I had been eagerly anticipating the release of Sarah Richardson’s meticulously researched The Maternal Imprint: The Contested Science of Maternal-Fetal Effects (2021) for several years, and I was not disappointed. A leading feminist scholar of the history and philosophy of science, Richardson traces the scientific history of the idea that pregnant people’s bodies control the future health, character, and well-being of their offspring. She also explores how this science is translated into social messaging and shaped by social ideology. Richardson delves into the details of the methodology, motivations, results, and communication of the science of maternal influences. She reveals a history of shaky results, contested methods, and socially loaded messaging, unified by a sustained interest in framing maternal bodies as sites of risk and responsibility for birth outcomes.

A central narrative of the book is that the perceived location and mechanism through which pregnant bodies control fetal development keeps shifting around; over time, scientists have located this maternal influence in the uterine environment, the cytoplasm, the methylation of DNA, maternal nutrition, and even in the emotions, thoughts, and imagination of the mother, among other locations.^[1] Each time a version of the maternal influence hypothesis re-emerges, targeting a different bodily location and mechanism, it comes along with similar social messaging: pregnant people are distinctively responsible for the ‘quality’ of their children; their bodies are distinctive sites of risk, in need of social management; and their influence can be understood and controlled independent of the context in which they live. Given how many times this scientific hypothesis and its accompanying social messaging has died and been reborn, it is hard not to conclude, with Richardson, that background ideology compels us to keep searching for new stories that take this same form.

The idea that pregnant people’s bodies are understood as decontextualized and heightened sites of risk and responsibility for birth outcomes, in need of systematic discipline (both self-discipline and social discipline) in order to ensure their production of proper offspring, is one that has been explored in quite a bit of depth within feminist theory and reproductive ethics over the last thirty years. To name just a few, Barbara Duden’s Disembodying Women: Perspectives on Pregnancy and the Unborn (1993), Deborah Lupton’s “Risk and the Ontology of Pregnant Embodiment” (1999), Lisa Mitchell’s Baby’s First Picture: Ultrasound and the Politics of Fetal Subjects (2001), and my own Mass Hysteria: Medicine, Culture, and Mothers’ Bodies (2005) are all works firmly within this tradition. What is new about Richardson’s book is not the development and exploration of this cultural narrative and imaginary, but rather her rigorous and skillful analysis of the science that has grown out of and undergirded it. Richardson is a masterful writer, who makes scientific details comprehensible and fascinating. Her historical and epistemological analyses of exactly what shaped the science at each stage, what each scientific iteration did and didn’t manage to show, and how these different scientific movements were translated into public messaging, is sharp and compelling. Richardson shows us the inner workings of how scientific programs build momentum; how scientists make methodological decisions; and how results feed into ongoing research programs. From this book, we also develop a rich sense of just how much uncertainty is baked into the science of human development, and how both scientific and public excitement about a given research program are mostly independent of the success and security of the science that comes out of it.

The book traces 150 years of the history of the science of maternal influences, culminating in the current focus on epigenetics—which, like various past maternal influence theories, has ignited our broader social imagination. Epigenetics, roughly, is the study of molecular changes outside our DNA that control how genes express themselves. Environmental stimuli (such as stress) can cause changes in methylation, and thereby influence the expression of the genome: “Epigenetic markers that help determine whether a particular site on the genome is active or silent can change in response to environmental stimuli” (4).^[2] Epigenetics is, Richardson argues, double-edged, in that it helps us get past a reductive genetic determinism, but in doing so it risks real implications for reproductive autonomy (and, I would argue, autonomy more generally for people who are or can become pregnant) (7). One twist that epigenetics specifically adds to the long history of theories of maternal influence is that its effects are potentially intergenerational, so that now pregnant bodies are framed as responsible not for shaping only their children, but also a whole line of descendants. On the one hand, Richardson argues, epigenetics gives us a tool for taking seriously the social and environmental forces that can shape human development, by providing a mechanism by which they can do so through the medium of the pregnant person’s body. But ironically, on the other hand, a focus on epigenetics also directs our attention away from structural social and environmental systems, narrowing our focus so that we see only the privileged vector of the pregnant body and worry only about how to control that body. Richardson points out that epigenetics and kindred theories may spark social interest in protecting women’s well-being, because generally, healthy, untraumatized, and resource-rich women can provide better fetal environments. Thus these theories and the rhetoric that they give rise to may have a surface-level ‘feminist’ sheen to them. But this social interest in protecting women’s well-being extends only insofar as women are reduced to risky material environments–environments whose functioning it is socially important to maximize for the production of ‘valuable’ children and perhaps grandchildren.

One of the most powerful parts of the book is Richardson’s discussion of how our causal reasoning is never purely empirical, in the sense of being value-free, but rather always shaped by our judgments of salience, our assumptions about what needs explaining, framing effects, and social interests. As Richardson puts it, the “overwhelming focus on maternal pregnancy effects—in isolation from paternal, postnatal, and wider social and environmental factors in development—is based on implicit, often unquestioned starting assumptions about the causal primacy of maternal effects, relative to other possible factors, in producing later outcomes. These assumptions are entrenched at every stage of research design, analysis, publication, and public translation” (207). In fact, though, she reminds us, quoting Dorothy Roberts, that “the best predictor of health is an individual’s position in the social hierarchy” (209). Indeed, Richardson points out, epigenetics, for all the excitement it has generated, has led to close to no meaningful interventions during prenatal care (214). Its effects are small, not practical to control, and unclear. The social uptake of epigenetics, meanwhile, has been reductive, and has amplified its effects: news stories and science reporting frame the path from pregnant people’s behavior and ‘lifestyle choices’ to the ‘quality’ of their children as a single, unambiguous causal vector leading to macro effects. There is, Richardson points out, a very quick pipeline, that takes small and uncertain epigenetic effects and translates them into broad lifestyle advice for pregnant people (10). This rhetoric stigmatizes pregnant women who are not in a position to provide the ‘ideal material environment’ with their bodies, heightens anxiety during pregnancy, and implies a simplified story about individual responsibility.

The framing of the pregnant person as an environment whose purpose is to generate ‘quality’ children is literalized in much of our visual imagery of pregnancy. Richardson points out briefly that many images of pregnant people have no heads. More specifically, many human development diagrams consist of “a central, prominent profile of a transparent, nude, headless human female with an extremely pregnant abdomen containing an infant-sized fetus. Arrows flow into the abdomen, representing preconception and in-utero exposures, and then out of the abdomen” (205). This point about headlessness and the visual focus on the abdomen is worth more attention than it receives in the book. This visual trope is used not only in the context of science, but in representations of pregnant people—and particularly in representations of pregnant people engaged in ‘risky’ behaviors—much more broadly. This is easy to see for yourself: If you do a google image search on ‘pregnant’ or ‘pregnancy’, about half of the images you get will be headless and focused on the abdomen. If you search for ‘pregnant women,’ you get even a higher proportion of headless figures; apparently women who are pregnant consistently have no heads of interest. And if you add on keywords associated with fetal risk, such as ‘pregnant alcohol’ or ‘pregnant diabetes’ or, most extremely, ‘pregnant obese,’ you get a nearly unbroken parade of headless bodies. Often, if the relevant risk is from something consumed, like alcohol or drugs, the picture will represent the substance being directed right at the abdomen: for fun, google ‘pregnancy alcohol’ or ‘pregnant woman alcohol’ and note how many of the photos are of a wine glass being held right up against a headless pregnant abdomen, nowhere near the person’s mouth. And in images where the entire pregnant person, including the head, is represented, it is overwhelmingly often against a neutral, brightly lit, featureless background. We do not generally see pregnant people represented in their full living contexts, as individuals who are part of the social and material world, but rather as dehumanized and impersonal sites of reproductive risk and control.

I found Richardson’s arguments and analysis engaging and persuasive throughout. However, I do want to spend some time on what I saw as a somewhat surprising absence in the book, which strikes me as a crucial part of the story she is telling. What is missing, it seems to me, is attention to the role that disability and ableism play in both the scientific and social narratives around maternal influences. “Disability” and “ableism” receive no index entries in the book, and in fact the term “disability” along with its cognates only show up six times in the book, almost always just as a matter-of-fact mention of a disability as a possible birth outcome. Only once is the issue of disability framed as part of the larger political story, and here just in passing: “Eugenic-era prenatal advice to mothers and fathers also makes starkly clear the historical enmeshment of reproductive and genetic science in the politics of race, class, gender, disability, and nation” (107-8). Richardson does not further discuss or develop this inclusion of ‘disability.’ She nicely thematizes the racialization of our anxieties over maternal bodies and birth outcomes throughout the book, and race receives a chapter of its own, but the role of ableism receives no analysis. However, I believe that the story of these anxieties about maternal influences and birth outcomes, and the science that emerges out of them, is absolutely inextricable from our deep societal ableism and ongoing moral panic around disability.^[3] It seems to me that, especially given that most of the maternal effects we have discovered are small and uncertain, the whole project of framing maternal bodies as first and foremost sites of risk and responsibility cannot be understood except in tandem with the twin ideologies of ableism and disability-phobia.

It is not inherently ableist to want to have healthy children, and to take steps to avoid conditions that will cause suffering. But it is ableist to be obsessed with the idea of engineering ‘high quality,’ ‘high value’ children, and it is ableist to engage in moral panics over the ‘threat’ of the birth of disabled children. The history of scientific theories of maternal influence has been one of scientifically and socially framing the pregnant body as a control mechanism for avoiding disability and maximizing what are seen as desirable traits. From the beginning, concerns about the ‘maternal imagination’—that is, pregnant people’s supposed ability to mark the bodies of their children with things like birth marks and limb deformities if they had the wrong fantasies, emotions, or temptations—were deeply bound up with panic around ‘abnormal’ and disabled bodies, focused more on our fears around aesthetic monstrosity and disfigurement than with meaningful concerns about well-being.^[4] The recent moral panics both over thalidomide effects and over Fetal Alcohol Syndrome are each only comprehensible when we understand the deep fear and revulsion of disability that underwrote them—again, not because caring about fetal health is problematic, but because framing the disabilities that resulted from each as horrifying, tragic, and clearly a result of fundamental moral negligence reflects ideological ableism.

While eugenics, technically, is concerned only with the manipulation of the gene pool, it is clear that eugenic logic and a eugenic imagination pervade these scientific projects. Much of the rhetoric that Richardson unearths is not even directly about protecting well-being, but rather about not leaving fetal development up to “chance,” where uncontrolled human variation is portrayed as irresponsible and scary. The book is full of examples of scientists talking about “high quality offspring,” “high value females,” and the like. The entire project of figuring out ways of controlling the ‘maternal environment’ in order to intentionally and strategically produce ‘better’ or ‘higher quality’ children is a fundamentally eugenic project that, I suggest, can only be understood in terms of a contrast between derogated and undesirable disabled bodies and well-engineered ‘proper’ bodies.

I am interested in how ableism and fear of disability wind their way without direct acknowledgement through the story that Richardson tells, and infuse much of the rhetoric she quotes (My claim, to be clear, is not that Richardson’s own rhetoric is ableist!). For instance, she reveals a systematic fear of hidden and minute disabilities and imperfections that might compromise the normalcy or quality of a child even if they are undetectable. As one pediatrician that Richardson quotes puts it, “Just because the young of a deficient mother may appear externally normal doesn’t mean they are normal” (9). Richardson talks about “the specter of invisible, subclinical damage” (162) and the panic over “the difference between a kid who is going to average a B- rather than a B+” (178-9). This sort of quest, not just to avoid suffering, but to stamp out small or even imperceptible variations from the normal and the socially valued, has its roots not in reasonable concern for children’s well-being, but rather in a vision of a disability-free world and a neurotic fear of disability. Indeed, many of the outcomes that scientists seek to avoid through control of maternal bodies, including autism, obesity, and ADHD, are conditions that have been claimed by many as neutral variations and alternative forms of embodiment and cognitive functioning, which need to be destigmatized and supported rather than stamped out through eugenics or other forms of biodiscipline.

A different kind of ableism shows up in rhetoric that conjures the dehumanizing and derogating threat of a ‘wave’ or ‘flood’ of disabled babies, for instance in the fear of an “approaching wave of climate change babies bearing the imprint of prenatal exposure to weather disasters and presenting a wide range of health problems” (180, my emphasis).

On the other end, the rhetoric around maternal influences is also ableist in insisting that good, responsible mothers engage in regimes of eating, exercise, intellectual activities, and so forth that are unavailable to many disabled people, thereby casting them as unfit and irresponsible mothers from the start. Richardson mentions that these recommended routines require “money, freedom, and leisure” (70) and thus rule out many people, but “ability” should have a prominent place on this list as well. And while fat-phobia is not quite the same as ableism, it is a close and interlocked cousin, sharing with ableism a deep fear of and revulsion at bodies that do not present as ‘normal’ or meet social standards for what normative bodies should be like. And as Richardson makes clear (especially at 214-215), fat-phobia pervades the maternal influence discourse. We have a special obsession with what pregnant people eat, and with the denigration and distrust of obese mothers along with a collective horror at obese children.

