Conference: American Society for Bioethics and the Humanities, Oct 19-22, 2017

This week we are highlighting four sessions from the upcoming American Society for Bioethics and the Humanities Annual Conference in Kansas City, MO from October 19-22, 2017. The sessions are categorized under Religion/Culture/Social Sciences, and include topics interesting to scholars in multiple disciplines. For the full conference schedule, visit the ASBH 2017 meeting website here.


Panel Session: China’s Forced Organ Harvesting: A Central Test of Our Time

Thursday, Oct 19 – 1:30-2:30pm

With David Li, Yiyang Xia, and Grace Yin

A decade of research by international investigators has concluded that the Chinese party-state is systematically killing prisoners of conscience on demand to supply its vast organ transplant industry. In June 2016, the U.S. House of Representatives unanimously passed H.Res. 343, condemning the harvesting of organs from Falun Gong adherents and other prisoners of conscience in China.

Researchers examined hundreds of transplant hospitals in China and analyzed data about their capabilities, capacity, personnel strength, and potential patient groups from medical journals, media reports, official statements, web archives, and government policies and funds.

The research estimates that China now performs between 60,000 and 100,000 transplants per year–more than any other country in the world. Even based on government-imposed minimum requirements, China could have performed more than one million total transplants since 2000.

The official organ sources–death row prisoners and voluntary donors–account for only a small fraction of the total volume. The victims are primarily Falun Gong meditators killed through organ extraction outside of judicial process as part of the Communist Party’s campaign to eradicate the group.

The issue of forced organ harvesting presents an opportunity and an obligation to bring medical and academic institutions to the center of bioethics. Presenters will articulate with the audience concrete actions to prevent the complicity of American institutions and individuals, including providing training, equipment, recognition, collaboration, and organ tourism to Chinese institutions that are participating in this crime. Comprehension of the issue helps institutions and individuals make informed choices and uphold social responsibility.


Panel Session: Pathways to Convergence: Sharing a Process that Aimed to Examine the Diverse Perspectives of Catholics on Advance Care Planning and Palliative Care in the United States

Thursday, Oct 19 – 2:45-3:45pm

With Robert Barnet MA MD, John Carney MEd, Matthew Pjecha MSPP, and Carol Taylor MSN PhD RN

Pew Charitable Trusts recently funded a project to examine views among Catholics in the U.S. regarding end-of-life, palliative care and advance care planning. Center for Practical Bioethics (CPB) served as coordinator for the project. A six-member steering group representing ecclesial, Catholic Health, and ethical interests, along with CPB (a secular organization) invited three groups of eight Catholics from different disciplines and perspectives to capture conservative and progressive themes within American society and among practice settings. Roles and responsibilities within those realms were prominently featured in deliberations with goal of clarifying areas of divergence, convergence and possible paths forward. The groups examined: – Social responsibility derived from tradition (how the Church presents itself and speaks in the public square and what informs this presence) – Covenant and contract (roles of free and informed consent in advance care planning and decision-making between patients and providers) – Shared decision making (Church teaching that informs specific decisions faced in goals of care conversations and interdisciplinary care planning for palliative care patients)Identified as Pathways to Convergence the groups aspired to identify common values and principles and report on the results following a convening. Presenters will explore how ethicists can use the processes, methods and findings of this group when workings with patients for whom faith tradition may play an important role and among providers, and others who share different perspectives on end of life to facilitate optimal advance care planning and palliative care.


Paper Session: Religion, Culture, and Social Sciences Paper Session 1

Thursday, Oct 19 – 4:00-5:00pm

Creating Compliance: Using Games to Engage Patients in Medical Management 

by Kristel Clayville

This presentation offers a method for increasing compliance among transplant patients. The recommendations presented are from non-medical clinical observation from a chaplain who deals with the day-to-day coping skills of transplant patients. The case studied focuses on the emotional aspects of compliance, and the attendant interpretation and recommendations focus on the social, emotional, and spiritual aspects of dealing with the existential difficulties of undergoing a solid organ transplant. Ultimately, the recommendations are for presenting medical compliance as a game that patients play rather than as a set of medical practices that sustain life. Thinking in terms of games not only helps the patient’s motivation, but it also offers the family and support network a language with which to engage the patient and help with the practices of compliance.

The Ethics of Influence: Celebrity Physicians and Social Media 

by Patrick Herron

Growth of social media has not only changed how individuals interact socially, but in how we engage with professionals too. Recognition of a physician’s social media “influence” is based on her/his ability to affect other people’s thinking. The greater the influence, the more appeal that individual has to companies or other individuals who might want to promote an idea or sell a product. Celebrity actors/athletes are often seen as prime influencers with regards to advertising campaigns, (i.e. “Got milk?” and “Milk: it does a body good”) to increase sales.

Celebrity physicians such as Dr. Mehmet Oz have used influence to promote health products and interventions, which raised considerable debate as to whether there were lapses in ethical and professional judgment. Not all physicians will have the platform of a Dr. Oz, but social media has created ample opportunities for many lesser known physicians and trainees to leverage their own professional expertise and growing social media prominence to become influencers. Such financial partnerships raise questions about conflicts of interest, professionalism and potential violations of an ethical duty of care.

