Cultivated co-production: Sexual health,human rights,and the revision of the ICD

Abstract

STS scholars frequently have shown how science and sociopolitical arrangements are ‘co-produced’, typically tracing how scientific actors themselves keep ‘science’ and ‘politics’ far apart. Revealing co-production is therefore deemed the work of the STS analyst, who unearths linkages that the actors might be unaware of, or might ignore or deny. By contrast, the creation of a new chapter on ‘sexual health’ in the recent revision of the International Classification of Diseases (ICD) offers a case of what might be termed ‘cultivated co-production’. Neither oblivious to the linkages between science and politics nor invested in obscuring them, the designers of the sexual health chapter sought support for their work by demonstrating, transparently, how science, ethics, and human rights might properly be aligned. The intentional and visible character of co-production in this case indicates awareness of the need to manage the contested nature of gender and sexuality at a transnational level. It also reflects two changes in the organization of medical politics and medical classification: a widespread recognition of the necessity of reaching out to lay stakeholders and advocates, and the rise of an emphasis on ‘conventions’ as the backbone of transnational biomedical consensus processes.

Keywords

co-production classification sexual health transgender human rights health activism transnationalism

On May 25, 2019, the World Health Assembly, the decision-making body composed of delegates from all 194 member states of the World Health Organization (WHO), voted to ratify the first major revision in more than a quarter century to the world’s most widely used medical classification system. Formally called the International Statistical Classification of Diseases and Related Health Problems, but better known as the International Classification of Diseases or, more simply still, the ICD, this tool will undergo the transition from the tenth to the eleventh version on January 1, 2022 (World Health Organization, 2018, 2019). According to the WHO, which has been responsible for managing this instrument as part of its core mission ever since the creation of the agency, the ICD is ‘the foundation for the identification of health trends and statistics globally, and the international standard for reporting diseases and health conditions’.¹ Within its tree-like structure, every disease and health condition is designated by an alphanumeric code. These codes − around 55,000 of them − are aggregated into ‘chapters’, which constitute major disease categories, such as neoplasms, diseases of the immune system, and diseases of the skin.

Member states are committed, by international treaty, to using the ICD as their standard for collecting and reporting health data for a variety of purposes. The goal is to promote comparability and standardization (Timmermans and Epstein, 2010) across national borders, as the ICD (in the words of the WHO) ‘provides a common language that allows health professionals to share health information around the globe’ (World Health Organization, 2018). Just as importantly, within countries, the ICD is also the backbone of national health programs and insurance reimbursement systems. For example, in the United States, a version of the tenth edition is the only official coding system permitted under the Health Insurance Portability and Accountability Act of 1996 (HIPAA), and its use is required for government programs such as Medicare, as well as by most private insurance companies (Reed, 2017). As Bowker and Star (1999: 110, 135) emphasize in their influential study of the politics of classification, a system of diagnoses like the ICD performs an enormous amount of ‘infrastructural work’, undergirding many other systems and processes, and ‘facilitat[ing] the coordination of work among multiple agencies’.

For these reasons, the transition from one edition of the ICD to another is a significant undertaking. My focus is on the process leading to the adoption of the latest revision, ICD-11.² Specifically, I examine the noteworthy fact that among the handful of chapters that appear in ICD-11 for the first time, one is a chapter devoted to ‘conditions related to sexual health’. For proponents of medical and social attention to sexual health, this is a remarkable achievement considering that the total number of chapters is fairly small − there were only 22 in ICD-10, and there are only 26 in ICD-11 − and especially considering that the phrase ‘sexual health’ did not even appear in ICD-10.³

Sexual health is a recent concept, notwithstanding various genealogical precursors within medicine (Epstein, Forthcoming-a; see also Edwards and Coleman, 2004; Epstein and Mamo, 2017; Giami, 2002). A ‘working definition’ of sexual health was first developed under the auspices of the WHO in 1974 (World Health Organization, 1975). By 2002, that definition had been revised to characterize sexual health as ‘a state of physical, emotional, mental and social well-being in relation to sexuality [and] not merely the absence of disease, dysfunction or infirmity’. Furthermore, the achievement of sexual health presupposes ‘the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence’, and requires that ‘the sexual rights of all persons … be respected, protected and fulfilled’ (World Health Organization, 2006: 5).

This capacious definition − the product of much discussion and debate among a diverse and international group of proponents − authorized a proliferation of understandings of sexual health and initiatives to achieve it. The rubric of sexual health has provided a vehicle to address an array of medical and social problems, including sexually transmitted infections, sexual dysfunctions, sexual violence, and the pursuit of sexual and reproductive rights, and it has spurred projects that crisscross the worlds of science, medicine, governance, advocacy, consumerism, and self-optimization (Epstein, Forthcoming-a; Epstein and Mamo, 2017). Creating a chapter on sexual health within the ICD seemed, in part, like a way of bringing together, under one roof, a number of specific medical concerns that previously had been dispersed across the ICD − uniting them, but also rethinking them (Coleman et al., 2017). At the same time, given that the very definition of sexual health so clearly exceeded a biomedical remit, the door was open from the beginning for considering the sexual health chapter from the combined standpoint of medical science, politics, and ethics.

I argue that the assembly of the new chapter proceeded through the deliberate yoking together of scientific rationales with those based on ethics and politics − especially, considerations related to the advancement of human rights, which afforded a pathway toward the depathologization of certain conditions and categories. While maintaining a sense of a clear distinction between ‘science’ and ‘ethics and politics’ as different sorts of things, the proponents of classificatory reform appealed to them in concert and emphasized their alignment as they argued for their positions. The case therefore provides insight into what might be called ‘cultivated co-production’: situations in which scientific authorities transparently establish a constitutive link between scientific innovation and new sociopolitical arrangements and find it strategic not to maintain distance between ‘science’ and ‘politics’.

Classification systems: Rethinking co-production

Scholars of classification systems have often maintained that classification is a form of power: systems of classification reflect prevailing hierarchies and dominant beliefs, and they serve to shape both moral and social order (Bourdieu, 1985; Douglas, 1979; Foucault, 1973). In their canonical work, Bowker and Star (1999: 53–161) treat ICD-10 as a quintessential example in an extended case study that occupies three chapters of their book. For Bowker and Star, who emphasize the pragmatic character of the decisions that shaped the ICD’s internal logic, the ICD’s organization and wording encapsulate − but also hide from view − ‘a series of technical, social, political, and economic decisions taken at different moments’ (Bowker and Star, 1999: 111). Indeed, the ICD ‘can … be read as a kind of treaty, a bloodless set of numbers obscuring the behind-the-scenes battles informing its creation. This dryness itself contains an implicit authority, appearing to rise above uncertainty, power struggles, and the impermanence of the compromises’ (Bowker and Star, 1999: 66).⁴