To sum up, Richardson’s book is rigorous, entertaining, informative, and politically important. I have argued that it would have benefited from including a disability lens, but no book can do everything. The work is an important and very readable contribution to science studies, feminist theory, reproductive ethics, and philosophy of science.

Quill R Kukla
Georgetown University and Leibniz Universität Hannover

Notes

^[1] Not all pregnant people are women, thus I do not use the language of ‘pregnant women’ in this review. I do, however, use the terms ‘maternal’ and ‘mother,’ because the science under discussion consistently uses these terms to refer to the person who has eggs and a uterus and gestates a fetus. Gendered language is deeply imperfect; this is the compromise I have chosen. I do not mean to imply that all pregnant people who carry their children to term identify as mothers, as a social or as an embodied identity.

^[2] Throughout this review, all page numbers refer to Richardson 2021.

^[3] To be fair, when I wrote about these issues in Mass Hysteria (2005), I did not see myself how deep the connection was.

^[4] Richardson talks briefly about these early theories in this book. For a deeper dive, see my Mass Hysteria (2005), as well as Margrit Shildrick’s Embodying the Monster: Encounters with the Vulnerable Self (2001).

References

Duden, Barbara (1993), Disembodying Women: Perspectives on Pregnancy and the Unborn, Harvard University Press.

Kukla, Rebecca (2005), Mass Hysteria: Medicine, Culture, and Mothers’ Bodies, Rowman and Littlefield.

Danielle Spencer’s book, “Metagnosis: Revelatory Narratives of Health and Identity,” does many things. It is a work of autotheory, putting Spencer’s own embodied narrative in constant conversation with the testimony of others along with a remarkably diverse set of critical and theoretical approaches. In the book, Spencer coins a new term, “metagnosis”, which occurs when one is newly diagnosed in adulthood with a lifelong condition. The book explores Spencer’s own metagnostic experience involving her eyesight along with chronicling the experiences of others to highlight the ways in which newfound knowledge of a diagnosis can in itself transform us.

Born with strabismus – “misaligned eyes,” Spencer is practiced at negotiating the meaning of having a non-normative visual experience and presentation. For the most part, growing up with the condition and being constantly subject to medical attention because of it, Spencer remained largely unconcerned about whether or not she saw differently. But, as the book chronicles, in adulthood, after enduring subpar medical treatment and a series of frustrating surgeries, Spencer is additionally diagnosed with a different visual field condition, homonymous hemianopia, that was likely sustained in infancy, but which up until the diagnosis neither she nor her various doctors had detected.

Spencer describes how she discovers in her orthoptist’s office that she can see only half of the visual world of each eye. This discovery leads to a deep ambivalence on Spencer’s part – which includes feelings of physical vulnerability, shame that the condition had gone unnoticed for so long, as well as relief for not having to suffer through the stigma and exclusion that may have come with the additional medical diagnosis in childhood. It also leads to a theoretical examination of the limited narrative and theoretical resources that avail us in trying to make sense of such revelatory experiences and the frustrating inexplicability that such transformative experiences can have for others. This intimate narrative approach democratizes theory. As Spencer says near the end of the book, “[k]nowledge is not simply illuminated, but is itself profoundly informed by our way of looking.” [306] Metagnosis invites us to inhabit Spencer’s own way of looking as she engages in critical theoretical analysis of the epistemic and practical stakes related to medical diagnosis and other identity altering revelatory discoveries.

The book is also a work of profound interdisciplinary engagement, bridging conversations happening across siloed academic and cultural spaces. The book draws widely and creatively from biomedicine, medical humanities, philosophy, disability studies, cultural studies, literature, film, oral history, and personal narrative. Ultimately, Spencer argues that metagnosis, the experience, “is largely about navigating different forms of knowledge.” [20] The book critically interrogates the insights growing out of multiple disciplines with respect and attention; each of these disciplines is treated as a possible source of knowledge, albeit fallible and incomplete. It will be an important resource for readers from multiple perspectives.

Finally, the book is responding to a kind of epistemic injustice, that is, to a systemic and distinctive wrong done to people in their capacity as knowers and inquirers. [1] Specifically, the book habituates us as readers to attend to and work towards mitigating the hermeneutical injustice we (and others) may face as biomedical subjects – that is, as people to be diagnosed.  Hermeneutical injustice, a term popularized by Miranda Fricker and critically developed by theorists like José Medina, Luvell Anderson, and Kristie Dotson, is the phenomenon where a person is unfairly disadvantaged in their capacities to make sense of their own experience.[2] Hermeneutical injustice happens when certain stories remain untold, not merely because people are systemically excluded from and discredited within the collective discursive community, but also because – as a result of this exclusion and discredit – people lack the shared language to actually tell their stories in a way that makes sense to them.

At its core, the book’s project is to identify and provide a new shared language. The book offers us the narrative resources needed to make sense of a distinctive kind of diagnostic experience that has heretofore remained conceptually obscure and personally isolating. In naming the experience of metagnosis, Spencer writes, “we open a space for communalization, recognition, and critique.” [37] As a bioethicist by way of political and feminist philosophy, it is this last kind of engagement that I will focus on in the rest of this review.

So what is metagnosis? At its most abstract, metagnosis describes “any retrospective revelation pertinent to one’s identity.” [3] In the medical context, metagnosis can take place in two ways. First, it can occur when one is newly diagnosed with a long-standing condition that has remained undetected by the individual and by medical professionals, such as learning about one’s infertility or one’s colorblindness. Second, it can occur when one is newly diagnosed with a long-standing condition not because the “symptoms” had gone unnoticed, but because they were only recently treated as symptoms due to shifts in the “the diagnostic boundaries themselves.” [4] An example of this second form of metagnosis that is richly explored in the book is comedian Hannah Gadsby’s experience being diagnosed with Autism in adulthood.

It is helpful to tease out three co-constituents of the phenomenon of metagnosis. First, metagnosis is experienced as a revelation, not as a fabrication. Through metagnosis, one comes to attend to an existing feature of one’s own embodied life. Second, the revelation is retrospective; what is revealed is a long-standing condition, not some new physical change in one’s somatic experience onset by some recent event. One’s somatic experiences may change as one turns one’s attention towards certain features of embodiment that would have remained unnoticed without the new diagnosis. But the event that precipitates these somatic changes is the diagnosis itself. Third, metagnosis is a revelation that is pertinent to one’s identity. Not all medical diagnoses, even novel diagnoses of long-standing conditions, inform one’s identity, and the transformative impact of a medical diagnosis may be highly contingent and vary by person.[3] Metagnosis is meant to capture the experiences where a medical revelation has the power to rupture our sense of self and drives us to renegotiate how to move forward in the world given our somewhat altered social position.

These three features combine to articulate simultaneously the bewildering power that medical classification can have on us as well as the peripheral and limited nature of these biomedical distinctions. As for the power, nothing about us changes physically, but the newly revealed diagnosis can change our identity. It is the “knowledge that is transformative” [180]. As for the exposed limits of diagnosis, upon metagnosis we realize this condition has always been there in plain sight of the medical experts and they missed it and we have carried on.

So how does the idea of metagnosis do any work to counteract epistemic injustice on Spencer’s account? Spencer rightly clarifies that hermeneutical injustice does not necessarily lie in the fact that one has lived one’s life in the absence of diagnosis. She recognizes that some people experience a metagnosis as a result of lacking access to quality medical care or attention; however, she points out that many people “wish to remain unseen by the medical gaze” and seek acknowledgement of their embodied lives in communities outside of biomedicine, which is often “associated with stigma and diminished agency.” [38] Rather, the epistemic injustice toward which Spencer focuses our attention, and which requires response, is the “elision of the experience and implications of metagnosis itself…for those who confront the phenomenon have generally not had a sound hermeneutical space in which to tell and understand their stories.” [38]

The kind of elision of experience that Spencer has in mind is strikingly illustrated in her own story of revelatory diagnosis and how difficult it was to explain her newly discovered condition to even those who knew her well and were trying to be supportive. She describes one particularly frustrating interaction with a close friend. Given the absence of any recent change in her visual experience and the lack of any discernable effect of this condition on Spencer’s behavior and activity, her friend not only struggled to acknowledge the importance that this new visual diagnosis could have for Spencer’s self-understanding; more fundamentally, he couldn’t even bring himself to accept the biomedical evidence of the reality of this diagnosis – he refused to believe that she was really “half-blind”. Her friend’s rejection of both the importance and the reality of the new diagnosis illustrates what Spencer understands as the main challenge of metagnosis: if it is the noneventness of the diagnosis that can transform us, how can we begin to explain this transformation to others or even to ourselves?

At one point, as a strategy to deal with the perplexity that resulted in her describing her newly discovered condition to others, Spencer decides to stop trying to explain or explore the particulars of homonymous hemianopia. “Instead, I became interested in trying to account for this difficulty in accounting. Both to satisfy my own curiosity, and…to attempt to communalize the experience – this time, Reader, with you.” [115] There is a conspiratorial tone to Spencer’s writing. By generating for us a language from which to engage in conversations that were previously unavailable to us, she not only vindicates the experiences many have had with these sorts of retrospective revelations, she also provides for us a call to action or at least a call to conversation. With this newfound language, we can be invited to communalize what may seem like deeply personal and isolated events.

This is an effective strategy; as I was reading the book, I couldn’t help but start seeing metagnosis everywhere and felt compelled to talk about it with others. Over a bonfire this summer, I explained the idea to a friend and she shared a story of her own revelatory diagnosis. For a long time, she was diagnosed with asthma, but her treatment did not seem effective. Recently, after a set of frustrating specialist appointments, she found out that she had been misdiagnosed all these years – a phenomenon that may happen to up to a third of asthma patients[4] – and was instead diagnosed with Vocal Cord Dysfunction [VCD]. It is worth focusing on the details of the nature of VCD for a bit and on my friend’s experience with the diagnosis to highlight a potential concern that I have with Spencer’s account.

The prevalence of VCD remains unknown, but it is suggested that cases are undercounted in clinical practice. This is in part due to the fact that VCD was initially only thought to exist in the context of psychological illness, particularly when describing “hysterical women.” [5] However, in the past few decades, researchers have discovered that the condition affects a much broader patient base, with higher incidents among women, who remain misdiagnosed and improperly treated for years, incurring unnecessary medical cost and morbidities.[6] My friend’s doctor described the prototypical patient with VCD to be young, female, and driven.[7] The etiology of the condition is unclear, but VCD episodes can be triggered by stress or high intensity exercise. Thus VCD treatment is very different from asthma treatment and involves multimodal interventions that centrally feature speech and behavior therapy. Moreover, clinical guidelines note difficulty in identifying the condition in patients. Given its episodic nature, clinicians in part rely on the testimony of patients about the severity and experience of the episodes to identify cases. Given the population with the highest prevalence of the condition, it is thus not surprising that past names for VCD have included, “facetious asthma”, “Munchausen’s stridor”, and “emotional laryngeal wheezing.”

Although the symptoms of VCD did not go unnoticed by my friend (she was after all seeking out specialists to relieve her of breathing difficulties), the significance of her symptoms and what they potentially said about her identity remained inscrutable. My friend’s ordeal thus seems very much akin to the second type of metagnosis that Spenser outlines, where recent shifts in diagnostic boundaries – from viewing VCD as afflicting “hysterical women” to a larger population, particularly “highly competitive and success oriented” women – lead to revelatory self-knowledge. Like in many of the narratives chronicled in the book, news of this diagnosis was met with some ambivalence on the part of my friend. She was relieved, not only because the new diagnosis opened up the opportunity for effective treatment, but also because the new diagnosis clarified things to her in a deeper way. On the other hand, it was also not lost on my friend how gender, testimonial injustice, and mental health stigma have slowed research and clinical practice related to VCD and thus obscured this diagnosis for so many for so long. Both perspectives featured centrally in her story. So it seems that the diagnosis of VCD presented itself as an instance of metagnosis insofar as it was experienced “as a rupture in our habitual ways of categorizing ourselves and our experience.” [251] My friend saw herself as newly inducted in the VCD club, historically undertreated and dismissed, and now feels the mandate to share her revelation with other friends, especially if they are young women, in case they too fit the bill.

The revelatory power of VCD for my friend mirrors some of the features of Hannah Gadsby’s adult diagnosis of Autism, which Spencer examines compassionately at the end of the book. Spencer suggests that Gadsby’s performances in Douglas and Nannette can serve as exemplary models for how to productively use revelatory diagnoses as opportunities to renegotiate our identities in relation to how we are medically categorized. Surprisingly, at the close of her examination into Gadsby’s work, Spencer writes, “Ultimately, I propose, all diagnosis can and should be metagnosis, such metafictional diagnosis will help us to move past the often all-too-reductive realism of biomedicine, illuminating its naming authority and questioning its exclusivity.” [307]

While I appreciate the importance of moving away from biomedicine’s exclusive claim to epistemic authority in the realm of diagnosis, I am skeptical about the proposal that all diagnosis can and should be metagnosis. First, saying that all diagnosis should be metagnosis seems to undermine the distinctive nature of the experience that is so forcefully explored in the book. I worry that expanding the concept may undermine its usefulness and galvanizing power to those who have experienced such revelatory transformations.