The impact of social media on consumer healthcare decision making along with the dependence by consumers on their friends and families for healthcare product reviews (often shared via social media) has dramatically changed marketing. Consumer confidence and increased reliance on the opinions of physicians they follow via social media accounts can have a detrimental affect on the patient-physician relationship that consumers have with their actual health care provider.

Make Aging Great Again: Imagining a YUGE Lifespan

by Leah Fowler

The new era of longevity research seeks extended healthy life, with hoped-for interventions that would slow the aging process so that one year of clock time is matched by less than one year of biological time. Infirmities of old age would compress into a short period at the end of life—thereby increasing the ‘health span’. The benefit: living long and living well. Embedded in longevity discourse is humanity’s oldest and most pervasive wish: defying death. Slowing the process of aging, it is hoped, will lead to treatments to reverse it.

Social arenas and actors at the center of longevity are grounded in big data, big investment, and a breathtaking sense that “the person who is born today will live to 200.” A prominent longevity researcher says, “It is ageist and morally repugnant to not treat aging as a disease that needs a cure.” These expectations, fueled by aging populations, are rooted in narratives that render the possible futures of long, healthy lives as inevitable and real today. Bringing the future into the present—conveying hope and fear as moral vectors— introduces an imperative to pursue the extension of the life- and health spans as a matter of course, and devalues alternatives as non-progressive or even immoral. This paper presents a qualitative analysis of longevity stakeholders discussing the moral imperative to extend human life and free of the ravages of aging. Their narratives illustrate future social imaginaries that are central to the movement and spur us to take action today.


Paper Session: Religion, Culture, and Social Sciences Paper Session 2

Sunday, Oct 22 – 9:15-10:45am

Religion Matters: A Critical Response to Daniel Weinstock’s Appraisal of Conscientious Refusal

by Nicholas Brown

Daniel Weinstock has recently argued that it is necessary to make a distinction between freedom of conscience and freedom of religion when evaluating questions of conscientious refusal. Weinstock holds a right to refusal to care on the grounds of conscience enjoys a more privileged status than refusals made on religious convictions inasmuch as he judges religious refusals to be non-essential to the flourishing of a robust democratic ethos, and because he finds religious objections to lack a sufficient epistemological and ethical rationality that is publicly “reasonable.” The purpose of this paper is to offer a response that is both critical and sympathetic. Toward that end my argument is as follows: First, I will critically evaluate the underlying epistemological assumptions undergirding Weinstock’s privileging of conscientious over religious refusals to care. More specifically I will draw upon the philosophical work of Nancey Murphy and Michael Polyani to show not only why Weinstock’s account of reasonability is inadequate, but also why a religious ratio is just as publicly accessible as a non-confessional one. Next, I will draw upon Romand Cole’s political theory to demonstrate why religious perspectives are not only vital to the flourishing of a democratic ethos, but are so precisely because they help inculcate the critical mode of conscience that Weinstock endorses. Finally, I conclude by suggesting that Lisa Sowle Cahill’s articulation of theology as a participatory mode of discourse offers a more compelling basis upon which to adjudicate the ethical tensions entailed in conscientious refusal that Weinstock rightly identifies.

The Church Amendment Reconsidered: Lost Assumptions of the First Federal Healthcare Conscience Clause

by Ronit Stahl

In the wake of Roe v. Wade (1973), Congress passed the Church Amendment, which allows doctors, nurses, and hospitals to refuse to perform abortions or sterilizations on the basis of religious or moral convictions. As the foundation of subsequent federal and state conscience clauses, the Church Amendment operates as a powerful tool that enables healthcare providers and institutions to opt out of providing—and thereby restrict access to—contested medical interventions, typically in reproductive, end-of-life, and LGBT healthcare. Yet the legislative history of the Church Amendment offers a more complicated and nuanced set of assumptions about the intended effects and implementation of the nation’s first healthcare conscience clause. This talk will discuss the presumptions about access, disclosure, scope, and impact embedded in the Church Amendment and consider the value of a countervailing narrative about conscience clauses in an era of expanding conscience legislation.

Hinduism and Bioethics: Some Basics and Some Applications

by Deepak Sarma

With an increasing number of patients with Hindu heritage and background, it is imperative that the bioethics community begins better versed in germane issues pertinent to Hindus. What, for example, is the Hindu position on brain death and organ transplantation? What sorts of neurogenomic treatments and interventions are possible given the Hindu view of the self? How do these perspectives agree, or conflict with prevailing discourses in bioethics? Since Hindus makeup only a small population of patients they are further from the ‘center’ and from most patients. Healthcare providers, in this connection, will need to expand their knowledge of those whose beliefs are not at the center.

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Book Review: “A Surgeon in the Village”

This week we are highlighting a book review written by Veronica Tomasic originally published in MedHum Daily Dose, a blog for the intersections of medicine and humanities, available here. The book is entitled A Surgeon in the Village: An American Doctor Teaches Brain Surgery in Africa (2017) by Tony Bartelme, published by Beacon Press.