Bowker and Star may be right to describe an existing version of the ICD as a classification system where the politics have been carefully scrubbed away, leaving behind only the formalism of alphanumeric codes and technical descriptions. Yet, the debates over changing the ICD may bring political and ethical considerations into the foreground in ways that, especially nowadays, no one seeks to hide. That experts involved in revising the ICD would seek, publicly, to align a scientific and social agenda is surprising: It runs contrary to scholarship on a different nosology − the DSM − that, overall, shows how experts seek to underscore the scientific and evidence-based status of the instrument, at least in their public discourse (Kirk and Kutchins, 1994; Whooley, 2014, 2016).⁵

The overtness of the political and the ethical dimensions of classificatory change in this case prompts a revisit of the literature on co-production. As defined by Jasanoff, co-production

is shorthand for the proposition that the ways in which we know and represent the world (both nature and society) are inseparable from the ways in which we choose to live in it. Knowledge and its material embodiments are at once products of social work and constitutive of forms of social life; society cannot function without knowledge any more than knowledge can exist without appropriate social supports. (Jasanoff, 2004a: 2–3)

This core insight draws on the canonical STS scholarship of Shapin and Schaffer (1985: 15), who argued that ‘solutions to the problem of knowledge are embedded within practical solutions to the problem of social order, and that different practical solutions to the problem of social order encapsulate contrasting practical solutions to the problem of knowledge’.

Jasanoff characterizes co-production as a broad explanatory ‘idiom’ and not a formal theory, and she pointed to a range of approaches in the scholarly literature. For example, scholars influenced by Latour (1993) have used a co-production angle to demystify the everyday presumption that ‘science’ and ‘society’ are wholly separate domains by revealing the continual work involved in ‘reinscribing’ the divide between the natural and the social (Jasanoff, 2004b: 21). By contrast, other scholars are less interested in demystifying an apparent metaphysical separation between science and society than in simply demonstrating the necessary connections across domains: for them, ‘nothing significant happens in science without concurrent adjustments in society, politics or culture; similarly, intransigent social problems seldom yield to resolution without changes in existing structures of knowledge’ (Jasanoff, 2004b: 21).

With either approach, however, the presumption appears to be that scientific actors on the ground not only are invested in the maintenance of a distinction between ‘science’ on one side and ‘society, politics or culture’ on the other, but also will often go to some effort to keep the latter at bay lest it pollute the former. Indeed, in earlier work on regulatory science, Jasanoff argued that it was particularly in cases where science and policy were hardest to separate that scientists were most inclined to police the boundaries − ‘[posting] “keep out” signs to prevent nonscientists from challenging or reinterpreting claims labeled as “science”’ (Jasanoff, 1990: 236). On this reading, co-production is the secret that scientists keep under wraps (or is the process they may themselves not even notice). This understanding in turn assigns an important role to STS scholars: Their intellectual work reveals the hidden entanglement of the natural and the social, and brings the reality of co-production into the light of day.

Many co-production accounts by STS scholars have proceeded largely along these lines − and appropriately so, for the cases in question. In her analysis of the Human Genome Diversity Project as a stalled case of co-production, Reardon (2001) traces the failure of genetic scientists to recognize that the success of their scientific efforts required simultaneous attention to the domain of the social: Only by reworking various norms and practices, including ideas about consent and the nature of ‘groupness’, might the project have moved forward. Rather than acknowledge the inextricability of the natural and the social, the project leaders tried in vain to keep their attention strictly on genomics. Other co-productionist studies have pointed to various natural and social entities that are co-produced − search engines and visions of Europe (Mager, 2017); vaginal microbicides and gender and sexual ideologies (Montgomery, 2012); science and emotion (Pickersgill, 2012); sex differences and biomedical research policies (Pape, 2021) − but generally have characterized the actors either as being oblivious to the actual relations between ‘science’ and ‘society’ or as manifestly committed to keeping the ‘non-scientific’ out of sight.

While certainly useful in describing many situations, these analyses may be less helpful in explaining cases where experts, even while presuming an ontological distinction between ‘science’ and ‘the social’, nonetheless bring the two into a tight and overt relationship in order to extend scientific fact-making. Examples of the latter approach are not so hard to find: bioscientist proponents of the inclusion of women and racial and ethnic minorities in clinical research, who sought simultaneously to advance knowledge, end unfair exclusion, and reduce health disparities (Epstein, 2007), genome scientists studying racial differences who see themselves as self-consciously pursuing an antiracist agenda (Bliss, 2012), and, in various domains of technoscience, ‘practicing scientists and engineers [who] cite justice as an organizing theme of their work’ (Reardon, 2013: 177 [emphasis in the original]). Such actors may still be invested in traditional ‘boundary work’ (Gieryn, 1983) insofar as they keep the scientific and the social in separate ‘bins’. Yet they treat the scientific and the social not merely as alternative explanatory registers (Collins and Pinch, 1979) but as tightly intertwined components of persuasive argumentation. As a consequence, they overtly co-produce natural and social worlds.

Why might some actors engage in ‘cultivated co-production’ of this sort, bringing the co-constitutive character of the natural and the social into public view? When might such action be perceived as enhancing the authority and legitimacy of science rather than detracting from it or threatening it? The case study taken up in this article begins to shed light on these questions, and several aspects of it seem especially relevant for consideration. First, the case concerns an object − sexual health − that had already been constituted as hybrid and had been recognized by the WHO as involving matters of human rights and not merely issues of disease and dysfunction. The current ‘working definition’ of sexual health − not officially endorsed by the agency, but elaborated through a broad consultative process under its auspices and posted on its website − describes an intrinsic connection between sexual health and sexual rights; the latter are characterized as including rights to information and education, bodily integrity, partner choice, choice of whether to be sexually active, freedom from forced sex or marriage, reproductive choices, and the right to ‘pursue a satisfying, safe and pleasurable sexual life’ (World Health Organization, 2006: ch. 3). In short, the very idea of sexual health as endorsed (tacitly) by the WHO already transgressed the boundaries between biomedical judgment and matters of ethics and politics: The co-production ‘cat’ was already out of the bag.

Second, as I will describe, the WHO’s process for incorporating feedback and generating buy-in for the revision of the ICD reflected larger shifts in the worlds of medicine and public health, away from paternalism and toward a relatively recent emphasis on incorporating the perspectives of patients and of stakeholder communities (Brown et al., 2004; Epstein, 1996; Hess, 2004; Landzelius, 2006; Rabeharisoa et al., 2014). These developments have been well noted with reference to the evolving patient-provider relationship and the roles of patient advocacy groups in affecting the research process. They have been less well studied in relation to diagnostic categorization. However, Mottier and Duschinsky’s reflections on revision of the DSM apply equally well to the ICD:

The DSM-5 is very much a product of the twenty-first century: while the DSM still constitutes an authoritative source … for medical practitioners …, patients and advocacy groups nowadays talk back and voice criticism of the labels that are being applied to them. Indeed, such views were solicited as part of the process …, something which would have been unthinkable in the 1950s. (Mottier and Duschinsky, 2015: 1087; see also Barker and Galardi, 2015; Garrett, 2020)

Much the same was true of the ICD revision process, particularly in relation to gender and sexuality. In this case, both insiders and outsiders sought classificatory reform and hoped to depathologize or destigmatize certain conditions or categories. However, the ‘categorizers’ and the ‘categorized’ did not necessarily agree on how best to pursue this goal, and the interpretations of those inhabiting the categories ‘looped back’ (Hacking, 2007) to affect the definitional process. In this environment, experts seeking to modernize the ICD found it helpful to appeal to both ‘scientific’ and ‘social’ rationales.