Second, if we pay attention to the material and social conditions that give rise to metagnosis, we should at least be wary of universalizing the experience. While it need not be the case, it will likely be the case more often than not that metagnostic experiences grow out of situations in which people have had to deal with sustained and systemic medical mistreatment or inattention. This seems to be true of the three cases highlighted in this review. Spencer’s visual field revelation, my friend’s diagnosis of VCD, and Gadsby’s autism diagnosis all likely were in part the result of inattentive or subpar medical treatment. While not highlighted in the book’s discussion of Hannah Gadsby’s performance of Douglas, there is a moment in the show in which Gadsby articulates the way in which gendered stereotypes accompanying autism make diagnosis more elusive: “My issue was I didn’t understand enough about autism to understand how I could have autism. Because what we popularly understand autism to be is just something that only affects young boys that like maths a lot. And, to this day, neither of those things apply to me.”[8] Not only are these stereotypes salient for those subject to diagnosis, they are also pervasive amongst clinicians, leading to an elevated risk of underdiagnosis or late diagnosis for girls who meet the criteria for autism spectrum disorder.[9]

As Spencer makes clear, early diagnosis is not necessarily advantageous without access to social and biomedical support. However, adult diagnosis of a long-standing condition, especially if this is more prevalent in minoritized populations, is evidence that something systemic has gone wrong in biomedicine. We should be sensitive to the fact that metagnosis is often the result of some combination of medical racism, sexism, classism, fatphobia, and ableism. The idea of metagnosis can provide for us important generalizable lessons for how to go about negotiating our social identities and conceptions of health without everyone having to undergo a metagnostic rupture themselves.

Dana Howard
The Ohio State University
Columbus, OH

References

[1] Fricker, Miranda. Epistemic injustice: Power and the ethics of knowing. Oxford University Press, 2007.

[2] Medina, José. The epistemology of resistance: Gender and racial oppression, epistemic injustice, and the social imagination. Oxford University Press, 2013. P. 91. Dotson, Kristie. “A cautionary tale: On limiting epistemic oppression.” Frontiers: A Journal of Women Studies 33.1 (2012): 24-47. Anderson, Luvell. “Hermeneutical impasses.” philosophical topics 45.2 (2017): 1-19.

[3] Barnes, Elizabeth. “Social identities and transformative experience.” Res Philosophica (2015).

[4] Aaron, Shawn D., et al. “Reevaluation of diagnosis in adults with physician-diagnosed asthma.” Jama 317.3 (2017): 269-279.

[5] Dunn, N.M., Katial, R.K. & Hoyte, F.C.L. Vocal cord dysfunction: a review. asthma res and pract 1,9 (2015). https://doi.org/10.1186/s40733-015-0009-z

[6] Traister, Russell S., Merritt L. Fajt, and Andrej A. Petrov. “The morbidity and cost of vocal cord dysfunction misdiagnosed as asthma.” Allergy Asthma Proc. Vol. 37. No. 2. 2016.

[7] Dunn, N.M., Katial, R.K. & Hoyte, F.C.L. Vocal cord dysfunction: a review. asthma res and pract 1, 9 (2015). https://doi.org/10.1186/s40733-015-0009-z

[8] Hannah Gadsby “Douglas” (2019)

[9] Loomes, Rachel, Laura Hull, and William Polmear Locke Mandy. “What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis.” Journal of the American Academy of Child & Adolescent Psychiatry 56.6 (2017): 466-474.

Joshua Mezrich is a practicing transplant surgeon who draws on his experiences, and those of his patients, to provide a “here’s where we’re at” moment in the story of transplant medicine. In so doing, he explains what it is like to practice while telling the stories of his patients, donors, and the pioneering surgeons who persisted in the face of failure to make what Mezrich does a work of healing. Written for a popular audience, When Death Becomes Life is perhaps the most accessible work yet on the modern history of organ transplantation and what the current “standard of care” actually looks like. Indeed, it rounds out a “trinity” of quality books about the transplant experience, this one from the surgeon’s experience — the other two being Kidney to Share (the living donor’s experience), and The Power of Two (the recipient’s experience).

The opening chapter provides a snapshot of the practice today. The teams get an evening call about a young motorcycle accident victim who died from a traumatic brain injury. On site, the competition between the “chest” and “abdomen” teams manifests in protectiveness over their “turf” — an ample portion of the inferior vena cava, for example. The donor’s chest is opened “stem to stern” and the abdominal organs are removed first, each of which is flushed with a cooling solution while buckets of ice are poured into the donor’s body along the way. After departing, Mezrich and his team find themselves flying in conditions that have grounded all other commercial aircraft. Although it threatens to end in catastrophe, their flight has emergency authorization to deliver the liver and kidneys to a sick diabetic who, meanwhile, is being prepped for surgery. That is just the beginning of a remarkable project that is not only useful for informing the public about how transplant medicine actually works (which is its primary value), but also illuminating for the history of research ethics as a case study about how the risks taken by the pioneering surgeons ended up being rewarded.

The book is a mix of history and memoir divided into six parts. Part one explains how today’s routine procedures were made possible by Alexis Carrel’s breakthroughs in stitching blood vessels together. Part two surveys the history of renal transplantation beginning with Willem Kolff’s early dialysis methods, continuing with Peter Medwar’s tissue-type discoveries, and ending with the first successful transplant performed by Joseph Murray between identical twins. Part three moves through the familiar story of heart transplants and the less familiar story of lung and pancreas transplants; the treasure in this section is the material drawn from the author’s interview with the late Thomas Starzl who reflected on his stubborn ability to continue attempting liver transplants despite catastrophic failures and personal self-doubt. Those familiar with the observations of Renee Fox and Judith Swazey that the early transplanters had “the courage to fail” — or in Mezrich’s view, “the courage to succeed” — will appreciate the fresh perspective on this theme from an insider’s point of view. Parts four through six explain what transplant medicine is like today as it relates to the recipients, donors, and surgeons (practicing and aspiring). This half of the book, which I focus on below, is invaluable for making a more informed decision to donate in general. As a whole, it is an oasis of expert testimony in the desert of knowledge the public mind has wandered through the last forty years.

Unlike other surgical areas, transplant surgeons develop long-term relationships with their patients. While the operation is the most consequential event in that relationship, the bonds of care are formed long before and after the graft is sewed in. These bonds can lead one to say some shocking things: “I had been hoping to get Jason a perfect liver,” says Mezrich, “maybe from a twenty-two-year-old who’d died in a motorcycle accident or from a gunshot wound to the head.” To get a liver, the patient has to be sick enough to be prioritized, but not so sick as to be disqualified from consideration. Apart from a few exceptions, both doctor and patient must navigate this macabre Goldilocks zone together. Waiting for a “younger” organ to become available threatens the patient’s life; accepting a less healthy one may secure fewer benefits and more burdens. Either way, complications from surgery or an underlying condition may erode function and the surgeon and patient find themselves going through the whole process again.

One such underlying condition is alcoholism. Although recognized as a disease, stigma surrounding it continues to raise questions in the public’s mind about allocating livers to alcoholics. The general rule is to require at least six months of sobriety, but what about patients who won’t survive the waiting period? The stories of “Lisa” and “Herb” are told to help answer the question. Lisa receives a healthy liver but doesn’t survive past five years, dying shortly after telling her family what everyone already knew: she had a drinking problem and was too ashamed to admit it. Herb, despite being headstrong and self-reliant, comes to see he has a problem and seeks long-term help; what does not help is the threat from his surgeon to “take back the liver” if he relapses. The key is for the patient to have insight into their condition and commit to change. Relapse should be treated like any other setback in a chronic illness, not an unforgivable affront to the donation system. The gift of life should not be withheld from alcoholics, but given upon the condition that the recipient moves past denial and seeks help.

Since we are better at treating various liver diseases, more alcohol-related transplants are being performed, which has had a crowding-out effect on those who suffer from rare, chronic conditions. The “model for end stage liver disease” (MELD) score used to allocate livers is based on one’s risk of dying on the waitlist without any regard to debilitation or “quality of life” considerations. Mezrich tells the story of “Nate,” an aspiring surgeon, whose MELD score is relatively low, but whose primary sclerosing cholangitis causes severe itching and multiple hospitalizations. People like Nate have two options: (1) the listing committee can grant a MELD exception by adjudicating his case in a more holistic way, or (2) one of his family members can donate half of their liver to him directly. Nate benefits from the first way, which raises questions about the fairness of the process. Nonetheless, there is a need to incorporate more than just lab scores associated with mortality risk in the allocation system for patients with rare conditions.

The most moving chapter in the book is about “Michaela,” a college-aged white woman from rural Wisconsin who receives a liver from “CL,” a young black man who was tough on the streets, but tender with his mother; he promised his mother that no matter what happens “he will always be with her.” The story illustrates the complexities of surrogate decision-making on behalf of others who haven’t documented their wishes about donation, the recipient’s desire to know more about the donor and his family, the hesitancy of the aggrieved to respond, and the compelling beauty of both parties “adopting” one another as family members. CL’s mother believes he kept his promise to “always be with her” as his liver lives on in Michaela. Michaela, reflecting on how she became so intimately connected with someone so unlike herself, tells people that despite our social differences “we are all the same on the inside.” It’s a powerful message. Yet, absent from this section is how it might relate to the fact that black Americans are less likely to benefit from the allocation system than white Americans. According to the Department of Health and Human Services, “The number of organ transplants performed on blacks in 2020 was 27.7 percent of the number of blacks currently waiting for a transplant. The number of transplants performed on whites was 47.6 percent of the number currently waiting.”^[1] While this difficult issue goes beyond the scope of his project, one will wonder what Mezrich thinks about it and how the discipline should respond.

His stories about the donors evoke complicated feelings about complicated questions. After introducing the particulars of donation-after-circulatory-death (or DCD) protocols he raises the question, “If DCD patients are going to die anyway, why don’t we just take their organs out while they are intubated, under anesthesia?” Instead of giving a philosophical answer, he tells the story of a two-year-old who died tragically from a throat infection. His parents played his bedtime music and read him his favorite bedtime story surrounded by his stuffed animals. After the breathing tube was removed and he breathed his last, he was laid on the operating table, kissed one last time, and the parents walked out; Mezrich then writes, “and we rapidly cut him from stem to stern and removed his beautiful organs.” It’s hard not to be repulsed by this. Nonetheless, this story, and the one told after it about a sixty-year-old donor, indicates that Mezrich and his team are aware of the danger of being perceived as “vultures.” Yet the families with whom they consult don’t see them that way; they want to see life come from their loved one’s death. For the two-year-old, Mezrich says they “had to get the organs out perfectly” because they “owed that to him, his family, and our recipients.” “In this field,” he writes, “we take from death. Death is our starting point.” The line between life and death is morally important, then, because it serves to distinguish the kind of care the patient is owed. Yet Mezrich’s discussion of “brain death” — which was initially rejected by the early transplanters at the 1966 CIBA meeting — is a story about how it was later accepted as “legal death” throughout the world because of its utility for transplant. The reader will wonder if the death criteria used in organ donation really indicate death, or if they are just useful fictions to facilitate donation.

The rest of the book addresses the risks undertaken by live donors, how the parties involved deal with surgical complications, the possibilities of procuring organs from animals, and the responsibilities surgeons face in determining what risks healthy donors are allowed to take: developing the courage to “try to again” after a poor outcome, respecting animal welfare concerns, and managing the conflict between the drive to meet patient need and the drive to innovate new therapies.

Bioethicists tend to write abstractly about the topics Mezrich raises, but rarely do they interact with the first-person testimony of a practitioner in the field. This is lamentable. Perhaps the reason for this involves distrust that arises between parties that, on the part of practitioners, see themselves as dauntless boundary-pushers that go the extra mile for their patients and, on the part of bioethicists, as pesky watchdogs that call for social responsibility. Mezrich’s book goes a long way, however, in showing that the two parties have much in common: concern for the welfare of the patients involved and the production of useful medical knowledge.

Adam Omelianchuk
Baylor College of Medicine
Houston, TX

References

^[1] https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlid=27

In “Life After Privacy: Reclaiming Democracy in a Surveillance Society,” Firmin DeBrabander proposes that the stakes associated with the loss of personal privacy are even higher than is generally acknowledged. Personal privacy is a compelling issue, and his review of it is engaging and accessible. He is successful in demonstrating that powerful forces—corporations, governments, and partisan activists—have many ways of intruding on our private lives and thoughts. DeBrabander’s largest contribution to the ongoing dialogue about privacy, however, is an assertion that the loss of privacy threatens democracy itself. Disturbingly, he may be right—although maybe not for all the reasons he claims.