A Surgeon in the Village: An American Doctor Teaches Brain Surgery in Africa (Beacon Press, 2017) is the story of American neurosurgeon Dr. Dilan Ellegala’s efforts to provide medical aid in Tanzania. It was written by Tony Bartelme, an American reporter for Charleston, South Carolina’s Post and Courier; Bartelme is a three time Pulitzer prize finalist, including for the series that formed the basis for this book. The Post and Courier’s executive editor relayed a story to Bartelme about a “crazy brain surgeon who opened a guy’s head with a wire saw in Africa”; Bartelme’s interest was piqued and thus began the story that he narrates here (269).

A Surgeon in the Village is a bildungsroman of sorts. It describes the beginning of Ellegala’s career as a neurosurgeon and his personal journey toward finding meaning in his work. It is also about his ideas for how foreign medical aid should be delivered, and the growth of an organization, Madaktari Africa (Madaktari means doctors in Swahili), that he formed as a result of his ideas.

We first meet Ellegala when he has just completed his neurosurgery training in the US. He is burned out after years of grueling residency and fellowship programs. He travels to Tanzania for six months, volunteering to perform brain surgery at a small, remote hospital. Ellegala is determined to spend as much time as possible vacationing while there. But his plan changes after he starts to attend daily morning meetings where the visiting foreign students and MDs, and local medical personnel gather to discuss their cases. Ellegala observes that the foreign students sit in a privileged position at the front of the room, while the local personnel — such as assistant medical officers (or “AMOs,” who have paramedic plus a few years’ level of training) — stand at the back of the room. This disturbs his sense of propriety — in the US, medical students typically stand or sit behind attendings and residents. He insists that the students and local personnel trade places, a shift that becomes a central organizing metaphor for the book. The change symbolizes the degree of responsibility Ellegala believes the local staff should have for the care they provide, and the respect he feels they should be shown by foreign visitors.

Galvanized, Ellegala starts to rethink traditional models for providing aid in Tanzania, a country with limited resources to train and keep its own MDs. Rather than encourage foreign MDs to travel to a hospital, perform surgeries for a brief period of time and then leave, Ellegala realizes that it makes more sense to train local AMOs to perform neurosurgical procedures. If they can take over, he reasons, a hospital will transition from being dependent on outside help to being self-sustaining. Ellegala notices an AMO who has a surgeon’s confidence about him, Emmanuel Mayyega, and he trains him to diagnose and perform operations for a number of conditions, such as intracranial tumors, head trauma, and hydrocephalus. Eventually, Mayyega trains others. And thus began the “train forward” movement in Tanzania.

Bartelme weaves through his account the challenges Ellegala faces in his career as he devotes time, money, and considerable energy to Madaktari Africa. He also describes some of the ethical issues that are raised by the “train forward” practice. For example, should we accept that people will die in countries where there are not enough traditionally-trained MD surgeons to perform surgeries? Or should surgeries in these countries be performed by people with limited training and supervision because they can save lives? And what about the liability exposure for people trained under such circumstances? One area where the book could have been strengthened would have been to devote a chapter to the history of aid organizations and their varied philosophies. While mention of organizations such as Smile Train, or Paul Farmer’s Partners in Health, among others, are interspersed throughout the book, it was never clear to me whether Ellegala was the first person to conceptualize “train forward,” or whether such a practice had already been established in other countries.

Altogether, A Surgeon in the Village is a warmly engaging account of one doctor’s efforts to make a difference in a part of the world that has limited medical resources, and the personal rewards his efforts afforded him. It would be useful for medical providers and students to read, as well as anyone interested in how best to provide aid to other countries.


Veronica Tomasic (PhD, JD) practices community law in the New Haven, CT, area. She is a scholar of literature, painting, psychoanalytic theory, and end-of-life issues.

For more information about the book, visit the Beacon Press website, here.

Article Highlight: Vol. 41, Issue 2, “The Tipping of the Big Stone—And Life itself. Obesity, Moral Work and Responsive Selves Over Time”

This week we explore Lone Grøn’s The Tipping of the Big Stone—And Life itself. Obesity, Moral Work and Responsive Selves Over Time. Grøn explores moral work and moral selves in the context of the obesity epidemic and weight loss processes. Cheryl Mattingly’s notions of “moral laboratories” (Moral Laboratories: Family Peril and the Struggle for a Good Life, University of California Press, Berkeley, 2014, available here) explore moral cultivation over time that cannot be disconnected from notions of biographical and narrative self. Building off Mattingly’s concepts, as well as philosopher Bernhard Waldenfels’ phenomenology, Grøn proposes the notion of a responsive self.


Grøn begins by introducing Rita, a participant in the obesity program at The Lifestyle Center, a Danish patient school which teaches self-care, diet, and exercise practices to people suffering from or at risk of what is termed “lifestyle-related diseases.” Grøn explores Rita’s reflections on obesity and weight loss, with specific attention to the transformation in notions of self, agency, and morality from fieldwork between 2001-2003 and 2014-2015.