Finally, cultivated co-production in health and medicine is also consistent with important changes to the transnational authority structure of biomedicine in an era of evidence-based medicine, encapsulated by what Cambrosio and coauthors have called ‘regulatory objectivity’ (Cambrosio et al., 2006, 2009). At a time when medicine has become both more globalized and more rule-bound (Heimer et al., 2005), it has become increasingly common for global networks of health authorities to establish what are self-consciously understood to be conventions that ‘create the conditions for a clinical objectivity that relies on the existence of entities produced and maintained far outside the intimate encounter between doctor and patient’ (Cambrosio et al., 2006: 197). Specifically, Cambrosio and coauthors argue that medical practice increasingly is regulated by a variety of means, both formal and informal, that include ‘national and transnational clinical trial systems (including “meta-analyses”), clinical practice guidelines, consensus conferences, the establishment of national and transnational classification systems, quality assessment schemes and bio-medical standards and models’ (Cambrosio et al., 2009: 653). These intentional arrangements ‘break down the porous barriers between medical and political institutions and give rise to hybrid initiatives’ (Cambrosio et al., 2006: 197).

Through these negotiations, ‘biomedicine suspends the search for “true values” and replaces it with the establishment of conventions’. The emphasis on rules and conventions then proves especially useful in managing conditions of uncertainty, where evidentiary claims provide incomplete guidance (Garrett, 2020; Moreira et al., 2009). In these biomedical contexts, it becomes ‘less important to arrive at a truth … than to ensure compatibility’ and standardization across different domains, scales, laboratories, clinics, and others sites of biomedical investigation and practice (Cambrosio et al., 2006: 195). Drawing on Daston and Galison’s (2007) typology of different historical modes of objectivity, Cambrosio and coauthors have characterized this kind of objectivity as ‘regulatory objectivity’ − a distinct variety dependent on the collective production of evidence.

Diagnostic nosologies function in much this way and fit the rubric of regulatory objectivity (Garrett, 2020; Knaapen and Weisz, 2008): they seek to establish ‘diagnostic liquidity’ (Lakoff, 2005) not through a claim to universal truth but rather through the adoption of an accord that will permit diagnoses to travel. For my purposes, the point is that actors working in domains that explicitly or implicitly treat truth as a matter of convention may be less likely to hold an investment in maintaining distance between ‘science’ and ‘society’ than those who see diagnostic truth as inhering in nature: In the former case, the participants may be more comfortable with the presumption that such truths emerge through socially orchestrated engagements with nature.

The sexual health chapter of the ICD thus emerges as a likely candidate for cultivated co-production. I now turn to an examination of how co-production was cultivated in this case.

Collaboration and the politics of transgender health

In preparing for the ICD-11 revision, the WHO created ‘topic advisory groups’ within different agencies of the WHO. Two of those advisory groups − reporting to the Department of Mental Health and Substance Abuse and the Department of Reproductive Health and Research, respectively − found themselves considering an overlapping set of issues involving gender, sexuality, and reproduction. While the Department of Mental Health and Substance Abuse had expertise on psychological issues related to sexuality and sexual ‘disorders’ of various kinds, the Department of Reproductive Health and Research not only addressed reproductive health issues but also had become the locus within the WHO for initiatives related to sexual health. Indeed, in 2020 it formally became the Department of Sexual and Reproductive Health and Research, with the new name underscoring the idea of a close linkage between sexual and reproductive health concerns that had already defined the department’s work in practice (Interview with Gonsalves).⁶

The two topic advisory groups therefore collaborated in appointing a joint Working Group on Sexual Disorders and Sexual Health. In the ICD development process, working groups are intended to bring together internationally recognized experts and incorporate the perspectives of relevant stakeholders. According to Doris Chou, a medical officer in the Department of Reproductive Health and Research who served as a liaison to the Working Group, this particular group functioned as a ‘meeting point’ for professionals with mental health backgrounds and those with expertise in genitourinary medicine (Interview with Chou).⁷ Thus, in addition to what Chou described as the usual emphasis on diversity by gender and geography in WHO working groups, the Working Group on Sexual Disorders and Sexual Health spanned multiple specialty areas. Functioning as a ‘trading zone’ for scientific communication (Galison, 1999), the Working Group promoted ‘mutual teaching and collaborative learning’ across domains of professional expertise (Interview with Chou).⁸

The Working Group found itself confronting a distinctive ‘intellectual opportunity structure’ (Waidzunas, 2013) in relation to questions of gender and sexuality. Indeed, crucial to the origins of the chapter on sexual health was − somewhat surprisingly − a specific set of debates about transgender health. These debates arose because individuals desiring medical services relating to gender transitioning, including gender-affirming hormone therapies and surgeries, have long found themselves caught on the horns of a dilemma. On the one hand, they have fought against a stigmatizing portrayal of transgender people as suffering from a mental illness or delusion − a belief that was routinely espoused by many physicians and mental health professionals in the twentieth century (Meyerowitz, 2002). On the other hand, transgender people are deeply dependent on medical and mental health professionals, who, in many or most legal jurisdictions, stand as gatekeepers between them and desired services and statuses, both medical and non-medical. Specifically, transgender people may need to be assigned a diagnosis in order to qualify for gender-affirming procedures (or be reimbursed for them, in cases where health insurance covers such procedures) or in order to amend birth certificates and passports or defend legal rights (Spade, 2006; Stryker, 2008). Therefore, transgender people have had to engage strategically with medical categorization (Gonsalves, 2020; Hanssmann, 2017; Johnson, 2019, Psihopaidas, 2016; Zuiderent-Jerak and Jerak-Zuiderent, 2016) − often acquiescing to, yet also resenting, a characterization of themselves as having a medical or mental health condition (Ashley, 2019a; Stone, 1991). In ICD-10, this characterization took the specific form of a grouping within the chapter on mental and behavioral disorders called ‘gender identity disorders’, and within it a category called ‘transsexualism’: ‘a desire to live and be accepted as a member of the opposite sex, usually accompanied by a sense of discomfort with, or inappropriateness of, one’s anatomic sex, and a wish to have surgery and hormonal treatment to make one’s body as congruent as possible with one’s preferred sex’.⁹

Yet with the rise of a global grassroots movement for ‘trans depathologization’, advocacy groups increasingly took aim at stigmatizing medical diagnoses, as well as at the presupposition that a diagnosis should be required as a prerequisite for obtaining needed health services (Ashley, 2019b; Cabral Grinspan, 2017; Davy et al., 2018; Riggs et al., 2019). In 2012, in response to many years of lobbying by transgender activists, the American Psychiatric Association announced that it would remove ‘gender identity disorder’ from the DSM, and that DSM-5 would instead include ‘gender dysphoria’ as a diagnosis available for those displaying ‘a marked incongruence between one’s experienced/expressed gender and assigned gender’ (Beredjick, 2012; see also Riggs et al., 2019). While activists welcomed the departure of the formal designation of trans identities as ‘disordered’, many considered it a ‘pyrrhic victory’ (Garrett, 2020): the new diagnosis not only continued to view transgender people as meriting a psychiatric designation but also located the ‘problem’ within them as reflected in their ‘dysphoric’ response to their gender assignment (Ashley, 2019b). Still, as Garrett (2020) has argued, the change in terminology in DSM-5 indicated an important if incomplete shift among medical experts, away from viewing gender in strictly binary and categorical terms and toward an appreciation of gender as a domain of natural variation.