DeBrabander’s focus is on the use of the internet and how it can be used and abused to shape our thoughts, beliefs, and even our identities. He provides a vast number of examples of how digital communications can be used to surveil and deceive us. And for sure, these attempts to shape our epistemic experiences should worry us. Some threats to privacy, of course, predate the digital age. Privacy often concerns the preservation of one’s accurate (and hopefully, therefore good) reputation, and in service of this goal, even pre-internet, a lot of us were advised not to gossip. Many of us were told that “Great minds discuss ideas; average minds discuss events; small minds discuss people.” This admonition was meant to discourage gossip within communities, thereby respecting others’ privacy. But DeBrabander is prepared to go a step further, and characterizes these intrusions as a threat to our inner lives—our ability to reflect, genuinely and carefully, and form our values, political beliefs, and commitments. This, he says, is a threat to democracy. It’s a bold contention, and worth considering. If DeBrabander is right, the loss of privacy is no longer a threat merely to individuals, but to entire forms of governance. He does not back off from raising the specters of tyranny, fascism, and autocratic rule that could result.

The fragility of personal privacy is an important issue, and “Life After Privacy” is convincing in its review of these existing concerns. I do hope that people, especially privacy professionals, policymakers, activists, and others read it and consider its implications carefully. But because this issue is so important, and generally under-acknowledged, we need to scrutinize DeBrabander’s arguments closely.

First, though, we need to define some terms. Early on in the book, DeBrabander warns that one reason privacy is so hard to protect is that it’s hard to define. This is in fact a problem within the growing field of information privacy, and privacy professionals must often coordinate with others in the fields of security, civil rights, legal compliance, data ethics, and more to determine what constitutes a privacy issue (or at least, a primarily privacy-related issue). “Life After Privacy” relates many examples of concerns dubbed “privacy” concerns that involve compromises of control, autonomy, and trust. For many authors discussing privacy, privacy appears to exist somewhere around the intersection of these topics. A more concrete definition has been proposed by philosopher Michael Lynch—a privacy violation is “A violation of one’s autonomy as it applies to determining what information about one’s self we choose to share.”[1] DeBrabander acknowledges that other definitions are possible. Dan Solove, he notes, approaches the topic differently, and thinks of privacy concerns existing within a “taxonomy of privacy,” a set of privacy-related issues including, surveillance, identity theft, breaches of confidentiality, appropriation, and blackmail.[2] DeBrabander does not fully commit to Lynch’s definition (or, implied definition), instead noting that privacy is contextual, and implying that what constitutes a “privacy” issue may depend on factors unique to each situation. But he does return to Lynch’s construction, and most of his analyses align with it.

I look at DeBrabander’s argument as having three parts (although he is not explicit in structuring it this way). In the first part, DeBrabander contends that privacy incursions are ubiquitous, pernicious, and often hard to detect. This first contention is hard to deny, and he provides the reader with plenty of examples. The most disturbing aspect of many of these instances is that the data subjects not only permit organizations to collect information about themselves, they do so willingly or eagerly. Many innovations, some exciting or apparently beneficial, also pose threats to autonomy and seclusion. For example: department stores may track your purchases, and use this information to offer you deals and inform you of products that may meet your needs; but they may divine from your purchases the most intimate details of your life. Facebook will connect you to dozens, hundreds, or thousands of people, and help you maintain friendships and contacts; but will develop a profile of you based on what you choose to view and what information holds your attention. Methods of evaluating individuals’ purchasing and borrowing power offer alternatives for those without a traditional credit history; but some, like China’s “social credit” scheme, will diminish your score based on your personal associations, encouraging you to sever social ties. Employers may encourage you to use wearable devices to help improve your health, and thereby lower their overhead for group health insurance plans; but in the future, they may abuse this technology and monitor your sleep patterns, or your comings and goings into the office, and make inferences about you as an employee. Driverless cars may in the future deliver you safely to your destination; but a record will now exist of your every move and destination. The list of such possible compromises of privacy is very long, and in many cases these uses would not even be illegal in the United States. DeBrabander notes that, whether legally permissible or not,  many of these actions are “creepy:” “When something is creepy, we mean to say we suspect it is wrong, or there is something potentially damaging or dangerous about it, but we are unsure what it is.”[3] The discussion of such problematic uses of technology are in fact alarming, and at around this point in the book DeBrabander begins referring to those who collect and use this information as “our spies.”[4]

The second part of DeBrabander’s argument states that privacy is integral to democracy. He asserts that “our founding fathers,” for example, were concerned about privacy and its relationship to government.[5] Most of his evidence for this consists of noting that some writers and thinkers, prior to the founding of the United States, contended that solitude is necessary to developing one’s opinions, beliefs, and character. For example, he provides a lengthy review of the work of the Stoics, explaining their views on “emotional resilience and equilibrium” in some detail.[6] “According to [Stoicism’s] advocates, privacy is that space where I can be alone, uncorrupted and untouched by outside influences; and in my isolation, I may have or develop or discover the autonomy to shape my opinions and outlook, my emotional state and personality, and fate,” he says.[7] He finds further support for the connection between privacy and the development of individual values in various Christian writings, noting that some of these require a consciousness achieved through “profound, sincere reflection and prayer, and honest assessment of one’s sins,”[8] activities that must be achieved in private. He finds explicit examples of this connection in sources including Matthew 6: 5-6: “But you, when you pray, go into your room, and when you have shut your door, pray to your Father who is in the secret place….”[9] These ideas, he claims, had direct effects on conceptions of privacy in Europe that ultimately influenced privacy in the United States.

Finally, DeBrabander contends that given that privacy is under assault from so many actors, in so many ways, that individuals (or even associations) may not long be able to maintain the privacy necessary to democracy.

All three of these claims, however, are open to at least some challenges. With respect to his first claim, while privacy is certainly at risk—notably in the United States, which appears to be DeBrabander’s primary concern, although he never explicitly states this—not all of his examples support this contention directly. DeBrabander shifts his frames of reference rather suddenly. For example, while he is concerned with how privacy may have mattered to “the founding fathers” (a term most often associated with the U.S.), many of his examples are drawn from other countries, some of which are not democracies and don’t even pretend to protect democratic rights. Many other examples are threats to our autonomy or well-being, but are aimed at changing our desires or buying habits, rather than our political beliefs or participation. And some technologies he reviews do in fact have potentially frightening alternative uses, but for many of these, malicious uses have not been currently documented, but merely considered, or piloted and abandoned. DeBrabander succeeds in demonstrating that privacy is fragile—few could disagree. But not all of his arguments point to current threats to the autonomous development of individuals’ political ideals in the United States. Some such threats are possible, but perhaps not as imminent as he implies.

In his second contention, DeBrabander seeks support for the idea that privacy is critical to democracy. Here, again, I think many people would agree. It’s hard, for example, to reconcile democracy with a totalitarian surveillance state. But DeBrabander seeks support for this contention largely by noting that certain philosophical movements seem aligned with the idea that solitude and time for reflection is necessary for studying and absorbing the principles of those same movements. Individuals may then pursue those ideals when participating in democratic processes. Solitude is, of course, not the same as privacy (as he admits); and this argument doesn’t quite jibe with Lynch’s formulation of the elements of a privacy violation. I would have appreciated just a little more connecting of the dots here—yes, famously, many of the “founding fathers” were exceptionally well-versed in the classics and philosophy, but do we have any illustrations of the direct intellectual influence of the Stoics or specific Biblical passages? If we deem this evidence insufficient, we are left to our own intuitions as to whether we agree that privacy and solace are, in this particular way, necessary to democracy. The argument is intriguing, but hard to support empirically.

Many readers may have that intuition—they may agree, or at least suspect, that developing one’s individual commitments requires unstructured time and reflection. But as DeBrabander points out, even those who have been trained in critical thought and afforded time and space to do so, may be merely capable of “relational autonomy.” Citing the work of Marilyn Friedman, DeBrabander notes that we “develop the competency for autonomy through social interaction with other persons. These developments take place in a context of values, meanings, and modes of self-reflection that cannot exist except as constituted by social practices.”[10] DeBrabander acknowledges that this concept raises some questions that peck away at his thesis: “Who is to say … if my decisions post-reflection are so independent and self-driven and self-conscious after all? Do they really depart from the tradition I reject, for example?”[11] He never quite answers these questions, and merely acknowledges they undermine the idea that we can reach truly independent political beliefs, that “we are each a self-creation,”[12] and does not resolve this potential objection to his claim.

With respect to the third part of DeBrabander’s argument—that incursions into privacy may be significant enough to damage democracy—well, even if you don’t buy DeBrabander’s other claims, the possible connection between intrusion into autonomy and the political health of democracies is worrisome. Strong evidence exists, for example, that agents outside of the United States sought to affect the 2016 election by sending false and misleading information over social media.[13] However, not all of these efforts meet Lynch’s characterization of violations of privacy.

In his final chapter before his conclusion, DeBrabander attempts to offer some encouraging insights. These, however, do not quite rise to the claim made by the book’s subtitle (“Reclaiming Democracy in a Surveillance Society”). First, he notes that the loss of privacy has an upside: those with hateful, bigoted, insupportable beliefs can be exposed in the clear light of day. “White supremacists strive to fit in or lay low, but we ought to encourage them to stand out, and state their differences—as we all should. Racist views can be addressed better this way.”[14] He acknowledges that this is a “tricky proposition,”[15] but takes issue with attempts to stifle or suppress such views. What exactly the mechanics should be of encouraging bigots to stand out—to fail to exercise their own privacy and expose themselves—is a little unclear. He discourages what he sees as a strong trend on college campuses to provide “safe spaces,” which leave students “increasingly unable and unprepared for life in the public realm.”[16] Such a contention is not new: We’ve heard many times that “sunlight is the best disinfectant” and “the only appropriate response to repugnant speech is more speech.” But of course such safe spaces were and are contained; they have boundaries, within the institutions where they are sponsored. They could be said to protect the very form of privacy—space for solace and reflection—that he has earlier praised as vital. And beyond this criticism, DeBrabander doesn’t offer any more insight into what platforms we should provide white supremacists and other repugnant people, and how much we permit them to assume a place in public discourse and assume political power.

DeBrabander’s views here seem to contradict his earlier warnings about a supposed trend toward more voluntary disclosures. Early in the book he laments the loss of “pre-internet rules of etiquette,” and what he believes are changing mores concerning formerly-private thoughts and experiences. In those earlier passages, he appears to be urging more discretion; in these later sections, he seems to be urging more disclosure of intimate thoughts. For example, he reacts with horror to an acquaintance committing an act he deems to be oversharing: “[s]he broaches a new frontier,” he sniffs, “and posts close-up pictures of her breastfeeding, which leaves little to the imagination.”[17] DeBrabander acknowledges that many such social media posts may seek to de-mystify or normalize previously shunned behavior or attributes, but declines to explore such ideas further. I don’t know how he would reconcile his distaste expressed here with his encouragements to his readers to stand out and state our differences, “as we all should.” Perhaps he’s urging his readers to exercise discretion, while allowing their intellectual opponents to render themselves vulnerable?

He further suggests that political activists avoid specific pitfalls of online coordination. Dependence on the internet, with its concomitant risks to privacy and tendency for oversharing, may not be helpful to progressive movements. He notes that many social movements that originated or grew online—Egyptian resistance to Hosni Mubarak, the Occupy Wall Street movement, a 2013 movement centered in Istanbul—grew too quickly, and organized too “horizontally” to be effective.[18] These movements, he claims, lacked clear goals, and had no recognized leadership with whom those in power could negotiate. He suggests that truly effective organizing—such as that of the American civil rights movement—requires face-to-face meeting and negotiation, and the long-term development of social ties and shared missions. He claims that the three examples he provides largely or completely failed, for these reasons. Even Black Lives Matter, he claims, suffered a harsh setback with the election of Donald Trump, many of whose supporters were vocal opponents. But while many of these movements experienced setbacks, they also made some advances, and most notably among these advances were the awareness and support they generated via use of online organizing. His attempts to contrast these efforts with the American civil rights movement are also blunted somewhat by the fact that, while that movement succeeded in meeting many of its defined goals, its work is far from over.

What would he make of other social movements that succeeded in bringing formerly-suppressed or hidden injustices to light? Surely, many of the acts that initiated these efforts were not mere oversharing or futile attempts to leverage the internet. The #metoo movement, the exposure of high-profile serial harassers and sexual assaulters, the exposure of institutions that have harbored or even fostered patterns of abuse—all of these have been exposed and ameliorated largely because enough people were able to use digital media to find each other, document their shared experiences, and gather evidence. Certain kinds of abuse thrive on silence—call it enforced or imposed privacy­—and changing methods of communication have exposed many people who have abused their power.