Rita asks herself questions about her weight loss struggles, such as, “Why don’t I grow-up enough to take responsibility for my own well-being? Why is what I know to be the right thing to do a million miles removed from what I do in reality?” References to fighting the evil will or desire of your body, to sinning and backsliding, are plentiful and situate weight loss in the domain of morality. This places the concerns and reflections on weight-loss within broader historical and cultural ideas on self, agency, and morality, asking what kind of self one is able to be in the face of conflicting wills and moral demands.

Grøn takes up an argument that Mattingly put forward and developed, namely that moral cultivation over time cannot be disconnected from a notion of self.  Up until the last decade of the second millennium, attention to the relationships between body weight, food, and health were scarce in a Danish setting marked by cultural practices and values of “hygge,” that is, socializing by sharing food and alcohol, often to excess. Over the past two decades, this relationship has changed dramatically, and the consumption of food and drink have become morally charged in all corners of Danish society, from family spaces to the widespread network of institutions constituting the Danish welfare system. Further, a politically announced “paradigm shift” in the beginning of the second millennium in Danish health care services shifts attention from the treatment of acute diseases to the prevention of chronic diseases.

Grøn states that in many ways being obese has become an uninhabitable position. What used to be big and cozy (“hyggelig”) has become obese and alien. In the face of overwhelming personal and family histories of unsuccessful attempts at weight loss, temporary success is usually followed by increasing weight gain in a pattern widely documented in the scientific literature on weight loss processes over time. Both personal and family experience and scientific evidence define success as improbable, yet families struggling with obesity continue to experiment against the odds all the same. Thus, for Grøn, life itself becomes a laboratory.

Taking the experienced and biographical self seriously has allowed acknowledgement of the immense work of moral experimentation that Rita has engaged in over a lifetime. Furthermore, many other events and projects make up her life, including the cultivation of healing powers, of a garden of flowers, as well as of a home, family, and work life. This picture of Rita’s moral self could easily be lost if we were only concerned with the “obese” self, which can be constituted through workings of the bio-power and governmentality techniques of the Danish welfare state.

Grøn concludes by detailing the characteristics of the responsive self, emerging within the demand response dynamic. The responsive self displays both an event form that persists over the years (“I respond, therefore I am”), but also changes in terms of the content of the response. Thus, the notion of the responsive self stresses equally the suffering and the agentive dimensions of action—”an active passivity and passive activity.”


Lone Grøn is a Senior Researcher at VIVE The Danish Centre of Applied Social Science in Denmark, as well as a Senior Project Manager at KORA. She has done extensive anthropological research and ethnographic fieldwork on patient perspectives on chronic diseases, obesity, and behavioral change, highlighting the complexities of health work in the contexts of everyday lives. Her recent areas of research concern include social contagion in epidemics of non-communicable diseases and conditions, specifically in relation to kinship, relatedness and obesity; vulnerability and inequality in old age and the search for the good old life; and theoretical developments within philosophical and moral anthropology as well as phenomenological approaches in anthropology, which serve as the epistemological ground for experience-near and close-up studies of patients, citizens and families.

Book Release: “Fat Planet: Obesity, Culture, and Symbolic Body Capital”

This week we are highlighting a recent book release from the University of New Mexico Press entitled Fat Planet: Obesity, Culture, and Symbolic Body Capital (2017), edited by Eileen Anderson-Fye and Alexandra Brewis. As a reminder, in June the CMP blog will be switching to our bi-weekly summer schedule.

Photo via UNM Press

The average size of human bodies all over the world has been steadily rising over recent decades. The total count of people clinically labeled “obese” is now at least three times what it was in 1980. Around the world, governments and other organizations are deploying urgent anti-obesity initiatives. However, one unintended consequence of these efforts to tackle the “obesity epidemic” has been the increasing stigmatization of “fat” people. This rapid proliferation of fat stigma has profound implications for both human suffering and disease. Fat Planet represents a collaborative effort to consider at a global scale what fat stigma is and what it does to people.

Making use of an array of social science perspectives applied in multiple settings, the authors examine the interplay of weight, wealth, history, culture, and meaning to fat and its social rejection. They explore the notion of symbolic body capital — the power of non-fat bodies to do what people need or want. They also investigate how fat stigma relates to other forms of bias and intolerance, such as sexism and racism. In so doing, they illustrate the complex and quickly shifting dynamics in thinking about fat — often considered deeply personal yet powerfully influenced by and influential upon the broader world in which we live. They reveal the profoundly nuanced ways in which people and societies not only tolerate, but even sometimes embrace, new forms of stigma in an increasingly globalized planet.

