Interview with Michael Galvin

Posted by nusaibasc

The next few months we’ll be highlighting authors who have published in Culture, Medicine, and Psychiatry.

Dr. Michael Galvin is a Global Psychiatry Clinical Research Fellow and in the Department of Psychiatry at Harvard University and the Department of Psychiatry at Boston University. Dr. Michael Galvin is a global health researcher and psychotherapist. His primary research interests center on mental health and the role that one’s environment, culture, and belief systems play in mental illness and treatment. In particular, his work focuses on elucidating cultural models of mental illness and exploring relationships to pathways to care, with the goal of improving cultural adaptation of mental health interventions.

What is your article “Examining the Etiology and Treatment of Mental Illness Among Vodou Priests in Northern Haiti“ about?

This article is about the way that traditional healers (ougan) conceptualize and treat mental illness in rural Northern Haiti. While the vast majority of people with mental illness seek treatment from ougan in this region – as few biomedical services exist – very little research has examined what ougan actually do when treating patients. The article also tries to understand how mental illness is viewed from the healer’s perspective, delving into the broader Vodou cosmology which remains very influential in rural parts of Haiti.

Tell us a little bit about yourself and your research interests.

My interests mostly center around mental illness and how we conceptualize it in different cultures and settings. Historically, mental illness has always been hard for people to understand, getting wrapped up in ideas of spirit and demon possession. Rarely have people thought it was something to treat like a broken leg or even a bacterial infection. This is partly because there are no biomarkers to test for it thus patients recount what they are experiencing solely via self-report. But it’s also because mental illness affects the basic ways in which people act and simply exist in the world. When our loved ones have significant behavioral changes without physical symptoms of illness or infection it can often lead us to suspect the supernatural.

What drew you to this project?

I have been working and living in Haiti on and off since 2012 and knew I wanted to focus my dissertation research in Cap-Haïtien. I found out about the Mental Health Center at Morne Pelé in 2018 and spent the entire summer of 2019 volunteering with them so we could get to know each other, for me to better understand what their work was like, and to start exploring different angles for my dissertation research which I conducted in the second half of 2020. It was during the summer of 2019 that I learned about the extent to which patients held explanatory models based in Vodou and I knew that had to become a significant part of my research there. I’m currently the director of the Mental Health Center at Morne Pelé’s new Research Laboratory so it’s very exciting to continue to collaborate together.

What was one of the most interesting findings?

One of the most interesting findings was this treatment called fiksyon that almost all the healers I interviewed used. Barely anything has been written about these concoctions so this was really one of the first times they’ve been explored. Fiksyon are different liquids – usually rum mixed with ground plants and animals – that are kept in large unmarked semi-transparent plastic bottles. There’s a lot of mystery surrounding fiksyon with many people saying they have mystical properties. It would be interesting to explore more about what is actually in them and the places where they are manufactured

What are you reading, listening to, and/or watching right now?

I’m reading a really interesting book that was written in the 1970s called Plagues and Peoples. It’s a great dive into the history of pandemics over the centuries. It’s not a hard read at all, very enjoyable and easy to understand with lots of nice anecdotes. Apparently the findings have held up really well over the last 50 years too.

If there was one takeaway or action point you hope people will get from your work, what would it be?

That religion and culture have deep impacts in the way we conceive of mental illness. That we still know relatively little about how mental illness develops, manifests, and is best treated. That the relationship between our minds and our bodies is exceedingly complex and there are often no easy solutions.

Thank you for your time!

Interview with Katarzyna Szmigiero

Posted by nusaibasc

The next few months we’ll be highlighting authors who have published in Culture, Medicine, and Psychiatry.

Katarzyna Szmigiero is a graduate of the University of Łódź, Poland. She is an Associate Professor at the Institute of Literary Studies and Linguistics of the of University of Jan Kochanowski, Poland (Branch in Piotrków Trybunalski). Her research interests concentrate on medical humanities, especially cultural representations of psychiatry and gender, and genre fiction.

What is your article ““We All Go a Little Mad Sometimes:” Representations of Insanity in the Films of Alfred Hitchcock“ about?