Ultimately, these recommendations fall short of providing the weapons to combat threats to democracy. I’m not sure what else I was expecting: Technical tools to avoid tracking one’s activities? Legislation requiring greater transparency? Broader-reaching legislation, addressing multiple industries, as has been done in the European Union? Better efforts at identifying organizations that seek to exploit our data? Offers of privacy protections as valued features of online retailers? Many of these solutions have been proposed and may help reclaim at least some of the territory we’ve lost. DeBrabander addresses some of them, but fears that even these steps are insufficient in light of the magnitude and perniciousness of the problem.

“Life After Privacy” does not meet all of its goals. It does, however, raise new concerns that align with existing, well-documented ones, and these are worth exploring further. “Life After Privacy” provides a thorough and clear introduction to a complex and important subject, and warns us, and perhaps helps us steel ourselves, against surveillance and attempts at manipulation.

Dan Steinberg
Washington, DC

References

[1] DeBrabander, Firmin, Life After Privacy: Reclaiming Democracy in a Surveillance Society (New York: Cambridge University Press, 2020), 22 (citing Michael Lynch, The Internet of Us (New York: W.W. Norton and Co., 2016, at 103).
[2] DeBrabander, 34.
[3] DeBrabander, 20.
[4] DeBrabander, 37.
[5] DeBrabander, 79.
[6] DeBrabander, 79.
[7] DeBrabander, 82.
[8] DeBrabander, 83.
[9] DeBrabander, 82.
[10] DeBrabander, 117.
[11] DeBrabander, 131-2.
[12] DeBrabander, 132.
[13] DeBrabander, 121
[14] DeBrabander, 150.
[15] DeBrabander, 150
[16] DeBrabander, 149.
[17] DeBrabander, 14.
[18] DeBrabander, 153.

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What kind of world do we want to live in? It’s rare that we ask this question of ourselves, and even rarer that we get to do so with others. In Altered Inheritance: CRISPR and the Ethics of Human Genome Editing, Françoise Baylis encourages us to keep this question in the forefront of our minds as we think about whether, when, or how to edit the human genome. She is neither an “enthusiastic proponent nor a staunch opponent” (65) of heritable human genome editing. She is, however, very clear that the ethics of human genome editing is not the domain of scientists, ethicists, or elites. Her thesis is that all of us must think together about what our collective future should look like, and then consider whether and how human genome editing fits into that future. While she persuasively defends this thesis, however, Baylis is short on the details of how we achieve it, and at some points, her close analysis of discrete events could distract readers from the expansive, collective thinking she prescribes.

The book’s main argument defends broad societal consensus about human genome editing, that is, creating “a process that involves seeding global dialogue, engaging in a respectful exchange of divergent views and values, building trust, and exploiting collective intelligence on how best to use science and technology to create a better world” (8). Baylis argues that this process must involve people beyond science, medicine, government, private corporations, and other elite institutions. Baylis describes what’s at stake in both somatic and heritable human genome editing—both for individuals and society. Much of what she reviews in the chapters 1-5 will be familiar territory for bioethicists. These chapters make the case that the complexity of the ethical issues and high stakes merit broad societal consensus on human genome editing. The argument gains steam in the second half, as Baylis details milestones in the science, oversight, and governance of heritable human genome editing. Special attention is paid to the 2015 and 2018 International Summits on Human Gene Editing—and their failing to be inclusive or even to abide by their own recommendations. The 2015 International Summit Statement, penned by the Organizing Committee, called for broad societal consensus ahead of continued research on heritable human genome editing. The 2018 Summit Statement however, affirmed the permissibility of research on heritable human genome editing as it outlined a translational pathway for its development and use. Almost no effort to achieve broad societal consensus occurred in the meantime. Roughly the second half of the book analyzes what happened during those intervening years, from recruiting women to donate eggs to research that would involve editing embryos to debates over the use of the word ‘moratorium’ among American scientific leaders.

Baylis is no stranger to this topic. She’s been writing on it for decades. I was surprised to learn that Altered Inheritance is her first single-authored manuscript. (Baylis edited or co-authored some 18 other books. Her CV extends fifty-some pages.) Some of the book’s ideas and arguments have been developed elsewhere yet Baylis brings them together in a novel and engaging way.

The biggest strength of this book is Baylis herself. Given her prominence in the field and dedication to practicing “Impact Ethics,” Baylis has not only had access to but also actively participated in institutional, national, and international discussions of the ethics of heritable human genome editing at the highest levels, including among International Summit organizers. She’s a trustworthy navigator of what has happened in the science, ethics, and governance space since CRISPR was discovered. Her argument for broad societal consensus is bolstered by the close account she provides of scientific leaders and other elite academics and institutions making pronouncements about the future of human genome editing without meaningful input from non-scientists, much less the marginalized voices among them.

To this point, in Chapter 7, Baylis accuses science of “disparaging” ethics (145). I want to offer a different interpretation: Science has “chosen” the ethic to guide the future of human genome editing. Far from disparaging the work of philosophers and bioethicists, certain ethicists’ work has been too readily embraced. Embracing the work of people like John Harris, Julian Savulescu, and others who defend heritable human genome editing, some scientists’ failing is not so much their ignorance or disparagement of ethics, but overconfidence. They seem to believe that their chosen way of thinking about and seeing the world and humans’ place in it is the only one that ought to guide scientific inquiry and technological development. This interpretation of the scientists and Committee members at the center of Baylis’s story implies that debates over human germline editing are political in nature, not only ethical. While Baylis takes scientists’ “disparagement” of ethics as illustrating a need for sound ethical analysis, this could also be analyzed through a political lens. Who has—and ought to have—the power to direct scientific inquiry and technological progress? Who has—and ought to have—the power to set values that should guide us in that endeavor? Baylis’s emphasis on public empowerment, over and above public engagement, acknowledges the political nature of the debate over human germline editing. Questions about what kind of world we want to live in are indeed ethical questions—ones we ask both of ourselves and with each other. Questions about how “we” should negotiate our different answers and nonetheless flourish and live together peacefully move us into the political realm.

To her credit, Baylis enters that realm. The last chapter of Altered Inheritance presents Baylis’s vision for inclusive democratic governance of heritable human genome editing: “global citizens from all walks of life are afforded an opportunity to meaningfully contribute to discussion, debate, and decision-making” (193). She describes three democratic forums that could be used to engage and hopefully empower publics: democratic deliberation, collective discernment, and decision-making by consensus. She also notes efforts to create inclusive international guidance and governance mechanisms. Baylis does not describe how the democratic forums she describes might feed into the larger international projects.

This chapter will leave many unsatisfied. For example, those who study and practice democratic deliberation will note that her framing of the goal of deliberation is too narrow. Democratic deliberation need not reach an actionable decision. Its value to policymakers or others is sometimes in exploring nuanced views of participants and understanding their perspectives on a particular topic, even when there is no expectation of a decision or a resolution. Additionally, some of the problems that Baylis notes pertaining to the role of experts in democratic deliberations can be allayed through the design of the forum. Facilitators need not be scientific experts. These are small things compared to the real let-down: Baylis does not move from describing these forums to outlining how and where they might occur. Democratic forums like those she describes can produce extremely valuable information, but who is paying attention? Who should fund these forums? Will the results feed into policymaking in a way that empowers publics, or will they be ignored? What new institutional or political structures at the local, national, and international levels can make this vision a reality? These questions need answers if we are to achieve Baylis’s vision.

The book’s stated aim is to “improve the ethics literacy and science literacy of those who are keen to reflect on the ethics and governance of deliberately altering the genomes of our descendants” (8). Baylis writes, “the intended audience is the human family—‘all of us’” (8)—presumably those who would participate in the kinds of democratic forums and discussions Baylis prescribes. A good chunk of the book, however, is concerned with the ways in which those with control over the future of heritable human germline editing, i.e. members of the International Summits’ Organizing Committees, have failed to check their power over the last six years or so. They’ve shifted terms of the debate, made empty promises to engage publics, and arguably abdicated responsibility when their recommendations and actions were misinterpreted by He Jiankui, the Chinese scientist who used CRISPR to produce gene-edited babies in 2018. This accounting is important, especially for those thinking about and working on the governance of heritable human genome editing. I found it fascinating, at some points reading like an “insider’s perspective” on events that I had witnessed from the outside. However, Baylis’s account of this history does not obviously improve the ethics literacy of those who are keen to join the conversation about our collective future or whether we should edit the human germline. I found the detailed account of how specific individuals on the Organizing Committees understand the word “moratorium” to be particularly distracting from this overarching goal. Ditto for the extensive analysis of informed consent documents used in Shoukhrat Mitalipov’s study at Oregon Health and Science University’s study that involved editing human embryos. Baylis found serious flaws and ethical failings in the informed consent documents and process to procure eggs from female donors in that study.

To be clear, calling for moratoria (or not) and the adequacy of informed consent processes are extremely important topics of analysis and discussion. I found them insightful, and these parts of Altered Inheritance should be of interest to people who are serious about the oversight and governance of this research. But that is not “all of us” in the human family. It’s a very particular subset. So, while I think the book succeeds at shedding light on the tensions, intricacies, and power dynamics of the oversight and governance of human genome editing to date, I am less convinced that Baylis met the goal she set out for herself: Namely, to write a book of broad interest to those who want to understand how heritable human genome editing fits, or doesn’t, in our collective future. I recommend this book to colleagues who want to think seriously about the governance of heritable human gene editing, to get a sense of how many layers of oversight and governance there are (committee, institutional, national, international) and how things can go better and worse at each.

As I was finishing up this review, the World Health Organization (WHO) released its Recommendations on Human Genome Editing, along with a Framework for Governance of the technology. Baylis was a member of the Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing that led the process of writing these Reports. Her insights and impact can be found throughout the comprehensive report, such as the inclusion of empowerment of publics alongside public education and engagement as an important goal. Furthermore, the Expert Advisory Committee consulted with people from around the globe representing a variety of different sectors, organizations, and perspectives as they prepared their Report. It’s not quite a robustly democratic process with direct input from ordinary people, but this effort nonetheless made good on the commitment to inclusivity and listening to marginalized voices. It’s progress, and I, for one, am grateful to Baylis for steering all of us in this direction.

Carolyn P. Neuhaus
The Hastings Center
Garrison, NY

Acknowledgement: Carolyn receives funding from the National Science Foundation to study broad public deliberation about the use of genome editing to modify organisms in the wild (Award Number: 182793).

THE STRAIGHTS ARE NOT OKAY.

The tragedy of heterosexuality is this: modern straightness dooms once-hopeful, loving couples to share dull, frustrating, and lonely lives together. After all, men are from Mars, women are from Venus, and what’s a heterosexual to do about it? Against this dismal state of affairs, Jane Ward’s The Tragedy of Heterosexuality offers a scholarly, empathetic intervention from the perspective of queer culture. Ward’s book reveals that the titular tragedy is rooted in the misogynistic ideology permeating straight culture, according to which women are at once objects of desire and derision. In a culture animated by this antinomy, women and men are very different creatures and, by the same token, they are bound to struggle in communicating their needs to one another, to say nothing of living fulfilling lives together. Uncrossing these lovers’ stars, Ward contends, requires adopting a form of heterosexuality—deep heterosexuality—that excises misogyny from straight culture, thereby making room for a version of heterosexuality in which men not only lust for women, but actually like them.

But, how did this situation come to be? Relying on the work of feminist historian Afsaneh Najmabadi among others, Chapter 2 draws readers’ attention to the historical tension that gives rise to this tragedy. Prior to the social evolution of modern companionate heterosexuality, marriage was an explicitly patriarchal, property-centric institution. Across many cultures, wives were merely a tool for property transfer and procreation. In patriarchal contexts like this, Ward contends, the possibility of love—the heart of today’s understanding of straightness—becomes suspicious and emasculating. A man who is devoted to a woman is subordinated to her. Thus, wherever the transition away from property-based marriage begins, it threatens the long-standing patriarchal social order (Ward 2020, p. 38). Such threats do not go unanswered.

Ward focuses on the development of this tension in the United States, with particular attention to the influence of the eugenics movement and the relationship between heteronormativity and American white supremacy (Ward 2020, p. 39). Eugenicists of the early 1900s held that the preservation of white society required happy white homes, because happiness would lead to fecundity. Thus, the happy heterosexual home became an ideal of American life. Ward’s archival analysis reveals that this ideal was a demanding one: men and women of the time routinely loathed both the marriages in which they’d found themselves and the partners to whom they were bound. They regarded one another’s bodies as unfamiliar and disgusting (Ward 2020, p. 39), and women, routinely raped on their wedding nights and knowing little, if anything, of what they were about to experience, came to know their husbands as purveyors of an unspeakable, ungratifying, and ugly act (Ward 2020, p. 41). This, of course, is poor soil for seeds of love and companionship.