These complicated developments placed squarely on the table the issue of how ‘gender identity disorders’ would be handled in the ICD. One question, clearly, was what terminology to use. But, whatever this category might be called, a second question immediately arose: Could it be removed from the chapter devoted to ‘mental, behavioural, or neurodevelopmental disorders’ (hereafter: the mental disorders chapter) − and if so, where might it happily live? What would be a medically appropriate home, and what would be the least stigmatizing association possible? In this regard, the revision of the ICD presented pathways for depathologization that are absent from the DSM revision process. After all, any condition listed in the ‘Diagnostic and Statistical Manual of Mental Disorders’ is presumptively a mental disorder, and therefore the only clear way to depathologize a diagnosis is to remove it from the DSM altogether. By contrast, because the ICD includes all varieties of medical conditions, it is possible to ‘de-psychiatrize’ a condition without demedicalizing it, simply by moving it out of the mental disorders chapter. And, because the ICD is intended to cover the full gamut of patients’ engagement with the health care system − again, the full name is the ‘International Statistical Classification of Diseases and Related Health Problems’ − the fact that a category is included in the ICD certainly implies a medicalized status but does not necessarily tag it as a disease as such. Indeed, the ICD contains many codes for health-related issues that are understood not to be diseases, including ‘contact with health services for concerns about pregnancy’ and ‘contact with health services for immunizations’.

To the reform-minded experts in the Working Group, transgender health issues seemed in this respect similar. As Chou explained: ‘The transgender concern largely allowed us to say, “This is an example of where we need to put things in a classification that are not necessarily what we call or consider, from a clinical standpoint, … a disease”’ (Interview with Chou). However, others disagreed and argued that simply locating any identity within the ICD was in effect to spoil that identity (Goffman, 1963) by medicalizing it. ‘[The] ICD will destroy any good name that you put there’, was the pithy assessment offered by Mauro Cabral Grinspan, the executive director of Global Action for Trans* Equality (GATE) and a longtime activist on transgender and intersex issues (Interview with Cabral Grinspan).

Although transgender experiences have come to be understood principally as a question of gender identity, not sexuality, the growth of an infrastructure around sexual health within the WHO afforded a specific opportunity. At the same time, the perceived need to find a place to locate a transgender category provided an impetus to think about other categories that might be housed alongside it. Eli Coleman, sexologist and former president of the World Association for Sexual Health and a close observer of the process, goes so far as to claim that ‘the [sexual health] chapter came about because of the dilemma of “transsexualism”’, and that, ‘knowing that they can’t just have one diagnosis in [the chapter], the brilliant idea was to really start to put [in] all the various conditions to protect this whole chapter’ (Interview with Coleman).

Coleman’s claim may be overstated, but, in essence, the desire to ‘de-psychiatrize’ transgender health issues converged nicely with a simultaneous commitment to further solidify sexual health as a distinct area of concern within the WHO. WHO staff members later described the decision:

Taking into account the definition of sexual health and the need to measure sexual health, experts proposed the creation and inclusion of a new chapter on sexual health within ICD-11. Presenting the concepts within one chapter helps to better define the realm of sexual health and facilitates related specialized tabulation of data. (Chou et al., 2015: 187)

Thus sexual health concerns would no longer be scattered across different domains of the ICD but would be gathered together into one easily-referenced chapter.

Transnational participatory politics and the focus on human rights

As the dilemma of how to categorize transgender health issues suggested, many of these disparate concerns attracted public attention. Alongside the encounters across expert professional communities, certainly one of the most distinctive features of the Working Group process was the presumption of a public voice in the revision process, at least in the form of ‘active input from multiple global stakeholders’ (Fuss et al., 2019: 233): ‘Submission of proposals for revisions to ICD-10 had been encouraged by WHO beginning in 2008 and could be submitted in three languages. Proposals … were received from a variety of scientific societies, professional associations, and advocacy organizations, as well as from several individual experts’ (Krueger et al., 2017: 1530). To be sure, Working Group meetings themselves were essentially closed to the public, and openings of the process to public comment were carefully managed: Cabral Grinspan of GATE described being invited to one meeting in Geneva in 2012 to give a short presentation, and then being ushered out before the ensuing discussion (Interview with Cabral Grinspan).

However constrained, the inclusion of voices such as Cabral Grinspan’s reflected the participatory turn in the worlds of medicine and public health: It has become de rigueur to invite the perspectives of patients and of stakeholder communities (Brown et al., 2004; Epstein, 1996; Hess, 2004; Landzelius, 2006; Rabeharisoa et al., 2014). The inclusion of research and opinions offered by members of trans communities and advocacy groups is a clear illustration of these trends. As Davy and coauthors have described, in reference to both DSM-5 and ICD-11, ‘Including research and opinions from medical stakeholders, members of trans communities and political advocacy groups seems to be a novel method of creating diagnoses for trans people…. Internal workgroups from the APA and WHO were tasked with developing diagnoses that reflect trans people’s medical, economic and social lives’ (Davy et al., 2018: 15).

In the case of the ICD, regional networks of activists working on transgender issues − including GATE (registered in the United States), Iranti and Gender Dynamix (based in South Africa), Akahatá (a Latin American network), the Asia Pacific Transgender Network (based in Thailand), and Transgender Europe (TGEU, based in Germany) − took advantage of any openings provided them to make the case for depathologization (Interview with Cabral Grinspan). Cabral Grinspan recalled sitting down with WHO employees as early as 2011, at an international meeting convened by the Dutch government, ‘to start the conversation about what we wanted or what was possible in the ICD’ (Interview with Cabral Grinspan). Two years later, GATE organized a follow-up meeting that WHO officials attended, though only informally and without representing the agency. In these conversations, transgender activists were able not only to press for specific changes in the ICD, but also to emphasize, as Cabral Grinspan put it, ‘the power that classifications have to frame our world [and shape] the way in which people understand us’ (Interview with Cabral Grinspan). As an Argentinian, Cabral Grinspan was also well situated to emphasize the lessons of that country’s progressive Gender Identity Law, adopted in 2012: By eliminating the need for a diagnosis in order for transgender people to receive access to legal recognition, surgeries, and hormones, the law ‘allowed us to tell WHO that depathologization was possible’ (Interview with Cabral Grinspan).