The article deals with the way motifs connected with psychiatry (doctors/treatment/people diagnosed with mental illness or individuals displaying disturbing behavior/attitudes to mental psychopathology) are used in the films of Alfred Hitchcock. First of all, it tries to answer the questions why the director so often presented mentally unstable characters in his works. It also looks at how Hitchcock gently questioned the assumptions about mental illnesses and its origins that were dominant in his times. Finally, it briefly mentions the legacy of Hitchcock if the cinematic portrayals of insanity are concerned.

Tell us a little bit about yourself and your research interests.

I am interested in cultural representations of madness, gender studies, and popular literature.

What drew you to this project?

I have always loved Hitchcock’s films and saw Frenzy in my early teens, as it was my dad’s favourite. It was one of the most unpleasant and, simultaneously, hilarious film I have ever seen since.

What was one of the most interesting findings?

On the surface, Hitchcock appears to be following the psychoanalytic approach, especially in his American movies. However, he always undermines the official discourse on madness, proving that we are all, sometimes, a little mad and there’s nothing wrong about it.

What are you reading, listening to, and/or watching right now?

I am currently an avid reader of the retellings of the Medusa myth (as well as other chick lit fantasy books about antiquity).

Watch Hitchcock! Old films may seem dated, especially if you are not used to them. But his dialogues, designs, cast is often genius.

Thank you for your time!

Interview with Clare Killikelly

Posted by nusaibasc

The next few months we’ll be highlighting authors who have published in Culture, Medicine, and Psychiatry.

Dr. Clare Killikelly is a Post-Doctoral Research Fellow in the Department of Psychiatry, University of British Columbia, and Department of Psychology, University of Zurich. Dr. Kilikelly’s research group examines the clinical utility and global applicability of the new Prolonged Grief Disorder. Her research seeks to better understand the nature of suffering and distress in different communities to develop accessible and culturally informed assessments and interventions.

What is your article “The New ICD-11 Prolonged Grief Disorder Guidelines in Japan: Findings and Implications from Key Informant Interviews” about?

Symptoms of mental disorder, including grief reactions, are found to differ across cultures. There are several examples where misdiagnosis of mental disorders, treatment gaps, and reduced help seeking occurs when culturally sensitive assessments are lacking. The identification of culturally unique symptoms of grief can improve the validity of mental health assessment.

We are the first to explore PGD symptoms in Japan from the perspective of frontline health care workers. We conducted in depth key informant interviews with cultural brokers (e.g. individuals who are part of the health care system but also have lived experience of the cultural group).

We had two main aims: first to explore experiences of grief to define both normal and abnormal reactions. Secondly, we assessed the acceptability of the ICD-11 guidelines to identify areas where cultural information is lacking. This would provide a unique viewpoint that is often overlooked in larger qualitative studies.

Tell us a little bit about yourself and your research interests.

I am interested in the role of culture in the presentation and treatment of mental health disorders. I believe that there may be cultural concepts that when unlocked can provide a key to better therapeutic outcomes.

After completing a PhD in Cognitive Neuroscience at the University of Cambridge, UK, I became interested in the core cognitive processes underlying psychopathology and the development of targeted psychotherapeutic interventions. I completed a Doctorate in Clinical Psychology at the Institute of Psychiatry, Psychology and Neuroscience, UK and explored the use of innovative mobile technologies to improve the acceptability and efficacy of therapeutic interventions for people with psychosis. Working as a psychologist with refugees in South London I became interested in the different cultural experiences and presentations of distress.

Currently, I have been awarded a Swiss National Science Foundation (SNSF) Post-Doc Mobility grant to work at the University of British Columbia to examine the relationship between grief, indicators of mental health and post migration living difficulties in refugees in Canada in comparison with Swiss, Dutch and German cultural contexts.

If you are interested in learning more about this research project, or possibly participating please check out the website.

What drew you to this project?

Prolonged grief disorder is the only mental disorder where people are expected to suffer. However, the intensity and duration of this suffering is bound by different cultural norms. For example, in German speaking countries it is common to observe a Trauerjahr (year of mourning) whereas in Syria there are 40 days of mourning. The new ICD-11 definition of PGD states that individuals must experience intense and prolonged symptoms of grief for over 6 months. Although there is robust research evidence that supports this time criteria in the Global North (e.g. North America and Europe), the current definition of PGD may be missing key symptom items and features that are more representative in different cultures.

Ultimately, we would like to develop a catalogue of culture concepts of distress (CCD) that could be accessed worldwide to help clinicians more accurately assess and diagnose PGD in different cultural groups.