In observation of this fallow state, sexologists at the Eugenics Publishing Company pioneered the techniques of the heterosexual-repair industry. This industry is central to Ward’s project: While it aims to diagnose and treat the problems that plague straight couples trying to forge lives together, Ward observes that the industry takes a decidedly heteronormative tack. In the early days, titles like the 1919 Sane Sex Life and Sane Sex Living normalized the disgust men and women felt for one another and urged them assuage it through professionally guided education and extensive rituals of “hygiene”, such as shaving, perfuming, douching, and so on (Ward 2020, p. 44). Emphasizing the otherworldliness and incomprehensibility of the opposite sex, even the earliest products of the heterosexual-repair industry advised men and women to lean into the analysis that misogyny provided and choose the solutions it placed in easy reach.

By the 1950s, the industry shifted away from addressing the shortcomings of couples considered together, instead focusing on the many failings of the women in those couples. Women were advised to groom not only their bodies, but also their personalities. As explained by Dr. Edward Podolsky’s “10 Commandments for Wives”, listed in Sex Today in Wedded Life: A Doctor’s Confidential Advice, the important and world-weary men in women’s lives needed wives who could overcome the desire for petty household chatter, ensure a warm, happy, clean home, and maintain an enticing appearance (Ward 2020, p. 49–50). As time went on, Ward illustrates, women’s emotional and physical labor remained the panacea of the heterosexual-repair industry, even as it adopted a more feminist tone in the 80s and 90s. Despite identifying misogyny and male entitlement problems, still the industry was unequivocal: Where a marriage is lacking, a woman is slacking.

But, capitalism loves a vacuum. Chapter 3 takes the reader on an empathetic ethnographic tour of the relatively new, masculine side of the heterosexual-repair industry: the seduction industry. Here, more than anywhere else, Ward’s commitment to empathy is challenging. As Ward traces the seduction industry’s lineage in pick-up artist culture and shares her experience attending in-person seduction industry events, it is difficult to peel one’s attention away from the fact that this lineage is the same one that inspired Elliot Rodger’s explicitly misogynistic 2014 killing spree in Isla Vista, California (Ward 2020, p. 85–6). Nevertheless, Ward manages to conjure a scintilla of empathy for these men. In her accounting, the seduction industry has come a long way from its objectifying, misogynistic beginnings. Today’s “seduction coaches” still tell the awkward, self-disparaging men who seek their advice that their courting woes are not their fault. Rather, these failures are rooted in the fact that it is now women, not men, who control seduction and dating. The evolution of the industry comes in its response to this situation: Success, coaches argue, requires that these men see the world through women’s eyes. To avoid seeming creepy, they must understand that women rebuff their advances not because they see them, in particular, as bad men or because they hate men, but rather because these women must contend with a crushing tidal wave of dubious, sometimes-frightening advances. They must understand that “bitch shields” and protective “AFOGs” (the “alpha females of the group”) are necessary strategies for surviving the onslaught (Ward 2020, p. 90). Nevertheless, these shifts in perspective are not aimed at the liberation of women or genuine empathy for their experiences, despite adopting certain feminist insights and language. Rather, they aim, as one of Ward’s interviewees explained, at getting “more high-quality pussy” (Ward 2020, p. 81). The spark of empathy is fleeting.

Together, chapters two and three illustrate a key insight of Ward’s analysis. While the tactics of the heterosexual-repair industry are carefully tuned to its distinct audiences, it employs an unwavering strategy: teach constituents to understand the vast, gender-based differences between them and their mates, then teach them to manipulate those differences to get what they want. Straight relationships, on the industry model, are relationships of adversarial opposites. Repairing them requires clever new tactics—not an interrogation of the gender roles that define the battlefield. This investigation of the heterosexual-repair industry shows that it embodies Ward’s thesis: despite the ongoing shift away from property-based marriage, straight culture remains tragically misshapen by misogynistic, patriarchal ideology. In her analysis of the industry, we see straight culture not only reify, but also reinforce and normalize these assumptions: from the concept of natural difference (Men are from Mars, Women are from Venus), to the primacy of homosocial status (The Game), to domestic asymmetries (Act like a Lady, Think Like a Man).

Ward attributes her clear vision of this misogynistic throughline to her queerness. Whereas heterosexuality and its many scripts are defaults into which most are socialized, queer lives are discovered and carved out in defiance of this pressure. Despite the fact that this, along with other difficulties of queer life, is widely regarded as a tragedy of its own, Ward’s perspective is joyous. She revels in the freedom and self-ownership of queer culture and queer relationships, and it is against this backdrop that the contrast with straight culture is so visible. Ward is also very much aware of the privilege that the other particularities of her position—not only as an able-bodied white woman, but also as a Professor of Gender and Sexuality Studies at the University of California, Riverside—provide her. For this reason, Ward relies heavily on the perspectives and analyses of queer women of color in her work, drawing on Patricia Hill Collins, bell hooks, Audre Lorde, and others.

The voices of BIPOC queers also come alive in Chapter 4, which provides a litany of queer diagnoses of the ills of straight life: boredom, mutual dislike, lack of imagination, and so on. Largely drawn from anonymous surveys of Ward’s own social circle, these commentaries may not provide a broad-based sociological study, but they are nevertheless passionate, funny, and poignant. For example, observing straight men and how straight women treat their partners, a queer Latina commentator explains, “My guard is always fully up when I meet a new straight man. He might hurt anyone, including himself at any moment to prove how manly he is […] Also the way straight women coddle and excuse away the behavior of their partners as if they are children. They are enabling them to do dumb shit,” (Ward 2020, p.133). Turning to relationships themselves, another of Ward’s commentators writes, “Let’s talk about the sitcoms straight folks keep making for each other. Do straight couples even know they should actually like each other? Because I don’t think they do,” (Ward 2020, p. 127).

This contrast between queer and straight relationships brings out another of the book’s many insights: it isn’t that queer relationships are free from strife, but rather that queer culture assumes that the solutions to those struggles are to be found in the partners themselves—not in prefabricated gender roles they occupy. Through Ward’s telling, one gets the feeling that straight culture asks couples to make a poor bargain: you may gain the security and legibility of well-trodden paths, but at the cost of your freedom to shape your life according to your own, genuine needs and desires.

In her final chapter, Ward sets out to define and endorse deep heterosexuality as an alternative to the morass of unsuccessful remedies canvassed throughout the book. For this, Ward returns to fellow queer thinkers—in particular, the lesbian feminists of the 1970s, who took the liberation of women as an object of not only their politics, but also their love. In recent years, feminists have grown rightfully wary of the lesbian separatists and their contemporaries, taking note of the ways that essentialism and universalism led to an exclusionary, transphobic perspective inconsistent with today’s feminism. Nevertheless, as Ward rightly notes, we are often too quick to abandon those who came before us. Revisiting this movement, Ward finds the resolution of a puzzle that both they and straight men must grapple with: How does one square the carnality and felt objectification of lust with the goal of seeing women as fully human partners? Or, as Ward puts it, how does one learn to “fuck women feministly” (Ward 2020, p. 159)?

For the lesbian feminists in Ward’s sights, such as the Radicalesbians, these were not separate things. Women loving women is, in itself, a liberatory act. Seeing another woman’s body as desirable, as a site of pleasure, is a mirror in which one’s own body becomes the same. This sexual liberation can only be understood, in Ward’s analysis, as one facet of the broader liberatory project of being woman-identified. To be woman-identified is to seek women’s liberation in all the facets of their lives. To be woman-identified is to “crave hearing women’s voices, thirst for women’s leadership, ache to know women’s full humanity, and thrill at women’s freedom,” (Ward 2020, p. 32). It is an orientation toward the collective; to women as much as it is to any particular woman. But, as Ward points out, men who express something like this woman-identifiedness in today’s society, who show too much interest in women’s art or art about women’s emotional and interpersonal lives ”risk being perceived as a bit ‘gay’,” (Ward 2020, p.157).

While her queer forerunners provide inspiration, Ward stops short of their separatism and recommendations of “queering”. Instead, the concept of woman-identifiedness is employed as a tool by which to honor the ostensibly guiding impulse of men’s straight identity: love for women. This, I think, is worthwhile. While the exhortation to abandon straight life to one degree or another is exhilarating and liberatory for many queers, and therefore may appear universally liberatory, we cannot assume that this is true for people who genuinely and deeply identify as straight. Some people really are, and really like to be, straight. Thus, in Ward’s proposal for deep heterosexuality, we see an approach interested in the “actualization, rather than undoing” of straightness (Ward 2020, p. 157).

As the framing in terms of Radicalesbian feminist role models might suggest, Ward addresses this final chapter to men. She urges men to reorient their sexuality—to become not just women-oriented, but women-identified. She urges men to yearn for women’s liberation in the same moment as they lust for them, drawing exemplars from the vivid memoirs of Audre Lorde, Dorothy Allison, Jeanne Cordova and others. She urges men to set aside the conquest of women’s bodies in favor of centering their pleasure. In illustration of this point, Ward considers stone butch sexuality. Stone butches are masculine women who eschew penetration by their partners and often refuse sexual touch. But, these preferences do not render them sexually inert. Rather, stone butches’ erotic satisfaction often lies in the pleasure they provide to their partners—in the giving, rather than the receiving (Ward 2020, p. 169). Male orgasm, in other words, need not be the focus of masculine eroticism.

As moving as this example is, however, I wonder whether the promise of men’s woman-identification can be a genuine parallel. Centering women’s pleasure is a good thing, and Ward is certainly correct that many heterosexual relationships would be vastly improved by this alone. But, if we take this superficial content as the lesson of the stone butch example, we miss its rich texture. We miss the transgression-in-authenticity of butch identity. We miss the vulnerability of opening one’s queerness to another person, especially as it was during the era from which Ward draws this chapter’s inspiration. We miss the illegibility of stone sexuality from a straight perspective. If decades of feminist standpoint theory have taught us anything, it is that these contextual trappings are essential—the masculinity acquired when we pass this experience through a heterosexual sieve is simply not the same.

Perhaps this is better understood through the perspective of the revelation. The revelation of queer sex, especially for those of us socialized as women, is seeing that things you learned to loathe—the things about which you were told that people who love women find them disgusting—are actually sexy. It is the visceral experience of the falsehood of those lies. By contrast, Ward’s analysis and prescription revolves around “sameness” and
“difference”, and teaching men to find sameness even with a female partner. But these philosophical abstractions are not the stuff of visceral revelation. This is not to suggest there is nothing to this idea for men. Men, too, can shed the lens of heteronormative expectation and let scarred, puckered, unshaven, and unplucked bodies delight them. They can (and should!), as Ward suggests, see this loving of women’s bodies as part and parcel of feminist liberation. But, this is not the same. This perspective does not free women from the further heteronormative, patriarchal expectation that men’s appreciation of their bodies is a fundamental source of value—it is merely a less onerous instantiation of the same.

This raises a final question: What does deep heterosexuality mean for women? Ward’s proposal is asymmetrical—it provides recommendations to men, but is largely silent about women. There are plausible reasons for this. Perhaps, insofar as Ward’s proposal is a corrective prescription, women do not need such correction; perhaps they are already appropriately oriented toward men. From a more structural perspective, it is men who hold power in our still-patriarchal social context, and so perhaps the onus lies on men to change it for the better.

Even so, straight women are in a strange position. Just as straight men do not lust for women in the way that lesbians do, straight women do not lust for men in the same way that gay men do (a fact illustrated in Ward’s recounting of her first experience in a gay men’s sex shop, where she “encountered a barrel full of lightly stained and dingy-looking ‘used jock straps’ for sale,” (Ward 2020, p. 165)). But, they are also inextricably bound up with men. Moreover, just as men dislike women, women dislike men, at least according to books like How to Date Men When you Hate Men. Given these situational parallels, one might expect deep heterosexuality to have a parallel message for women. And yet, the application is awkward: Should women become more man-identified? Should they “direct their energies” toward men? Should they yearn for men’s voices and leadership and invest themselves in men’s projects? Obviously, these are unappealing recommendations—they reproduce existing social imbalances and many are already true. So, if deep heterosexuality means anything for women, it is likely very different from what it means for men. I hope it means something for women, however, lest they be left waiting for men to “direct their energies toward women”.

While these questions about deep heterosexuality are a challenge, they are made to feel vivid and urgent by the insightful, empathetic, and entertaining chapters that come before. The Tragedy of Heterosexuality offers a provocative, thoughtful history of the awkward adolescence of straight identity, and provides a compelling case for the need to nurture its maturation in the hopes of turning heterosexuality away from tragedy toward the kind of liberation and joy at the heart of queerness.

Catharine Saint-Croix
University of Minnesota
Twin Cities

References

Gray, John. 1992. Men are from Mars, Women are from Venus. New York: HarperCollins.

Harvey, Steve. 2009. Act Like a Lady, Think Like a Man. New York: HarperLuxe.

Long, Howard. 1919. Sane Sex Life and Sane Sex Living. New York: Eugenics Publishing.