Chapters include:

  • Making Sense of the New Global Body Norms. Alexandra Brewis
  • From Thin to Fat and Back Again: A Dual Process Model of the Big Body Mass Reversal. Daniel J. Hruschka
  • Managing Body Capital in the Fields of Labor, Sex, and Health. Alexander Edmonds and Ashley Mears
  • Fat and Too Fat: Risk and Protection for Obesity Stigma in Three Countries. Eileen P. Anderson-Fye, Stephanie M. McClure, Maureen Floriano, Arundhati Bharati, Yunzhu Chen, and Caryl James
  • Excess Gaines and Losses: Maternal Obesity, Infant Mortality, and the Biopolitics of Blame. Monica J. Casper
  • Symbolic Body Capitol of an “Other” Kind: African American Females as a Bracketed Subunit in Female Body Valuation. Stephanie M. McClure
  • Fat Is a Linguistic Issue: Discursive Negotiation of Power, Identity, and the Gendered Body among Youth. Nicole L. Taylor
  • Body Size, Social Standing, and Weight Management: The View from Fiji. Anne E. Becker
  • Glocalizing Beauty: Weight and Body Image in the New Middle East. Sarah Trainer
  • Fat Matters: Capitol, Markets, and Morality. Rebecca J. Lester and Eileen Anderson-Fye

For more information, visit the University of New Mexico Press website, available here.


Dr. Eileen Anderson-Fye is a medical and psychological anthropologist, and the founding director of the Medicine, Society, and Culture (MSC) Master’s Degree track in Bioethics at Case Western Reserve University School of Medicine. Drawn to interdisciplinary study as an undergraduate, Dr. Anderson-Fye developed the MSC degree track for students to explore how factors beyond biomedical science contribute to health and wellness. Social and cultural constructs, historical and rhetorical influences, literature, and philosophy all shape perceptions of health, illness, and recovery, which in turn affect choices, beliefs, and behaviors. Those who appreciate this complex and multi-layered interplay will be able to play pivotal roles in enhancing how care is delivered – and the outcomes it yields.

Dr. Anderson-Fye’s perspective on these issues has been informed by extensive research on the mental health and well-being of adolescents and young adults in contexts of socio-cultural change. Her most enduring project is an ongoing longitudinal study of how subjective perceptions of current and future well-being allowed the first mass-educated cohort of Belizean schoolgirls to overcome severe threats to their mental and physical health. More recently, she led a team’s study of the psychiatric medication experiences of undergraduates at North American university campuses, where a mix of quantitative and qualitative methods revealed stark differences between reported and actual usage. Dr. Anderson-Fye is writing a book about the findings and their implications; it is tentatively titled, Young, Educated and Medicated. Dr. Anderson-Fye has an A.B. From Brown University in American Civilization.  She earned her M.Ed. and Ed.D. in Human Development and Psychology from Harvard University. Her training has included work at Harvard Medical School in the Department of Social Medicine and Massachusetts General Hospital, and postdoctoral fellowships in Interdisciplinary Studies of Culture and Neuroscience and Culture, Brain and Development at the Semel Institute for Neuroscience in the David Geffen School of Medicine at UCLA.

Dr. Alexandra Brewis is a President’s Professor and Distinguished Sustainability Scientist at Arizona State University, where she also co-leads the translational Mayo Clinic-ASU Obesity Solutions initiative and serves as the associate vice president of Social Sciences. Her research interests includes how and why effective obesity solutions are undermined by weight stigma, damaging and distressing for millions of people and is rapidly spreading globally.

Dr. Brewis has a PhD in Anthropology from University of Arizona and was an Andrew W. Mellon Foundation postdoctoral fellow in anthropological demography at the Population Studies and Training Center at Brown University. Before joining ASU, she taught at the University of Auckland in New Zealand and University of Georgia. At ASU, Dr. Brewis served as Director of the School of Human Evolution and Social Change from 2009-2017.

From the Archive: “Exposure and Exclusion: Disenfranchised Biological Citizenship among the First-Generation Korean Americans”

This week on the blog we are featuring an article from a past issue of the journal as part of our “From the Archive” series. In this highlight, we explore “Exposure and Exclusion: Disenfranchised Biological Citizenship among the First-Generation Korean Americans” by Taewoo Kim, Charlotte Haney, and Janis Faye Hutchinson, available here. This article was featured in Volume 36, Issue 4 (December 2012).


In the midst of an uncertain future of health insurance in the United States, it is important to reflect on how larger social systems affect individual experiences of health and illness. Our contributing authors at Culture, Medicine, and Psychiatry frequently express the need for ethnographic approaches to healthcare analysis. In this article, the authors documented how the healthcare system in the United States in 2012 disenfranchised those of marginal health insurance status. Based on fieldwork with a highly uninsured and underinsured Korean American population, the authors argued that the vulnerability of these disenfranchised biological citizens is compounded through exposure to health risks and exclusion from essential healthcare.

According to the authors, the first-generation Korean Americans interviewed faced the double burden of increased health risks from long, stressful work hours and lack of access to healthcare due to the prohibitive costs of health insurance for small business owners. Even as their health needs became critical, their insurance status and costly medical bills discouraged them from visiting healthcare institutions.

Based on a multi-sited ethnography of Korean–American communities in Houston, Texas, and Los Angeles, California, this study attempted to describe the condition of marginal insurance in the United States. The authors trace health risks among Korean Americans from “daily life to life in crisis.” By mapping the connections from an unequal social structure where risks are unevenly distributed, to the disproportionate prevalence of disease, the authors discuss the impact of inequality on the bodies of the disenfranchised population.

