutional review boards, tasked with facilitating ethical research, are often pulled in competing directions. In what we call the protection-inclusion dilemma, we acknowledge the tensions IRBs face in aiming to both protect potential research participants from harm and include under-represented populations in research. In this manuscript, we examine the history of protectionism that has dominated research ethics oversight in the United States, as well as two responses to such protectionism: inclusion initiatives and critiques of the term vulnerability. We look at (...) what we know about IRB decision-making in relation to protecting and including “vulnerable” groups in research and examine the lack of regulatory guidance related to this dilemma, which encourages protection over inclusion within IRB practice. Finally, we offer recommendations related to how IRBs might strike a better balance between inclusion and protection in research ethics oversight. (shrink)

Ethnicity and im/migrant classification systems and their constituent categories have a long history in the construction of public health knowledge on tuberculosis in the United Kingdom. This article critically examines the categories employed and the epidemiological discourses on TB, im/migrants, and ethnic minorities in health reporting between 1965 and 2015. We employ a Sociology of Knowledge Approach to Discourse Analysis to trace the continuities and changes in the categories used and in the discursive construction of im/migrants, ethnic minorities, and TB. (...) These continuities and disjunctures are analysed within their socio-historical context to demonstrate the historical contingency of epidemiological knowledge production. We outline two historical phases in knowledge construction. The first coincides with the period of decolonisation, which witnessed a change in discursive identity ascriptions from ‘immigrants’ to ‘ethnic groups’ in health reporting as the ‘other’. The second commenced after 1991, when the adoption of the census ethnicity categories as a standard in the collection of population statistics entrenched ethnicity categories in health reporting. We argue the health reporting discourse reveals that the ‘new’ public health exhibits continuities with the ‘old’ by targeting the immigrant ‘other’ through biosecuritisation practices. We contend that these categories originated within a postcolonial paradigm and that increasing immigration and new forms of mobility are creating the preconditions for new discourses on identity construction that have implications for the current collaborative TB strategy. (shrink)

Scientists’ identities and social locations influence their work, but the content of scientific work can also influence scientists. Theory from feminist science studies, autoethnographic accounts, interviews, and experiments indicate that the substance of scientific research can have profound effects on how scientists are treated by colleagues and their sense of belonging in science. I bring together these disparate literatures under the framework of professional cultures. Drawing on the Survey of Earned Doctorates and the Web of Science, I use computational social (...) science tools to argue that the way scientists write about sex in their research influences the future gender ratio of PhDs awarded across 53 subfields of the life sciences over a span of 47 years. Specifically, I show that a critical paradigm of “feminist biology” that seeks to de-essentialize sex and gender corresponds to increases in women’s graduation rates, whereas “sex difference” research—sometimes called “neurosexism” because of its emphasis on essential, categorical differences—corresponds to decreases in women’s graduation rates in most fields. (shrink)

In both social science and medicine, research on reproduction generally focuses on women. In this article, we examine how men’s reproductive contributions are understood. We develop an analytic framework that brings together Cynthia Daniels’ conceptualization of reproductive masculinity with a staged view of reproduction, where the stages include the period before conception, conception, gestation, and birth. Drawing on data from two medical sites that are oriented to the period before pregnancy, we examine how gendered knowledge about reproduction produces different reproductive (...) equations in different stages of the reproductive process. We conclude with a new research agenda that emerges from rethinking the role of men and masculinity in reproduction. (shrink)

Recent science and technology studies have analyzed questions of nonexpert participation in science, technology, and science policy from an empirically grounded perspective. The introduction to this special issue offers a double contribution to this debate. First, it presents a summary of the state of the art and an outline of the historical emergence of the participatory question. The argument distinguishes four periods since the late nineteenth century, each with a specific relationship between expert and nonexpert knowledge ranging from a hybrid, (...) to a politicized, to an autonomous, to a participatory relationship. Second, the introduction summarizes the contributions to this issue. Their common concern is to take the debate one step further by critically reflecting the problems and limitations of participatory practices. The contributions point out the need for contextualizing the participatory question within the wider social, economic, and political circumstances in which participatory science and technology is set. (shrink)