Podolsky, Edward. 1947. Sex Today in Wedded Life: A Doctor’s Confidential Advice. New York: Simon.

Roberson, Blythe. 2018. How to Date Men When You Hate Men. New York: Flatiron Books.

Strauss, Neil. 2005. The Game. New York: HarperCollins.

Ward, Jane. 2020. The Tragedy of Heterosexuality. Sexual Cultures. New York: New York University Press.

Animals as Legal Beings is a new and important monograph-length treatment on the inadequacies of both a property and a personhood approach to the legal status of nonhuman animals. In line with decades of literature arguing for the abolishment of the property status of animals, Professor Maneesha Deckha, Professor and Lansdowne Chair in Law at the University of Victoria, British Columbia, Canada, adds a novel twist: personhood, the typically preferred alternative to a property status for nonhuman animals, is not a good option. Why? Deckha argues that personhood is too anthropocentric and too embedded in problematic Western liberal humanist traditions to work for nonhuman animals. Drawing on a truly impressive wealth of scholarship in feminist and post-colonial studies, as well as animal care ethics, Deckha posits a new legal category better able to protect animals from exploitation: beingness.

The first chapter of the book sets out the “legal welfarist” logic animating federal anti-cruelty law in Canada. For those familiar with the work of Gary Francione, the argument here will be familiar, namely, that welfarist approaches to improving the situation of nonhuman animals will inevitably be inadequate because nonhuman animals will never win when their interests are balanced against the interests humans have in their exploitation (Francione 1995). Like many anti-cruelty statutes in the United States, the Canadian Criminal Code prohibits causing “unnecessary” pain, suffering or injury to an animal. Like Francione, Deckha argues that the Criminal Code provisions have been interpreted in a narrow way and applied to “socially deviant acts and not what mainstream society considers socially acceptable animal (ab)use” (51). Deckha provides an excellent history of the 1998–2000 (failed) attempt to move animals out of the property section of the Criminal Code (see pp. 56–60), along with the litany of other failed attempts until an amendment that more-or-less left the provisions as they were but increased the fines and penalties available passed successfully in 2008 (60–67). It covers the 2016 attempt by Liberal MP Nathaniel Erskine-Smith, whose Private Member Bill failed on its second reading and (some) parts of that Bill, which were taken up in separate successful laws such as a ban on the import of shark fins. This discussion also includes the widely celebrated ban on captive cetaceans, as well as a more obscure loophole relating to bestiality created by an off-beat 2016 Supreme Court of Canada decision (67–71). Lesli Bisgould’s Animals and the Law was published in 2011, before a number of these developments, and so Deckha’s chapter provides a helpful update (Bisgould 2011). It would be perfect for use in a Canadian animal law class, especially one where the instructor would like to familiarize students with the Francione perspective. Deckha adds to it the point that in addition to a problematic property framing, many animal cruelty laws also have a colonizing function insofar as they have often been adopted “to cultivate ‘civilized’ and virtuous character among so-called lower classes and racialized groups” (44). The well-supported conclusion here is that “animal suffering [is usually] actionable only in an extremely narrow set of circumstances”: where “majoritarian sensibilities” support it (75).

The second chapter sets out what is wrong with personhood, arguing against those, like Steven Wise and the Nonhuman Rights Project, who would mobilize the concept to better protect nonhuman animals. Given the choice between property and personhood, personhood is the better choice, Deckha writes; however, it cannot be used because it promotes “the problematic liberal humanist affinities” (87) that have not worked well for vulnerable classes of humans and are unlikely to work for the even more vulnerable classes of nonhumans. The issue is that “personhood was reserved for an elite sector of humanity: white, able-bodied, cisgender heterosexual men of property” (88). Even if some nonhuman animals can make it in, by proving that they are “human-enough” (88), e.g. chimpanzees, elephants, or cetaceans, this route “inevitably highlights the differences and putative inferiority of the excluded animals … as well as the included animals[’] .. residual embodied non-humanness” (89). In other words, they are included but not on their own terms. This strategy intensifies existing hierarchies (93). In Cary Wolf’s terms, the approach might work for the “humanized animals” but not those who are at the bottom, the “animalized animals” (93). Deckha writes: “And it is the latter category into which most animals (consider farmed animals and trawled fish) are placed” (93). She continues, “[e]fforts to personify some animals will thus necessarily accent the thingness of other beings … pushing them deeper into the realm of property/thing” (94). This is all very persuasive and thought-provoking and might be helpfully used in an animal law course after reading Wise’s work or watching the documentary Unlocking the Cage (2013) and familiarizing students with the personhood approach.

The third step in Deckha’s argument is the turn towards “being” as the post-anthropocentric legal ontology that would follow, first, the abolition of a property status, and, second, a turn away from personhood. Here is where things get a bit controversial. The promise in the book is that the new subjectivity, “being,” will be more animal-centered or animal-friendly (8, 9), “better respect animals” (123), and will not “bear the imprint of either liberal humanism or anthropocentrism” (9). However, even getting out of the gate, many people will hear in “being” not a distancing from the Western liberal humanist philosophical tradition but a pretty direct connection to it given the centrality of the term “being” in Martin Heidegger’s famous (and notoriously challenging) work Being and Time. This is an exceedingly human exceptionalist text, given the lofty attributes of Dasein such as an apprehension of self that includes things like self-reflexivity regarding death and the pondering of one’s own existence (Wheeler 2011). This would, one would think, make it an extremely un-animal-friendly category, since even if other animals are gifted/afflicted with this same kind of consciousness, we have precious few ways to know about it. Hence, for those who spent time as I did as an undergraduate being tortured by this text, Deckha has an up-hill battle it terms of changing the connotation of the term. And so she launches in, as she puts it, “with apologies to Martin Heidegger” (121). It quickly becomes evident that Deckha means something very different than Heidegger or any of the other dead white male philosophers one would encounter in traditional mainstream philosophical study. Rather than the disembodied, independently autonomous and rational subject of the standard Western philosophical texts like Being and Time, Deckha’s “being” is embodied, relational, and vulnerable (see chart positioning these opposites, 122). She writes about each of these qualities in turn, drawing on a the work of a wonderful array of feminist thinkers, for example, Jennifer Nedelsky on relationality (127–30). Deckha also engages with Lori Gruen’s theory of “entangled empathy” (100–101). I found the discussion of vulnerability, specifically comparing the more liberal approaches of Martha Fineman and Ani Satz, as compared against Judith Butler, particularly rich and informative (see 130–41). Given her reconceptualization of the term, filling it with content that one would not necessarily expect to see, I rather thought Deckha should make the same move as Heidegger did in Being and Time and capitalize her sense of being. This would demarcate it from other ways in which the word is used, specifically in laws relating to nonhuman animals.

The example I have in mind here, one that Deckha surprisingly does not discuss, is the 2015 revision to the Civil Code of Quebec, which adopted the following provision: “[a]nimals are not things. They are sentient beings and have biological needs” (art. 898.1, https://elois.caij.qc.ca/CCQ-1991/ article898.1). It was inspired by France’s recognition of nonhuman animals as “living beings endowed with sensibility” adopted the same year (Boyd 2017, 29). At first blush, the Quebec law would seem to be exactly the kind of change Deckha is recommending, namely, abolishing the “thing” status for nonhuman animals and endowing them with a “being” designation and so would not be “a complete novelty in Canadian law” (123). However, the Quebec provision is located in the book of the Civil Code on property (biens), which implicitly signals that even though nonhuman animals are recognized as sentient and “not things,” they are still property. In case that was too subtle, the provision also explicitly states that the recognition of sentience and biological needs does not change any other laws “concerning property [that] nonetheless apply to animals.” The Quebec example is important I think not just because Deckha is centrally focused on Canada but also because it shows that it is not the use of the term itself that will do all the work here. As Deckha herself says, “[a] change in legal subjectivity would not magically erase the culturally precarious status most animals bear” (173). Deckha’s concept of Beingness (and here is where the capital would be used to good effect) would signal this; small-b being in Quebec and France is used in a way that does nothing to interfere with the instrumental use and commodification of animals and animal products. The same is true of other civilian jurisdictions, which have adopted provisions in their civil codes setting out that nonhuman animals are “not things” (Austria and Germany) or “not objects” (Switzerland), and they use a similar proviso or disclaimer regarding any other laws relating to property (see Eisen and Stilt 2017, paras. 18–25, Germany; 26–35 Switzerland; 42–45 Austria). Deckha is clear that “beingness is meant to replace property, not coexist with it” (155).

Is being or Being less anthropocentric? Again, I think it depends a great deal on how you hear it, specifically, do you hear an implicit “human”? In that respect, “being” is actually quite similar to “person” insofar as one might think first and foremost “human being” (in which case most nonhuman animals are never going to make it) or one may immediately think “empty vessel in which any number of rights may or may not be poured,” i.e. the neutral entity-like legal person or “cluster” concept (Nafine 2009, Kurki 2020). You would think that judges will hear primarily the second vessel meaning, but they will not if they are being presented with evidence about the complex social and emotional lives of specific nonhuman animals and, generally, to emphasize how much like humans they are that they deserve a right like habeas corpus, which protects a person from unlawful detainment, the strategy of the Nonhuman Rights Project litigation. It is difficult, and a bit confusing, to ask these judges to think about person in the human sense and person in the neutral vessel sense at the same time. If they yes to the latter, they will easily be taken as having said yes to the former, when that is likely not what they want. And so, they say no to everything.

Deckha discusses the vessel or “cluster” concept of “person” (e.g. 86) but not as much as one would expect in a proposal recommending a shift away from personhood as the legal subjectivity for nonhuman animals. The focus on anthropocentrism suggests that she has more the human being sense of person in mind. Hence, the question of what gets lost by abandoning the vessel or cluster concept of person is not addressed, specifically the important question of whether beings or Beings will have rights. Deckha says that “being” should be as protective as personhood is, which suggests that nonhuman animals would have rights, not just the small-r nineteenth-century kind under (largely ineffective) animal welfare or anti-cruelty statutes, but also the Big-R twentieth-century sort that many animal advocates call for. However, if nonhuman animals are capable of being rights holders, then they would seem to be already legal persons in the second sense, whether or not we like the residual (and perhaps inevitable) anthropocentrism involved. If that is true, why give them a status that is likely to be interpreted as a “second-best category” (160)? I think it would be better to say that what they have is a species of legal personhood, a nonhuman “quasi” kind, which would make it clear that even if it is second-best they are eligible for rights, not just the ones that they already have but other better ones (see Fernandez 2019).

Successful rights of nature initiatives might come to de-anthropomorphize personhood itself, at least in the human being sense (Boyd 2017). In fact, they are already doing this, as we have seen with rivers around the world (in India, New Zealand, and Columbia), lakes (like the section of Lake Erie in Ohio), forests (in New Zealand and the Amazon rainforest), which have all become legal persons in recent years, not in the human sense but in the vessel or cluster sense of being able to bear rights (Samuel 2019). As this movement becomes more normalized and personhood develops for important but non-living and breathing entities, we may start learning to hear “person” in non-anthropocentric terms. The rights of nature movement has the potential to be good for nonhuman animals, who given their sentience will be seen as deserving a share of these rights and protections. They may even be seen as more deserving, since, as Deckha puts it, “living bodies are more vulnerable to violence, to intense pain and suffering and to death” (157) than the other candidates for personhood she discusses in the last chapter of the book (plants, artificially intelligent machines, bacteria, coral reefs, and rivers and lakes). In this discussion she acknowledges that sentience is problematic (e.g. a negative focus on suffering) (see 145–46, 152–53) but it is an important way to prioritize (if not rank) claims for the protection of the interests of a variety of entities.

Even if “being” does not come to replace “person” completely, Deckha’s argument, that we need to learn to include and respect nonhuman animals without occluding their nonhuman animality, i.e. accept them on their own terms, is an extremely important ethical argument. It will certainly help get us to a place where we can, as she elegantly writes, “value animals not as humanity’s Other but as beings of value that can exist outside of instrumental relationships with humans and other legal persons and be protected against instrumentalization and commodification” (25). I just would not like to see a surrender of the way in which nonhuman animals are still a kind of legal person, in the vessel sense, given the potential this has to help animals fit within an (admittedly pathological) legal system.

Angela Fernandez
University of Toronto
Toronto, ON

References

Bisgould, Lesli. 2011. Animals and the Law. Toronto: Irwin Press.

Boyd, David R. 2017. The Rights of Nature: A Legal Revolution That Could Save the World. Toronto: ECW Press.

Eisen, Jessica & Kristen Stilt. 2017. “Protection and Status of Animals.” In Max Planck Encyclopedia of Comparative Constitutional Law. Edited by Rainer Grote, Frauke Lachenmann & Rüdiger Wolfrum. Oxford: Oxford University Press. <http://oxcon.ouplaw.com/view/10.1093/law-mpeccol/law-mpeccol-e71?prd=MPECCOL>

Fernandez, Angela. “Not Quite Property, Not Quite Persons: A ‘Quasi’ Approach for Nonhuman Animals. 2019. Canadian Journal of Comparative and Contemporary Law 5: 155–232.