In addition to opening the process to a range of viewpoints, Working Group members also emphasized that their classificatory work was ‘undertaken with awareness of the human rights standards endorsed by the United Nations’ (Krueger et al., 2017: 1530). In their published commentary on the revision process, these experts made frequent allusions to the recent history of social change in relation to gender and sexuality as well as ethical considerations in that domain, though always in ways that aligned the social and ethical concerns with the scientific character of the project. From Eli Coleman’s perspective, the formal endorsement of human rights as a criterion for assessing recommendations reflected the ascendancy of the idea, long promoted by the World Association for Sexual Health, that sexual health and sexual rights go hand in hand − and the percolation of that perception through the WHO’s Department of Reproductive Health and Research:

By then the [Department] had really embraced the concept that the only way they could promote reproductive health was through human rights. There was a clear understanding that they were going to examine these diagnoses, not just from a mental health or scientific perspective, but from a rights perspective. (Interview with Coleman)

Here, the WHO’s point of view was ostensibly global, but as perceived from the vantage point of dominant institutions that valorized human rights, such as the United Nations. Yet at least one Working Group report simultaneously referenced both the UN High Commissioner for Human Rights and the ‘Yogyakarta Principles’ as having codified the ‘emerging human rights standards’ that the group invoked as necessitating diagnostic reform (Reed et al., 2016: 216). This reference to the Yogyakarta ‘Principles on the Application of International Law in Relation to Issues of Sexual Orientation and Gender Identity’ is significant because of the latter principles’ specific focus on gender and sexuality, which are deemed ‘integral to every person’s dignity and humanity’ (The Yogyakarta Principles, 2007: 6). Furthermore, the Yogyakarta Principles were produced by a diverse group of activists and experts who convened in Indonesia in 2006, half of whom came from the Global South or non-Western countries (Balzer and Lagata, 2014). Therefore, this document is less susceptible to the suggestion that it hegemonically construes ‘human rights’ from a Global North perspective.¹⁰ The Yogyakarta Principles are often invoked by advocates of depathologization in relation to gender and sexuality because they include the insistence that ‘a person’s sexual orientation and gender identity are not, in and of themselves, medical conditions and are not to be treated, cured or suppressed’ (The Yogyakarta Principles, 2007: 23).

Sexual health in ICD-11

Drawing, therefore, on what they termed ‘current scientific evidence, best clinical practices, and human rights considerations’ (Reed et al., 2016), the Working Group appropriated and repositioned − and in some cases also redefined or even eliminated − conditions that had been listed elsewhere in ICD-10, so as to build a new chapter of conditions related to sexual health (Reed et al., 2016). Upon completing its work, the group reported back to the two topic advisory groups, which in turn made recommendations to the ICD Secretariat at the WHO.

In its final form as approved by the World Health Assembly, the new chapter (which is slight in comparison with most others in the ICD) contains five general groupings of sexual health concerns: sexual dysfunctions, sexual pain disorders, gender incongruence, changes in female genital anatomy, and changes in male genital anatomy. Several additional groupings housed in other chapters of the ICD are also cross-listed in the sexual health chapter − or in the lingo of the ICD, for these categories ‘conditions related to sexual health’ serves as a ‘secondary parent’. For example, the various sexually transmitted infections have a primary home in the chapter on ‘certain infectious or parasitic diseases’, but sexual health is a secondary parent. Similarly, the category of paraphilic disorders (which involve ‘persistent and intense patterns of atypical sexual arousal’) finds its primary home in the mental disorders chapter but secondarily appears under sexual health. The sexual health chapter is also a secondary parent for ‘contact with health services for contraceptive management’. Thus the kinds of conditions or issues that either are located directly in the sexual health chapter or that cross-reference it from elsewhere in the ICD are quite varied.¹¹

Below I discuss, in turn, two especially significant aspects of the differences between ICD-10 and ICD-11: the details of the changes in the medical management of transgender people, and a reworking of the paraphilic disorders. These classificatory changes offer insight into cultivated co-production, but they also demonstrate some of the limits to achieving diagnostic consensus at a global level.

Depathologizing transgender experiences

Rather than following the path of DSM-5 and replacing ‘gender identity disorder’ with ‘gender dysphoria’, the Working Group for ICD-11 invented the new category of ‘gender incongruence’.¹² Notably, gender incongruence is not a ‘disorder’, and is not located in the chapter on mental disorders. (However, gender incongruence is ‘secondarily parented’ by the mental disorders chapter, as well as by the chapter on ‘factors influencing contact with the health system’.)

Consistent with what I have termed cultivated co-production, the Working Group appealed overtly to both clinical and normative goals. The idea was to ‘preserve access to health services’ while mitigating the ‘doubly burdensome’ stigma that has resulted from the combination of hostility toward transgender people combined with negative attitudes toward the mentally ill: Such stigma ‘appears to have contributed to precarious legal status, human rights violations, and barriers to appropriate health care in this population’ (Reed et al., 2016: 209–210; see also Drescher et al., 2012: 573).

However, this category was one that attracted significant public input − the Working Group received 190 comments and proposals specifically related to gender incongruence (Fuss et al., 2019) − and trans activists did not necessarily embrace this co-production. A communiqué issued by the activist campaign Stop Trans Pathologization in 2013 criticized the language of ‘gender incongruence’, which appeared to pathologize those transgender people who had not fully transitioned, and which also seemed to imply the existence of ‘a normative state of “congruence”’ (STP ICSTP, 2013: 2). Of course, the simple fact that the institutional and medical constraints facing transgender people are not uniform around the world guarantees that no classificatory solution is ideal in all cases. Going further, there is good reason to be skeptical of the very idea that a single social identity and corresponding term − ‘transgender’ − can adequately and fairly capture the diverse embodied experiences of those non-cisgender and gender non-conforming people around the world who may seek medical intervention (Lynne, 2021; Valentine, 2007).¹³

From Doris Chou’s perspective, the phrase ‘gender incongruence’ was ‘maybe the least problematic’ option available in English, as well as the choice that best lent itself to non-stigmatizing translations into other languages (Interview with Chou). The Working Group also took the opportunity to modernize the language for describing gender issues, dispensing with terms such as ‘opposite sex’ and ‘anatomic sex’ and ‘using more contemporary and less binary terms such as “experienced gender” and “assigned sex”’ (Reed et al., 2016: 211). All these modifications reflected, in the words of the Working Group, ‘rapid change in social attitudes in some countries, and … controversy’; and the group noted having received commentary on transgender issues ‘from a wide range of civil societies, professional organizations, and other interested parties’ (Reed et al., 2016: 211).

To be sure, the placement of ‘gender incongruence’ in the chapter on sexual health was an imperfect choice and clearly a compromise. It folded questions of gender into the domain of sexuality, and it ‘de-psychiatrized’ trans issues while retaining a medical diagnosis as the gateway to care. From Cabral Grinspan’s perspective, the problem was that ‘the ICD doesn’t have a lot of rooms’, and the question was which ‘room’ might be least inhospitable. While many trans activists would have preferred a primary home in the chapter on ‘factors influencing contact with the health system’, this placement would not have guaranteed health insurance coverage for gender-affirming treatments − not a concern in Cabral Grinspan’s home county of Argentina, thanks to the Gender Identity Law, but a powerful barrier in much of the rest of the world (Interview with Cabral Grinspan).