The authors build off of Nikolas Rose’s term biological citizen, defined as encompassing “all those citizenship projects that have linked their conceptions of citizens to beliefs about the biological existence of human beings.” The authors argued that their participants were left out of such developments and strategies due to the participants’ place in the employment structure and healthcare payment schemes. The high concentration of small business owners among the first-generation Korean Americans led to long work hours in risk-laden conditions as well as high rates of marginal insurance driven by sky-rocketing private health insurance costs. These risks were compounded by limited access to appropriate preventive measures and medical intervention.

This combination of exposure to precarious working conditions and exclusion from healthcare increases Korean Americans’ vulnerability, particularly to chronic illnesses including hypertension, high blood cholesterol, diabetes, and heart disease. These conditions are the bio-devaluation that results from biological disenfranchisement.

Through detailed ethnographic research with uninsured and underinsured Korean Americans working in family-run businesses, the article focused on the daily practice of “doing-without-health,” pushing the discussion of barriers to healthcare-seeking toward an examination of how those barriers cultivate subjectivities of disenfranchised biological citizenship. The authors also describe how such disenfranchisement multiplies the participants’ vulnerabilities by exposing them to disproportionate health risks and excluding them from essential care.

First, the authors examined the daily-lived experience of risk exposure. Social and economic contexts of risk included the uneven distribution of economic activities and opportunities that Korean Americans face after immigration. The authors discussed several circumstances which contributed to social and economic risks, such as institutional barriers which disregarded educational attainments and professional experiences in South Korea, linguistic barriers, already difficult and stratified economics in the United States, stressed relationships with the surrounding communities, and fear of robbery and theft. These factors exposed the Korean American participants to health risks, such as overwork and stress, on a daily basis.

Second, the authors discussed how exclusion from care operated within the studied community settings. Uninsured and underinsured participants experienced discouragement from using healthcare services. A long-term uninsured status and widely circulated stories of financially devastating medical bills create a distance between Korean Americans and healthcare institutions. Underinsured participants similarly encountered healthcare discouragement through high out-of-pocket costs. With tight budgets, underinsured participants feared the high cost of medical care and avoided visiting doctors.

Combined, these factors illuminated the embodiment of the social inequality among uninsured and underinsured Korean Americans; the authors linked exposure to health risks and exclusion from healthcare. Through an ethnographic examination of the daily practice of “doing-without-health” among a marginalized sub-group in society, the authors articulated how disenfranchised biological citizenship goes beyond creating institutional barriers to healthcare and shaping subjectivities of the disenfranchised.

Article Highlight: Vol. 41, Issue 1, “‘Hunger Hurts, but Starving Works.’ The Moral Conversion to Eating Disorders”

This week we’re highlighting Gisella Orsini’s “Hunger Hurts, but Starving Works.” The Moral Conversion to Eating Disorders article. Orsini suggests that eating disorders are the result of moral self-transformative processes. Women in Malta and Italy with anorexia, bulimia, and binge eating disorders are thus actively and deliberately engaged with cultural moral values embodied in thinness and the control of bodily needs and pleasure. Thus, the more control over hunger, the higher the level of satisfaction and the degree of moral conversion achieved.

Orsini begins by discussing the history of eating disorders within the Diagnostic and Statistical Manual of Mental Disorders (DSM), highlighting that the explanations of onset, classification, and treatment has often been, and to a large extent remains, unclear. Yet before the medical category of “eating disorders,” behaviors which would now be considered symptoms of pathology had different meanings, often characterized as holy behavior or as a wonder of nature. Medieval European nuns often adopted strict starvation practices in order to reach unity with Christ. Pre-Victorian and Victorian era “fasting women” were admired by the rest of society and were considered curiosities by scientists and doctors. Orsini narrows the modern gap between the biomedical construction of illness and the self-perception of patients through an understanding of the narratives of people with eating disorders and framing it as a process of self-transformation.

Between 2012 and 2014, Orsini conducted comparative qualitative research in Malta and Italy. Even though the prevalence of eating disorders was relatively similar between the two countries, the social reactions to eating disorders were markedly different. The Italian government considers eating disorders to be a “social epidemic, which leads to serious problems in terms of public health.” Malta, by contrast, has almost no concern with eating disorders at the public level as well as a lack of public and private treatment institutions. Both countries aligned with the international trend of eating disorders being mostly female.

In framing eating disorders as a moral conversion, on the basis of the interview narratives she collected, Orsini suggests that eating disorders could be considered as the body becoming a physical symbol of an attempt to redefine their lives. Yet the biomedical approach views the behavior of people with an eating disorder as stemming from a mental condition. Orsini states, “anorexics, bulimics and binge eaters actively and deliberately adopt behaviors in relation to food and their own bodies in order to morally improve themselves.” All of Orsini’s participants sought to dominate their bodily needs in order to improve themselves morally. Furthermore, all recalled negative moral feelings, such as guilt and shame, when their behavior was not in line with their moral values of purity and control. In this way, moral values became moral imperatives.