Francione, Gary L. 1995. Animals Property and the Law. Philadelphia: Temple University Press.

Kurki, Visa A.J. 2019. A Theory of Legal Personhood. Oxford, UK: Oxford University Press.

Naffine, Ngaire. 2009. Law’s Meanings of Life: Philosophy, Religion, Darwin, and the Legal Person. Oxford, UK; Portland, Or: Hart Publishing.

Samuel, Sigal. 2019. “Lake Erie now has legal rights, just like you.” Vox. February 26, 2019. <https://www.vox.com/future-perfect/2019/2/26/18241904/lakeerie-legal-rights-personhood-nature-environment-toledo-ohio?fbclid=IwAR3fsESix5Avz6wrcJAhqpaCMWVCML
wZhKIUoacRKpySg36JzscnbZkFkfI>

Wheeler, Michael. 2020. “Martin Heideggar.” In The Stanford Encyclopedia of Philosophy. Edited by Edward N. Zalta. <https://plato.stanford.edu/archives/fall2020/entries/heidegger/>

Snyder’s book ‘Exploiting hope’ is as relevant as ever. His book is about the hope of desperate individuals seeking treatments that cannot (yet) be found in conventional medicine. The book engages with hope in the setting of phase I cancer trials, stem cell interventions, right-to-try laws and crowd funding, offering a new language to explain our discomfort with some of these quests. At the same time the book seems particularly relevant given current events. While despair and quests for novel interventions touched only a few patients with specific conditions up to a year ago, they are now familiar to us all. Early on in the COVID-19 pandemic all of us probably experienced hope for interventions that could save us from the imminent disaster.

Beyond theory and case studies, the book’s worth thus shows in its ability to label some of the recent discourse on hope. Issued preceding COVID-19, the pandemic serves as a test case for the book’s lessons to be translated to new settings. For example, as president Trump touted hydroxychloroquine as a ‘magic bullet’ early on, this promise felt wrong and uncomfortable. Yet it was difficult to satisfyingly condemn his promise on the basis that he created any false hope. Trump was not a physician but a politician, and his ideas about hydroxy were so premature in understanding COVID that no reasonable person could justifiably believe his proclamations. Hence, their hope could not really be false. Snyder’s book is worthwhile in that it gives readers a vocabulary to tag Trump’s exclamations as wrong without the need to refer to false hope.

The book’s main claim consists of three components: (1) There is something special about hope in the health care setting, (2) Thwarting of such hope creates a distinctive wrong: exploitation, (3) Such exploitation of hope is a problem of respect and a failure to fulfil a specified duty of beneficence. Developed over 8 chapters, these components are not always easy to identify. They disappear against the background of conceptual explorations and extensive case-studies. The claims are wrapped up in the two distinctive parts of the book—theoretical and applied—that are not explicitly separated. Chapters 1–4 lay out the theoretical foundations of Snyder’s claim, where his examples mainly engage with smugglers, immigration and sweatshops; topics with which Snyder is familiar (Snyder, 2010). In chapters 5–8 his claims become more tangible, as Snyder offers compelling examples from the health care setting to illustrate how hope can be exploited. These chapters offer new insights into the phenomena of exploitation, fairness and (false) hope and engage with responsibilities of identifiable people, clarifying Snyder’s claims. The theoretical chapters, preceding these, offer high-level insights on these issues too. Yet their content and claims are easier to appreciate in a second read, when the applied chapters have done their magic.

The book’s title “Exploiting Hope” illustrates Snyder’s high-level starting point. It raises the question: What does it mean, and how does this relate to ‘false hope’, a more familiar term in these settings? Snyder does not explicitly address this question, and it takes most of the book to understand Snyder’s starting point: that there might actually be a problem of respect in particular relations whereby hope is exploited, and that ‘falsity’ of the hope may not be the problem. Had Snyder engaged with the complexity of references to false hope, outlining how such references beg the question if hope could ever be false, (Eijkholt, 2020) his title and contribution would have been more concrete and clear-cut earlier in the book.

Snyder introduces the components of his primary claim in his first chapter, ‘Talking about Exploiting Hope’. As each of these components is rich in itself, their brief introduction makes the chapter dense and abstruse. Aside from engaging with exploitation, hope and false hope, he touches on the various definitions of hope and its potential synonyms and counterparts, such as dreams, hopes, fears and weaknesses. Setting the complexity of the chapter aside, its message is perhaps simple: that there can be exploitation of hope even without misunderstanding of the exploitee or fraudulent intent of the exploiter; two common presuppositions in the context of the case studies and discussions of hope.

Snyder engages with the question ‘What Is Exploitation?’ in chapter 2. He extensively sets out the intricacy in defining exploitation and its classification as morally problematic. Using the well-known example of sweatshop employees, he illustrates how exploitation has been justified as mutually beneficial in situations where these labourers might be relatively well paid and engage in this labour voluntarily. Snyder argues, however, that such exploitation would still be wrong, and uses theories of fairness to explain this. He differentiates between structural and transactional fairness, which proves to be worthwhile for the later chapters on hope in medical settings. This distinction whereby a person would, respectively, take advantage of unjust structural conditions or of unfairness in transactions, offers an explanation for two kinds of vulnerabilities that hope can create. However, without concrete examples of the medical settings to lean on, the value of this distinction for the hope discourse remained initially unclear to me.

The chapter: ‘What Is Hope’ discusses different definitions of hope, including takes from psychology, philosophy and sociology. Snyder explains that hope can sometimes involve a conscious component, but that individuals also make “leaps of hope” which may not be as rational. Hope then can give a reason to live and offer coping mechanisms as a means to control one’s destiny. Indirectly, Snyder thereby illustrates how definitions of hope struggle with rational components and affective (emotional) components of the term (Musschenga, 2019). Snyder chooses to “borrow heavily” from Adrienne Martin’s definition of hope in her book: How We Hope: A Moral Psychology (Martin, 2016) to argue beyond the limited “orthodox contemporary analytic view of hope”. He uses the enriched view of hope to illustrate that hope creates a vulnerability. This focus on vulnerability, instead of on hope’s cognitive and affective components, offers the foundation for Snyder’s claims around exploited hope.

Chapter 4 ‘Exploiting Hope’, brings the theoretical musings together, and offers the basis for one of the book’s claims: that there can be exploitation of hope on a third basis. Next to the basis in transactional or structural unfairness, exploitation may arise as a failure in the duty “to accord others the respect due to them by virtue of their humanity”. Snyder shortens this as: a duty of respect, which he eventually explains as responsibility by (partial) entrustment. In outlining this new basis, the chapter offers the bridge for transition to the case studies of the following chapter.

The case study in Chapter 5 ‘Testing Hope: Exploitation in Clinical Trials’ focuses on the hopes of individuals who participate in clinical trials. Snyder elaborates on phase 1 cancer trials and trials in low to middle income countries (LMIC) to make two points. First, he illustrates that an account of transactional fairness cannot explain potentially perceived wrongs in the creation of hope in these contexts. Indeed, participants in Phase 1 cancer trials are not reimbursed or required to pay for participation. Second, he illustrates that misunderstanding is not just about simple information provision, by illustrating the diverse origins and targets of hope. Accordingly. In the LMICs context, for example, individuals might hope that the trialled drug might become available in their region, but this is unlikely to happen. These hopes are not the result of false information, but most likely due to misunderstanding about the mechanics of drug purchasing, patenting regimes and power structures between richer and poorer countries.

The promise of stem cell interventions and miracle cures for untreatable diseases are spotlighted in chapter 6: ‘Selling Hope’. Snyder offers a snapshot overview of different unproven (expensive) stem cell applications, the promise of their all-encompassing curative powers and their regulatory context. He describes how hope might arise through consumer websites and exaggerated claims on social media. Additionally, he outlines different putative harms of buying into the promise of stem cells, and examines whether these harms define the problem of exploitation. Snyder submits that hope may be instrumental for individuals as a means to feel in control of one’s destiny, but wonders if a patients’ feeling of control and hope would be reasonable to trade off for a tumour, a serious concern with stem cell interventions, or for a significant loss of money. Snyder’s stance implies a negative answer. His application of terms like ‘trust’, ‘fiduciary obligations’, ‘relationships’ and ‘responsibility’ emerge as key features defining the exploitation of hope. These issues exist beyond financial exchanges or structural unfairness, and offer the key to Snyder’s claim about exploitation as a failure of respect, as set out in the next chapter.

In the chapter ‘Legislating Hope’, Snyder focuses on ‘the right to try’ and he finally illustrates how a failure of respect can be at the heart of exploitation. This chapter offers new dimensions to understand the exploitation of (false) hope. I.e. that hope might not be generated only through persons, but also arise out of legislation or a political context. Snyder describes the landscape and historical context of right-to-try initiatives, which were born out of hopes that experimental interventions would be available in much earlier stages of development. As Snyder explains, however, these ‘right to try’ laws do little to improve access to experimental interventions. For example, they do not require developers to actually provide the therapies. Thus, the hope for increased access remains fruitless. Snyder illustrates how ideological ends like personal liberty and freedom have driven legislative efforts. While the hope connected to right-to-try therapies might remain fruitless, this seems irrelevant for legislators and politicians. The fundamental problem is that politicians, in this case, are partially entrusted with the obligation to be transparent and open, yet they do not meet these responsibilities insofar as right-to-try initiatives are broadly fruitless. Accordingly, the primary problems with these laws do not lie in transactional and structural fairness. Such issues may arise, as some parts of right-to-try laws prioritize individuals with an ability to pay (an issue of transactional fairness). Further, they are a risk to the system in undermining institutions that need trust, such as the FDA (an issue of structural fairness). But for Snyder, the main problem with these right-to-try initiatives should be labelled as a problem of ‘respect’. That is, politicians do not honour obligations of transparency and instead exploit hope for political or ideological purposes.

Medical crowdfunding is the last case study in the chapter ‘Networks of Hope’. This chapter shows that the exploitation of hope isn’t just a matter of malicious intent, or only generated by malicious people. Snyder describes how medical crowdfunding creates communities who serve as a conduit for (false) hope. Communities are eager to assist in funding treatments. Online messages about these treatments on medical crowdfunding websites risk perpetuating false claims about the safety and efficacy of interventions and thus feed false hope. Snyder’s extensive and detailed overview narrates how the proliferation of false hope might be accidental rather than planned and might not necessarily be deliberate from those within the community of funders. Even if Snyder describes that the companies behind the crowdfunding initiatives have responsibilities, these companies are only indirectly involved in the exploitation of hope. Instead, Snyder submits that the communities are (unfortunate) networks of exploitation. In generating emotions and perpetuating false information connected to the hope for a cure, the networks and the crowdfunder violate their partial entrustment to make good use of the donor’s funds.

Snyder finishes the book by concluding that there are 3 reasons why the specific respect-based account to exploitation is preferable over any other basis designed to explain the exploitation of hope. He concludes that (1) Fairness-based accounts are either too limited or too wide. (2) Specified respect-based accounts are inclusive of the benefits and advantages of fairness based accounts, and (3) specified respect-based accounts allow for specificity to context lacking in other accounts. His conclusion is representative for the rest of the book: it is original though complex. The chapters each offer an interesting read, though sometimes they give rise to more questions than they answer. The conclusion, for example, is helpful for understanding all the points that Snyder wishes to make. Still, it makes us wonder if this book is really about hope and its exploitation, or if it is really about making an argument for how a respect-based account regarding the exploitation of hope is more helpful than anything else.

In conclusion, the overarching message of the book is worthwhile, but its message is not always easy to distill. Reading through some of its intricacies, the book offers a new way of thinking about medically relevant cases in which hope arises. While this hope may not necessarily be qualified as false hope, the book offers a language to explain distaste for how hope is generated and used. In introducing the phrasing ‘exploiting hope’ the book offers us a terminology to evaluate situations in which desperate people might fare on fruitless hope. Snyder’s book gave me a new way of expressing my discomfort with pursuits of unproven stem cell interventions, and beyond. To return to the beginning of this review, the book allows me to qualify Trump’s explanations without needing to refer to false hope. Instead I can refer to him exploiting the hope of despairing populations for his political gain.

Marleen Eijkholt
Leiden University Medical Center
Leiden, Netherlands

References

Snyder, Jeremy. “Exploitation and sweatshop labor: Perspectives and issues.” Business Ethics Quarterly (2010): 187–213.

Eijkholt, Marleen. “Medicine’s collision with false hope: The False Hope Harms (FHH) argument.” Bioethics 34.7 (2020): 703–711.

Musschenga, Bert. “Is there a problem with false hope?.” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine. Vol. 1. No. 4. US: Oxford University Press, 2019.

Martin, Adrienne. How we hope: A moral psychology. Princeton University Press, 2016.