When the finalized version of ICD-11 was announced in June 2018, and again when the World Health Assembly voted to accept ICD-11 in May 2019, the de-psychiatrization of transgender people was among the most widely noted specific changes in the ICD as a whole. ‘Being transgender no longer classified as mental illness’ was the headline of a USA Today article that called the development ‘a key sign of progress for an often-marginalized community’ (Simon, 2018). Transgender advocacy groups by and large have treated the ICD-11 changes as a limited step in the right direction. But they have retained concerns about various issues of classification, including the vexed question of whether and how to diagnose gender-variant children (Winter, 2017). In 2018, Nua Fuentes, a Mexican activist with the Trans Pride World Platform, called the WHO action ‘positive’ but ‘incomplete’ and ‘nothing new’, while the group Stop Trans Pathologization pointed out that if medical gatekeeping were eliminated and trans-specific healthcare were provided freely, then the medical category would be rendered unnecessary (Plax, 2018; WHO still calls trans identity a disorder: Mexican activists, 2018). Thus the root problem, as Cabral Grinspan observed, was that ‘in some countries the right to health has been expropriated and [privatized] by insurance companies’ (Cabral Grinspan, 2017: 2505). A joint statement issued by nine organizations in 2019 explained that their reluctant acceptance of ‘a temporary and imperfect solution’ was ‘based on international solidarity and a strong shared commitment to continue to make submissions to WHO on alternative wording and criteria’ (Global Action for Trans Equality, 2019 [emphasis in the original]).

The reference to international solidarity in the statement highlighted the dilemmas that arise from the simple fact that the experiences of being ‘transgender’, and the institutional and medical constraints facing transgender people, vary considerably around the world, as do the gender and sexual identities and labels that people adopt for themselves (Lynne, 2021; Valentine, 2007). And this point, in turn, underscores a broader critique made by trans studies scholars: that a key consequence of the maintenance of diagnostic categories and clinical guidelines for transgender health experiences has been precisely the reinforcement of rigid, monotonic, and stereotypical conceptions of what it means to be trans (Latham, 2019; Plemons, 2014; Riggs et al., 2019; shuster, 2016; Stone, 1991). Thus, in the end, the cultivated co-production of a nosology and a human rights framework also reinvigorated a set of debates about the diverse meanings of gender and sexuality around the world, and about who is authorized to give voice to those meanings.

Atypical sexualities and the criterion of consent

An additional set of changes undertaken with the goal of destigmatization concerns the ‘paraphilic disorders’ − referring to so-called atypical sexual preferences − which are ‘secondarily parented’ in the sexual health chapter. While the Working Group concluded that, for practical reasons, the paraphilias ought to retain a primary location in the mental disorders chapter, it recommended that several of the paraphilias be eliminated or redefined (Reed et al., 2016: 212–216). Notably disappearing is a vestige of an earlier era: an ICD-10 diagnosis called ‘ego-dystonic sexual orientation’. The term originally marked a compromise following the contentious process by which homosexuality was removed from the DSM in 1973 − a consequence of social change within the psychiatric community propelled by disruptive activism by gay liberationists who targeted the American Psychiatric Association’s annual meetings (Bayer, 1981). The idea had been that while homosexuality per se was no longer to be considered an illness, people distressed by their unwanted same-sex desires could be diagnosed with ego-dystonic homosexuality and ‘treated’ for that condition (Waidzunas, 2015). The term did not survive in the DSM past 1987, but it remained in ICD-10 and consequently the diagnosis lingered for decades (Cochran et al., 2014: 674–675). But the Working Group took exception to the idea that mental distress resulting from societal discrimination should be classified as a mental illness:

There are several socially stigmatized conditions, such as physical illness or poverty, that are also likely to lead to distress. These conditions could be labelled ‘ego-dystonic’ to the extent that they are unwanted but the ICD does not treat such distress as constituting a mental disorder. (Cochran et al., 2014: 675)

Ultimately, the Working Group concluded that not just ‘ego-dystonic sexual orientation’ but the entire grouping of ‘psychological and behavioural disorders associated with sexual development and orientation’ to which it belonged should be deleted from the ICD. The Working Group argued that these categories lacked clinical utility, had not generated scientific publications, and failed to contribute to public health surveillance; moreover retaining them threatened to bring ‘suboptimal care’ to people with a same-sex orientation and could ‘also be construed as supporting ineffective and unethical treatment that aims to encourage people with a same-sex orientation to adopt a heterosexual orientation or heterosexual behaviour’ (Cochran et al., 2014: 676). Finally, ‘from a human rights perspective, the … categories selectively target individuals with gender nonconformity or a same-sex orientation without apparent justification’ (Cochran et al., 2014: 676). That is, the Working Group’s argumentation proceeded seamlessly from the scientific, to the practical, to the ethical, once again stitching these domains together and overtly co-producing natural and social order.

Certain sexual practices, such as pedophilia, exhibitionism, and voyeurism, also remained in ICD-11 as paraphilias, though only if the individual either acted on the impulse or was distressed by its presence. But as a general rule, the Working Group took a dim view of treating sexual predilections as diseases unless they involved coercion, harmed others, or risked significant injury or death. Consensual sadomasochism was therefore eliminated, but a new category called ‘coercive sexual sadism disorder’ was added to describe the ‘infliction of physical or psychological suffering on a non-consenting person’. Cross-dressing (‘fetishistic transvestism’ in ICD-10) was likewise removed, as was fetishism. ‘I think the [question] of “what is normal sexual behavior?” was a bit of a minefield’, Doris Chou observed: ‘So I think this is where the colleagues who were working in mental health made a bit of a distinction. If somebody was doing something of their own free will, with consent and without harm to anyone else, on the spectrum of things, it’s probably okay’ (Interview with Chou).

The emphasis on consent nicely signals the Working Group’s clear investment in normative and ethical concerns. The sexologist and sexualities scholar Alain Giami has highlighted the historical significance of the emphasis on the criterion of consent in ICD-11. For Giami, the emergence of new understandings of sexual health and sexual rights has coincided with the triumph of a ‘democratic normative model of sexual activity grounded in individual responsibility, communication, love, well-being, and respect for others’. This perspective displaced an older conception of sexual ‘normality’ linked to reproduction and replaced it with ‘a framework based on communication, individual freedom, well-being, and equality’. In this context, it became self-evident that ‘consent’ should serve as ‘the key criterion for distinguishing normal sexual activity and its variations from pathological and criminal forms’ (Giami, 2015: 1136). However, Giami may understate the significance of the selection of consent as the demarcator of normal sexuality in the ICD (and well beyond). Certainly from the vantage point of the United States, it is difficult to read this shift without reference to the charged critiques of sexual assault advanced by #MeToo feminists as well as the debates on college campuses about the adoption of policies of ‘affirmative consent’. Nowadays, the focus on consent is over-determined (Fischel, 2016; Halley, 2016).