In December 2010, the governor of Mississippi suspended the dual life sentences of two African American sisters who had been imprisoned for sixteen years on an extraordinary condition: that Gladys Scott donate a kidney to her ailing sister Jamie Scott. The Scott Sisters’ case is a highly unusual one, yet it is a revealing site for inquiry into US biopolitics more broadly. Close attention to the conditional release and its context demands a broader frame than traditional bioethics and helps to (...) push science and technology studies analysis of race past its conventional focus on genetics. This article draws on the Scott Sisters’ case as a site for interrogating the US context of racialized mass incarceration and kin-oriented and consumerist valorization of organ donation. Tensions between racialized exclusions, the promise of consumerist freedom, and the lack of expectations of the state are foundational to a distinctly American biological citizenship. By putting the Scott Sisters’ case into conversation with broader arguments about incarceration as a site of racialization and STS literatures of organ transplantation and of biological citizenship in diverse geographical sites, this article seeks to articulate some of the racialized contours of biopolitics in the United States. (shrink)

This article explores the development of a novel biomedical research organism, and its potential to remake the species and spaces of translational medicine. The humanized mouse is a complex experimental object in which mice, rendered immunodeficient through genetic alteration, are engrafted with human stem cells in the hope of reconstituting a human immune system for biomedical research and drug testing. These chimeric organisms have yet to garner the same commentary from social scientists as other human–animal hybrid forms. Yet, they are (...) rapidly being positioned as central to translational medicine in immunological research and pharmaceutical development. This article explores the complex relations between species and spaces they seek to enact. Humanizing mice simultaneously moves these animal forms towards the intimate geographies of corporeal equivalence with humans and the expansive geographies of translational research. These multiple trajectories are achieved by the way humanized mice function as both uncertain ‘epistemic things’ and as expansive ‘collaborative things’, articulating mouse genetics with other research, notably stem cell science. In the context of post-genomics, their indeterminacy is critical to their collaborative value; their expansive potential follows as much from their biological openness as from specific expectations. Yet, these new research organisms have both accumulative and disruptive capacities, for there are patterns of interference between these trajectories, remaking boundaries between experimental practices and clinical contexts. (shrink)

This paper traces the unspoken, implicit white racial logic of the brain disease model of addiction, which is based on seemingly universal, disembodied brains devoid of social or environmental influences. In the United States, this implicit white logic led to “context-free” neuroscience that made the social hierarchies of addiction and its consequences invisible to, and thus exacerbated by, national policies on opioids. The brain disease model of addiction was selectively deployed among the white middle-class population that had long accessed narcotics (...) and pharmaceutical treatments for narcotics disorders from biomedical clinics, as opposed to from illegal sources subject to law enforcement. In turn, new treatments for opioid addiction were racially marketed to the same white clientele to which newly patented opioid analgesics were marketed, tapping into a circumscribed but highly lucrative consumer base that has long benefited from a legally protected, racially segregated safe space for white narcotics consumption. The connecting thread for the contemporary white opioid “crisis,” therefore, is white race as a ghost variable in addiction neuroscience and in its pharmaceutical and biotechnological translation. (shrink)

Facial feminization surgery (FFS) is a set of bone and soft tissue procedures intended to feminize the faces of transgender women. In the surgical evaluation, particular facial features are identified as ‘sex specific’ and targeted for intervention as such. But those features do not exhibit ‘maleness’ or ‘femaleness’ alone; they are complexly entwined with morphologies of ethnic classification. Based on clinical observation, I show how the desired feminine ideal conflicted with facial characteristics identified as ‘ethnic’. In FFS practice, ‘masculinity’ and (...) ‘ethnicity’ were entangled as the constitutive outsides by which desirable ‘femininity’ was articulated. I argue that surgery that self-consciously enacts a patient’s move away from physiognomically identifiable ethnicity in order to achieve an ostensibly unmarked and neutral femininity becomes not only a process of feminizing the face but of whitening it, regardless of whether ‘white’ features are the express desire of the patient or aim of the surgeon. (shrink)