Yet not all people with eating disorders reacted to their diagnosis’ pathologization in the same way. Anorexics tended to be the most resistant to their newly achieved satisfactory personhood with illness. Bulimics and people with binge eating disorder, on the other hand, tended to experience relief at being labeled “ill,” identifying more with their condition as a disorder rather than a moral conversation.

Orsini states that although the main objective of people with eating disorders is thinness, this thinness is simply the end result of several behaviors that aim to ameliorate one’s self in highly moral terms. The process of a moral conversion requires an individual to adopt views, attitudes, or patterns of behavior that are generally thought of as morally better than their previous views. Orsini then further divides the three discussed eating disorders into levels of conversion: achieved moral conversion for anorexia nervosa, attempting moral conversion for bulimia nervosa, and rejecting moral conversion for binge eating disorder.

In the case of anorexia nervosa, Orsini presents the circumstances of Elisa, a 28-year-old woman in residential treatment in Italy. Elisa’s narrative of transforming her body from being “sinful and dirty,” to a “pure and sinless body” through her anorexia is an example of an achieved moral conversion. Yet she was forced to abandon her new perspectives and values in order to live. Elisa had to decide if the costs of her anorexic beliefs justified the benefits, leading to a painful moral choice.

For bulimia nervosa, Orsini discusses that people who are diagnosed with bulimia after having had a history with anorexia can be said to have lost the ability to practice the core values associated with anorexia, even though they still consider such values (such as controlling hunger and thinness) to be core values in their lives. Orsini’s participants who were not diagnosed previously with anorexia often spoke of their daily frustrating struggle to control their hunger; while they are unable to totally control their eating, the compensatory behavior of self-induced vomiting, laxative use, or over-exercising was still an attempt at thinness. This continuous attempt to control their hunger, followed by “repairing the damage caused by their moments of weakness,” is an example of how they are attempting moral conversion.

Finally, for Orsini, binge eating disorder is seen as a case of rejecting moral conversion. While the people in Orsini’s research diagnosed with binge eating disorder still described thinness and control over food as a core value in their lives, unlike the anorexics and bulimics, people with binge eating disorder did not believe they deserved to ameliorate themselves. Their self-transformative process can be understood as a form of self-punishment as well as a statement of their perceived failure in being the person they want to be.

Michelle, a 34-year-old Maltese woman, spoke of her body as a sign of failure after gaining a significant amount of weight during and after pregnancy. Orsini states Michelle never referred to her body in aesthetic terms, such as “ugly,” but instead as a mark of her inabilities and moral dissatisfaction. She states, “If I was slimmer, if I am slimmer, I would be a better person” (p. 134). For Michelle, bingeing was a manifestation of her moral failures.

In conclusion, Orsini reiterates that only viewing people with eating disorders as having a physiological or psychological dysfunction underestimates the active role their conditions and cultural meanings of their behaviors. Through her analysis of the narratives of people with an eating disorder in Malta and Italy, she reveals how anorexics, bulimics, and binge eaters deliberately engage in a number of practices aimed at losing weight in order to improve themselves in moral terms. Their actions are further divided into an unofficial moral hierarchy, wherein anorexics embody an ideal moral-selfhood.

SfAA 2017 Conference Feature Part 2: “Experiences and Identity in Long-term and Chronic Illnesses”

This week on the blog we are continuing our feature of a paper session from the 2017 Society for Applied Anthropology (SfAA) Annual Meeting which took place in Santa Fe, New Mexico from March 28th through April 1st. This session was entitled “Experiences and Identity in Long-term and Chronic Illnesses” and featured Beth Moretzsky, Karen Dyer, Marlaine Gray, and Ellen Rubinstein (full program from the SfAA meeting available here). Here, we present a summary of Karen Dyer and Marlaine Gray’s presentations. Part one of this feature is available here.

Karen Dyer (VCU) – Examining Health and Illness after Treatment for Colorectal Cancer: Long-term Healthcare Needs and Quality of Life

From her research, Dyer discusses the attachments formed between people with a history of colorectal cancer and their oncology team, which stems from both a fear of recurrence of illness and an especially strong emotional bond forged through mutual experiencing of a life-threatening disease. Dyer also discusses the consequences of the ambiguity of cancer follow-up care. Questions frequently include, who is the best doctor to see? If multiple care providers are seen by people with a history of colorectal cancer, will tests will be duplicated or even missed? Which emerging symptoms are serious enough to warrant further investigation? This continuing surveillance of a “survivor’s” body encompasses many medical repercussions from the treatment of cancer and reality of recurrence risk, often transforming people into life-long patients.

Dyer interviewed 30 participants in Virginia who had a history of colorectal cancer and were at least five years post-treatment. As this category of people with a history of colorectal cancer increases, there is a growing number of individuals using, and in need of, follow-up care. Yet this need is contrasted against a shortage of oncologists and primary care providers who are able to treat this group of people. Dyer asks, how do we treat and provide adequate long-term care to people for years, possibly for the rest of their lives, in a way that is not going to compromise or strain the oncology clinics? What are the physical, social, and emotional needs of longer-term colorectal cancer “survivors,” and how does their cancer experience impact these needs?