Yet it is interesting, in that regard, to point to pushback against the triumph of consent. As Sam Winter, a member of the Working Group complained, the WHO ‘retreated somewhat from the Working Group’s original recommendations’ by adding an unwieldy grab-bag diagnostic category called ‘paraphilic disorder involving solitary behaviour or consenting individuals’ (Winter, 2017: 424). This designation was to be reserved for cases where ‘the person is markedly distressed by the nature of the arousal pattern and the distress is not simply a consequence of rejection or feared rejection of the arousal pattern by others’; or where ‘the nature of the paraphilic behaviour involves significant risk of injury or death either to the individual or to the partner (e.g., asphyxophilia)’.¹⁴ Still, in Winter’s view, ‘this diagnosis re-pathologises behaviour patterns the Working Group sought to depathologise’ (Winter, 2017: 424). Arguably, this overruling of the Working Group suggests some instability in the historical changes to which Giami has pointed, and indicates the contemporaneous presence of multiple understandings of how to locate the dividing line between normal and pathological sexuality.

Discussion

As made apparent by the Working Group’s frequent references to ‘civil society organizations’, the need to counter ‘stigma’, ‘human rights violations’, ‘harm to individuals so labeled’, etc., classificatory changes in the ICD reflected not just scientific concerns but also (as they noted) ‘major changes in social attitudes and in relevant policies, laws, and human rights standards’ (Reed et al., 2016: 205). Similarly, the substantial emphasis on consent as a criterion of normality indexed a complex negotiation among evolving medical, ethical, and political judgments. As opposed to those cases where experts make claims on what they take to be strictly scientific grounds and then, having done so, separately draw out the normative ‘implications’, this was a case where the scientific and the normative were jointly promulgated and jointly constituted. In deliberate fashion, expert proponents of reform sought to stitch together scientific and normative concerns in the hope of taking a progressive medical and ethical agenda in relation to gender and sexuality and making it workable on a global scale.

To be sure, the WHO as an institution was more timid than the Working Group and more concerned about the palatability of sexual health concerns to the diverse member states that would cast a vote on ICD-11. It is perhaps not surprising that the WHO’s 10-page memo introducing ICD-11 as an agenda item for voting bypassed the transgender health categorization issue entirely and made only a passing mention of the new chapter on sexual health.¹⁵ But the Working Group’s own publications are straightforward about their reformist intentions, both scientific and normative.

However, it is important to make two observations about the members of the Working Group and their collaborators within the WHO. First, while aligning science with ethics, they retained an investment in the idea that these two domains are formally and ultimately distinct. Second, they therefore would reject the idea that by engaging in this alignment they are calling into question the scientific character of nosological reform: ‘nothing unscientific is happening’ in this case, to borrow a phrase from Collins and Pinch (1979). That the scientific best way forward happened to mesh with human rights considerations was, to these reformers, a happy coincidence.

Indeed, Working Group members fundamentally saw nosological work as an evidence-based practice. Chou, for example, emphasized that diagnostic classification depends on ‘a scientific and technical rationale’ and ‘follows principles and has very strict rules’. Yet, when asked about the Working Group’s references to human rights, she observed:

I think there has to be an acknowledgement of the fact that science … has ethical principles − among which some have human rights bases. Although, as a scientist, you might not say, ‘I’m doing this because it’s a human right’ … in the end it helps to fulfill human rights …. (Interview with Chou)

In this sense, proponents of destigmatizing and depathologizing medical conceptions related to gender and sexuality perceived no conflict between the promotion of evidence-based medicine and the advancement of an ethics-based agenda for social reform. Again, the prior constitution of ‘sexual health’ as a hybrid entity possessing biomedical and social characteristics − and the institutional and infrastructural grounding of this hybrid object within the WHO’s Department of Reproductive Health and Research − helped to enable this strategic intertwining.

Scholars of diagnostic classification have shown how proponents of diagnostic change use scientific rhetoric and quantification practices in order to endow their arguments with legitimacy − perhaps especially in domains like the ‘psy’ sciences, where diagnosis may be perceived as ‘mushy’ and less easily standardized (Kirk and Kutchins, 1994; Whooley, 2014, 2016). While nosologists in other cases may also have political motivations in mind, including worries about how proposed classifications will be received, this case differs in describing a self-conscious effort to bring about progressive change by manifestly uniting the scientific, the ethical, and the political.

Rather than threatening the legitimacy of the scientific enterprise, cultivated co-production may allow the promoters of science to extend their cultural authority into new domains. While upholders of a purist conception of the autonomy of science might lament what they view as the ‘politicization’ of global health, it seems more useful to understand cases such as these, conversely, as instance of the contemporary ‘healthicization’ of politics and governance. That is, public health and medicine are increasingly understood to be domains in which a host of political problems can be worked out, including the nature of social justice, the boundaries of belonging, and the definitions of normality and abnormality (Epstein, 2007: 17–18). Consequently, in the process of aligning a classificatory revision with social reform, the co-productive enterprise takes on a proliferative character, where multiple entities are jointly produced. In this case, a nosology is co-produced with a set of understandings about sexual and human rights, but also with core beliefs about the very nature of gender and sexuality, and a reworking of the divide between the normal and the pathological.

However, these co-produced understandings are unstable, not least because of the substantial incursions made into biomedical worlds by commentators from beyond its immediate bounds. These developments testify both to new emphases on deference to so-called stakeholders and to the growing power of knowledgeable advocacy groups − uncredentialed ‘lay experts’ − to offer guidance that draws on hybrid mixes of experiential and official knowledge (Brown et al., 2004; Epstein, 1995, Forthcoming-b; Rabeharisoa et al., 2014). Here, again, transgender politics emerges as central to the story of the sexual health chapter as a whole: As Riggs and coauthors have emphasized, it is precisely ‘the traffic between clinicians, guidelines, and transgender communities’ − and not any monolithic definitional authority wielded by medical or psychological professionals − that now defines the production of knowledge, classifications, guidelines, and standards governing transgender health care (Riggs et al., 2019: 913; see also Garrett, 2020). Global transgender health advocacy is an exemplary case of the new models of confrontation and collaboration between experts and laypeople found cropping up, in varying forms, across the landscape of medicine and health care today. Therefore, while the revision of the ICD might appear as a totalizing project of global medical standardization, it has been fueled by the delicate interplay of a diverse set of actors, whose intricate negotiations not only leave openings for flexibility of interpretation but also seem to guarantee future contestation.

These interactions also suggest even more complex modes of co-production than this article is able to address. After all, the experts’ embrace of the ethical alongside the scientific, as described here, in some respects mirrors and inverts the embrace, by many contemporary health activists, of the scientific alongside the ethical. Such activists may employ the ‘credibility tactic’ of ‘yoking together methodological (or epistemological) arguments and moral (or political) arguments’ (Epstein, 1995: 420). These developments point to the possibility of conceptualizing cultivated co-production in even more expansive terms, with an eye to the diverse contributors who may ‘cultivate’ transparent connections between science and ethics from different directions in ways that may sometimes converge and sometimes diverge.