How do institutions respond to expert contests over epistemologies of sex and gender? In this article, I consider how epistemological ascendancy in debates over the regulation of women athletes with high testosterone is established within a legal setting. Approaching regulation as an institutional act that defines forms of embodied difference, the legitimacy of which may be called into question, I show how sexed bodies are enacted through and as part of determinations of expertise. I focus on proceedings from 2015 when (...) the Court of Arbitration for Sport was asked to decide whether an Indian sprinter, Dutee Chand, could compete as a female athlete. Despite acknowledging that sexed bodies are unruly, the court ultimately endorsed the use of testosterone as seemingly essential to women’s athletic performance, thereby reasserting a two-category model of biological difference. The legitimacy of these regulatory efforts was established through the concurrent narrowing of expertise and the body, a process that is also revealed to be gendered. (shrink)

The use of artificial intelligence in healthcare has led to debates about the role of human clinicians in the increasingly technological contexts of medicine. Some researchers have argued that AI will augment the capacities of physicians and increase their availability to provide empathy and other uniquely human forms of care to their patients. The human vulnerabilities experienced in the healthcare context raise the stakes of new technologies such as AI, and the human dimensions of AI in healthcare have particular significance (...) for research in the humanities. This article explains four key areas of concern relating to AI and the role that medical/health humanities research can play in addressing them: definition and regulation of “medical” versus “health” data and apps; social determinants of health; narrative medicine; and technological mediation of care. Issues include data privacy and trust, flawed datasets and algorithmic bias, racial discrimination, and the rhetoric of humanism and disability. Through a discussion of potential humanities contributions to these emerging intersections with AI, this article will suggest future scholarly directions for the field. (shrink)

The US Food and Drug Administration (FDA) is fraught with controversies over the role of values and politics in regulatory science, especially with drugs in the realm of reproductive health. Philosophers and science studies scholars have investigated the ways in which social context shapes medical knowledge through value judgments, and feminist scholars and activists have criticized sexism and injustice in reproductive medicine. Nonetheless, there has been no systematic study of values and gender norms in FDA drug regulation. I focus on (...) three questions about values in regulatory science. First, how have societal values and gender norms shaped the way that the FDA regulates drugs in the realm of reproductive health, specifically with drug labels? Second, what are the ethical, epistemic, and social consequences of these influences on regulation for women and other marginalized groups? Third, which societal values and gender norms ought to influence drug regulation about reproductive health, and how ought this happen? Integrating philosophical analysis with historical archival research and in-depth interviews, I conduct three case studies of drug labeling about reproductive health: (1) the “drug fact” about the mechanism of the morning-after pill; (2) the package inserts for patients about the health risks of oral contraceptives; and (3) the special physician labels made for prescribing drugs to pregnant women. I identify three challenges for the FDA and suggest ways to reduce the influence of sexist values and facilitate feminist alternatives. First, across these cases, I have found that there are many ways in which other concerns in reproductive medicine (such as zygotic life, fetal health, and population control) have devalued women’s health. Second, both knowledge and ignorance xvi about their reproductive health have contributed to women’s oppression, especially poor women and women of color. Finally, by avoiding the epistemic dimensions of ethics, powerful, mostly male parties in medicine (such as doctors, pharmaceutical companies, and religious institutions) have misused “informed consent,” “religious freedom,” and “paternalism” for unethical purposes. For improvement, I suggest extracting sexist values and gender norms from regulatory science that cause epistemic injustices, and I point to success stories for reforming sexism with feminism at the FDA. (shrink)

Endangered species are objects of intense scientific scrutiny and political conflict. This article focuses on the interplay among human-nonhuman relations, knowledge production, and the politics of endangerment. Advancing a historical ontology of endangerment, it highlights the role of transforming the nonhuman world in the coming to be of new objects of environmental knowledge. Such knowledge can provide the basis for credible claims of endangerment, facilitating mobilizations against the very human-nonhuman relations that produced it. An in-depth case study of the delta (...) smelt, an endangered species of fish caught in the center of California’s “water wars,” shows how changes in the instrumentalization of the nonhuman environment can produce new knowledge of nature that allows actors to make claims and form coalitions that would be otherwise inconceivable. Because its sole habitat is the hub of California’s water delivery system, efforts to save the species from extinction have reduced flows to farms and cities, fomenting conflict between environmentalists and water users. This article demonstrates that the taxonomic classification of the delta smelt as a species and evidence of its decline arose directly from the reengineering of California’s rivers for extractive ends. Ironically, the knowledge on which environmental advocates relied was a product of the instrumental relation to nature that they sought to transform. (shrink)