Dyer explains that most participants with a history of colorectal cancer did see an oncology team regularly for a follow-up care. For this group, as with other groups with specific types of cancer histories, the five-year mark is a critical period where individuals get discharged from monitoring and care because the risk of recurrence is statistically very low. Yet from Dyer’s research, a large number of her participants were planning to continue to see their oncology team after they had passed the five-year mark. Most had no formal “survivorship” care plan, and in general, there was not an understanding of what future care would entail.

Many individuals with a history of colorectal cancer continue to see their oncology team because of the intense bond and emotional connection they have developed. Going through a serious life-threatening experience created an attachment and deep sense of friendship. Dyer discusses that the oncology team fills a role of social friendship and support during the cancer experience when many other relationships may change. For Dyer’s participants, the oncology team has seen them in their “worst moments” and guided them through this demanding treatment. This type of connection and support is difficult to abandon. One woman said, “I need my security blanket, and yeah, I guess that’s what Dr. L [her oncologist] is.” This sense of being cared for and understood will be greatly missed. Any kind of care planning needs to take that strength of bond and trust into account.

Ambiguity surrounding cancer follow-up care is also an important dimension of Dyer’s work. Many participants report difficulty several years post-treatment when symptoms or health problems manifest in uncertain ways. Participants report difficulties distinguishing between normal aging processes, potential non-cancer related problems such as diabetes, or potential cancer-related, or cancer treatment-related, effects. Dyer uses fatigue as an example. Many participants spoke about being considerably more fatigued than they usually were. While this fatigue could be part of a normal aging process, it could also signal a variety of diseases or indicate the arrival of a cancer recurrence. Ambiguous symptoms such as fatigue lead to a high stakes, complex decision-making process.

People experiencing these types of indistinct symptoms often express an uncertainty about who they should contact with questions and when. Participants frequently did not want to “bother” their oncologist or be perceived as overreacting. Self-diagnosis and self-assessments of the level of seriousness of these symptoms were often the responses.


Marlaine Gray (GHC) – Shouldn’t We Be Listening?: Using Twitter for Recruitment, Patient Engagement, and Data Collection in a Study about How Young Adults with End Stage Cancer Make Medical Decisions

Gray begins by discussing research methodological complications when researching young people with metastatic cancer who are geographically spread all across the United States. It can be difficult to find and access this understudied population. Gray also discusses the sensitive nature of the topic is often compounded by time constraints; asking a patient for an hour of their time as part of an interview is difficult when that individual may not have a lot of time left.

Using an already active Twitter community, Gray investigated how young adults with metastatic cancer made medical decisions and whether or not their care matched their ultimate goals. The research was called The Clare Project, named after and featuring a personal story of metastatic cancer. The intention was to understand what these patients wanted for their remaining life and quality of life and translate those goals back into the medical discourse in order to match up treatments. Most participants wanted more quality time with their family, yet they were often being advised to get surgeries. Gray explains this disjunction can be problematic since metastatic cancer patients may never return home from the hospital after these types of surgeries, or they be unable to recover completely and be unable to fully engage with their families again.

Twitter became a way to contact people who were already publically speaking about their cancer experiences. The population of young people online is very active in seeking treatment, finding other patients to connect with, and finding out what the treatments are like. While there are also blogs, threads like Reddit, Facebook groups and pages, and other online message boards, Twitter emerged as the most successful way of communicating with this population. People are online constantly to discuss their cancer experiences.

The metastatic cancer Twitter community uses hashtags such as #mayacc (metastatic adolescent and young adult cancer community), #hpm (hospice and palliative medicine), or #metsmonday, where people with metastatic cancer post about their experiences on Monday. After launching their call for recruitment on Twitter, the Clare Project (Twitter page available here) achieved 200% of their recruitment goal within 24 hours. By using established hashtags and following prominent community members, Gray was able to reach an extensive participant audience.

Adolescent and young adult cancer patients are already actively using social media, many joining Twitter after their diagnosis. Twitter becomes a means of social connection. Gray articulates people are using Twitter to discuss decisions they have to make surrounding their metastatic cancer treatments. Even though patients talk with their doctors and family members, they are using the Twitter support groups to find out what the treatment experiences are. It is these treatment narratives from fellow metastatic cancer sufferers which holds more decision-making weight. Some of these decisions are very high stakes and are based on their peer, rather than medical, advice.

Accessing the first-hand expertise of other patients is labeled as a different kind of expertise than they can get from the medical community. Additionally, for side effects, participants express that doctors can tell them what the treatment is, but their fellow patients will express what the treatment is like and how to manage it. This social support is crucial when participants often do not know anyone else with these types of cancer.

Gray also discusses a kind of “legacy activism,” where people would know they were terminal with few options in their own treatment, but they wanted to advocate for more research funding and attention to metastatic cancer. Social media became a way to engage in social activism. Even though people could not physically go to advocacy events, they could virtually participate from their bedrooms and still spread their message. Through Twitter, people can participate in research and campaigning who would otherwise be unable to do so.