Given that ICD-11 will not take effect until 2022, it is too early to tell how far this case of cultivated co-production of diagnostic categories and norms and values will travel, or to what degree it will see uptake beyond the confines of the WHO. For that reason, this article has emphasized the intent of the Working Group, and I cannot make definitive claims about long-term effects. Yet the creation of a sexual health chapter (even a short one) clearly signifies the rise into prominence of the concept of sexual health − and therefore, the increasing impetus for global health institutions to attend to sexual and gender matters. Several considerations suggest the likely downstream significance of the chapter in shaping both biomedical and social order.

To begin with, the new package of diagnoses relating to sexuality and gender will serve as an ‘obligatory passage point’ (Callon, 1986; Latour, 1987) on the way to satisfaction of a diverse set of institutional imperatives and personal aspirations: It will permit patients to get treated, medical providers to get paid, researchers to conduct studies, and governments to organize healthcare service delivery. Of course, it is hard to know exactly how or to what degree the changes reflected in ICD-11 will affect everyday encounters between patients and providers. As Lakoff (2005) has observed about diagnostic systems, it is no simple matter to take the diverse life experiences of particular patients and render them ‘liquid’ − capable of conversion into a generalizable format that can travel around the world. In particular, it is hard to gauge what health providers will do with the diagnostic labels made available to them. One might assume that clinicians necessarily take their cues from formal nosologies, but studies have shown that clinicians often resist their logics or negotiate their use of them (Armstrong, 2011; Nelson, 2019).

Yet, well outside the micropolitics of encounters between patients and providers, the classification system holds significance for practices of measurement and monitoring at the scale of the nation, the region, and the globe. From the standpoint of the WHO, aspirations for the ICD are tightly intertwined with the goal of documenting progress toward broader institutional imperatives, such as the Sustainable Development Goals laid down by the United Nations: After the UN established the target of ensuring ‘universal access to sexual and reproductive health-care services’ as a component of Sustainable Development Goal 3, then finding ways to operationalize and measure sexual health took on importance within the WHO (Epstein, Forthcoming-a). Furthermore, ICD-11’s destigmatization of many conditions sends powerful messages that may reverberate much more broadly. This signaling effect of the ICD, which speaks to the cultural authority of the tool and of the WHO itself, may prove more enduring and significant than its impact on the diagnosing of individual patients.

Conclusion: Studying cultivated co-production

I have presented the creation of a new chapter on ‘sexual health’ in the recent revision of the ICD as a case of cultivated co-production. When is co-production more likely to be overtly and transparently cultivated? Under what conditions is cultivated co-production more likely to prove successful?

It is noteworthy that this case of cultivated co-production concerns a classification system. Nosologies are not a form of ‘basic’ research (where cultivated co-production would presumably be less likely) but rather scientific elaborations drawing on interpretation of findings from many previous studies. Moreover, classifications of human beings are especially prone to give rise to ‘looping effects’ (Hacking, 2007): disease nosologies may sort people into categories, but, given time, those who inhabit the categories may ‘talk back’ in ways that lead, ultimately, to classificatory reform. Therefore, the revision of a classification system may particularly lend itself not only to a presumption of public participation (however stage-managed or circumscribed) but also to a calculated assessment that overt appeals to political, ethical, and normative considerations will be useful in building consensus. Future research might usefully explore whether cultivated co-production operates similarly in other cases of human classification and differently in cases where human classification is absent.

Initiatives in the worlds of global biomedicine and global public health may be especially likely to be undertaken in the mold of cultivated co-production. If Cambrosio et al. (2006; see also Garrett, 2020; Knaapen and Weisz, 2008; Moreira et al., 2009) are correct in arguing that the objective character of global biomedical research and practice is increasingly linked not to ‘evidence’ in any simple sense but rather to a transnational network of consensus-making bodies that generate collective ‘conventional’ understandings rather than absolute truths, then cultivated co-production may seem more appropriate in that domain − less of a threat to the idea that ‘science’ must be kept at some remove from ‘politics’. Comparisons of co-production in biomedical and other domains may help clarify whether this holds − whether in certain scientific arenas, the protection of ‘pure science’ seems less necessary, and therefore co-production may more safely be pursued ‘out in the open’ without risking (indeed, perhaps extending) the legitimacy or authority of science.

The transnational character of the co-productionist effort in this case also raises interesting questions about pathways to ‘cultivation’ and the likelihood of success. In the design of the sexual health chapter in ICD-11, the ostensibly global nature of the tool posed clear complications. By maintaining that sexual classifications are universally applicable, ICD-11 reaffirms the tendency of its predecessors to assume that the process of arriving at a diagnosis can take place in ways that are essentially independent of particular social contexts of doctor-patient interaction. Yet such claims to universality inevitably collide with the ‘consistent finding of the history of science’ described by Bowker and Star: that ‘there is no such thing as a natural or universal classification system’, and ‘classifications that appear natural, eloquent, and homogeneous within a given human context appear forced and heterogeneous outside of that context’ (Bowker and Star, 1999: 131; see also Whooley, 2014: 93). We might ask how the unfolding of action at different scales − such as subnational, national, and transnational − affects co-production processes.

Compounding this familiar problem of universality are the global politics of gender and sexuality, with all of their ramifications. No doubt it can also be difficult to come to a global consensus about how to define measles, malaria or meningitis. But diagnoses related to gender and sexuality pose particular difficulties, as questions related to these topics are among those that the 194 member states of the World Health Assembly are most likely to disagree about in general. In a world of nation-states marked by sharp divisions (and conflicting laws) around issues such as homosexuality, abortion, contraception, premarital sex, gender equality, and transgender rights, coming to agreement on classifying sexual health conditions is fraught with complexity. Moreover, sexual and gender matters have been the occasion for global activism and advocacy that has questioned biomedical orthodoxies, and thus the voices at the table seeking to influence the process of classification are exceptionally diverse. Investigators of co-production might therefore consider whether certain hot-button topics, such as gender and sexuality in this case, pose distinctive opportunities and challenges for cultivated co-production efforts.

Footnotes

Acknowledgements

When I presented a version of this work at McGill University, two members of the audience made crucial suggestions that informed my framing of the argument here. I’ve been unable to determine their names − I hope they will read this and contact me! In addition to McGill, I also received helpful feedback from audiences at UCSD, Temple University, and Northwestern University. Finally, I am particularly grateful to the journal editors, Nicole Nelson and Sergio Sismondo, and the anonymous reviewers.

ORCID iD

Steven Epstein

Notes

Author biography

Steven Epstein is Professor of Sociology and John C. Schaffer Professor in the Humanities at Northwestern University. His scholarship has examined the politics of biomedical knowledge production, the impact of health activism, and the dynamics of sexuality, gender, and race in biomedicine. His new book, The Quest for Sexual Health: How an Elusive Ideal Has Transformed Science, Politics, and Everyday Life, will be published by the University of Chicago Press in 2022.

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