In this special issue we explore practices of scientific inquiry into human populations in Latin America in order to generate new insights into the complex historical and sociopolitical dynamics that have made certain human groups integral to the production of scientific knowledge in and about the region. In important contributions, other scholars have shown that the science of human difference is racist and all too often has been a mediator of development ideologies. To further unpack these arguments we focus attention (...) on the complex interaction between scientists and the populations they study. We explore cases from across the fields of evolutionary biology, demography, epidemiology... (shrink)

Problem: Medical student mistreatment, as well as patient and staff mistreatment by all levels of medical trainees and faculty, is still prevalent in U.S. clinical training. Largely missing in interventions to reduce mistreatment is acknowledgement of the abuse of power produced by the hierarchical structure in which medicine is practiced. Approach: Beginning in 2001, Yale School of Medicine has held annual “Power Day” workshops for third year medical students and advanced practice nursing students, to define and analyse power dynamics within (...) the medical hierarchy and hidden curriculum using literature, guest speakers, and small groups. During rotations, medical students write narratives about the use of power witnessed in the wards. In response to student and small group leader feedback, workshop organizers have developed additional activities related to examining and changing the use of power in clinical teams. Outcome: Emerging narrative themes included the potential impact of small acts and students feeling “mute” and “complicit” in morally distressing situations. Small groups provided safe spaces for advice, support, and professional identity formation. By 2005, students recognized residents that used power positively with Power Day awards and alumni served as keynote speakers on the use of power in medicine. By 2010, departments including OB/GYN, surgery, psychiatry, and paediatrics, had added weekly team Power Hour discussions. Next Steps: The authors highlight barriers, benefits, and lessons learned. Barriers include the notion of clinical irrelevance and resistance to the word “power” due to perceived accusation of abuse. Benefits include promoting open dialogue about power, fostering inter-professional collaboration, rewarding positive role modelling by residents and faculty, and creating a network of trainee empowerment and leadership. Furthermore, faculty have started to ask that issues of power be addressed in a more transparent way at their level of the hierarchy as well. (shrink)

Feminist philosophers of science have been prominent amongst social epistemologists who draw attention to communal aspects of knowing. As part of this work, I focus on the need to examine the relations between scientific communities and lay communities, particularly marginalized communities, for understanding the epistemic merit of scientific practices. I draw on Naomi Scheman's argument (2001) that science earns epistemic merit by rationally grounding trust across social locations. Following this view, more turns out to be relevant to epistemic assessment than (...) simply following the standards of "normal science". On such an account, philosophers of science need to attend to the relations between scientific communities and various lay communities, especially marginalized communities, to understand how scientific practices can rationally ground trust and thus earn their status as "good ways of knowing". Trust turns out to involve a wide set of expectations on behalf of lay communities. In this paper I focus on expectations of knowledge sharing, using examples of "knowledge-sharing whistleblowers" to illustrate how failures in knowledge sharing with lay communities can erode epistemic trust in scientific communities, particularly in the case of marginalized communities. (shrink)

Approximately 20% of adult cancer patients are eligible to participate in a clinical trial, but only 2.5-9% do so. Accrual is even less for minority and medically underserved populations. As a result, critical life-saving treatments and quality of life services developed from research studies may not address their needs. This study questions the utility of the bioethical concern with therapeutic misconception (TM), a misconception that occurs when research subjects fail to distinguish between clinical research and ordinary treatment, and therefore attribute (...) therapeutic intent to research procedures in the safety net setting. This paper provides ethnographic insight into the ways in which research is discussed and related to standard treatment. (shrink)