What was one of the most interesting findings?

Part of the analysis focused on establishing common grief symptoms for disordered grief in Japanese bereaved. Participants described a range of emotional responses that are associated with both normal and abnormal grief responses. One unique emotional response was identified related to sadness: The sense of loss was described using a metaphor for distress ‘as a hole opening up inside the kokoro (heart).’

The in-depth qualitative analysis provided insight for clinical application, for example, due to

prominent values of emotional control, stigma towards mental illness, or lack of somatic items in the assessment measure, PGD may be underestimated in Japanese culture with the current ICD-11 PGD guidelines.

What are you reading, listening to, and/or watching right now?

I am currently re-reading ‘Snow Falling on Cedars’ by David Guterson which takes place on the islands neighbouring Vancouver and UBC. It is an excellent book but a harrowing story about the Japanese internment camps during World War II. This is also an often overlooked part of Canadian history.

If there was one takeaway or action point you hope people will get from your work, what would it be?

We were able to identify new symptoms that are very relevant for the Japanese context that are currently missing from the ICD-11 PGD definition. For example, somatic symptoms are robustly endorsed in the Japanese context, however, these are largely missing from the PGD ICD-11 definition. On the other hand, yearning and longing for the deceased (a core symptom of PGD ICD-11) is considered a normal and encouraged process, related to the emphasis on continuous bonds. Clinicians will need to consider these possible cultural differences before diagnosing PGD in the Japanese context. Considering the deeper beliefs and values of a culture and how this may impact on the assessment of grief is of great importance.

Thank you for your time!

Other places to connect:
Website
International Counseling
LinkedIn

Interview with Sarah Rubin and Joselyn Hines

Posted by nusaibasc

The next few months we’ll be highlighting authors who have published in Culture, Medicine, and Psychiatry.

Sarah Rubin is an Associate Professor at the Ohio University Heritage College of Osteopathic Medicine at the Cleveland campus. She is a medical anthropologist who studies motherhood in the US and South Africa. She’s an advocate for health equity and reproductive justice. She lives in rural northeast Ohio with her family.

Joselyn Hines is a fourth-year medical student at the Ohio University Heritage College of Osteopathic Medicine at the Cleveland campus and psychiatry residency applicant. She has held many leadership positions within her medical school and local community. She is an active advocate and leader for underrepresented minority medical students and marginalized patient populations. She is passionate about destigmatizing mental illnesses and connecting the community to proper psychiatric care.

What is your article “As Long as I Got a Breath in My Body’’: Risk and Resistance in Black Maternal Embodiments” about?

This article explores the everyday experiences of Black mothers in Cleveland, OH as they navigate pregnancy and postpartum in the context of the racially disparate risk of infant death due to structural racism. These mothers articulated awareness of ways that racism causes them stress as they strive to have a healthy pregnancy and birth and raise their children well. We describe an embodied orientation toward motherhood that we call “betterment” where women attempt to overcome the disadvantages and oppressions of structural racism by centering their children, reconsidering and reconfiguring the social support they need to raise them, and by focusing on the future.

Tell us a little bit about yourself and your research interests.

Rubin: I’ve always been fascinated by reproduction and motherhood and understanding “what it’s like” to mother in different contexts and circumstances. I work with mothers in South Africa as well as the US. Ethnography is my favorite way of engaging in research, but I also enjoy the breadth and multidimensionality of interdisciplinary collaborations. My favorite way to do research, though, is by engaging and mentoring students.

Hines: I am passionate about research on chronic stress in Black woman and its impact on the maternal and infant mortality health disparity in Cleveland, Ohio. I am interested in women’s mental health, reproductive psychiatry and child and adolescent psychiatry.

What drew you to this project?

Rubin: When I learned about the great racial disparity in infant mortality around our campus in Cleveland, OH and the role of chronic stress in creating and maintaining that disparity, I wondered what it looked like and felt like to mother under those conditions. We started with that phenomenological question, and it led us to an understanding of how structural racism is experienced and resisted by Black mothers.

Hines: Black women’s voices are often silenced and objectified in medicine. This project amplifies the voices and stories of Black women and sheds light on the struggles and obstacles that black women face and overcome to successfully parent.

What was one of the most interesting findings?

The Black mothers in our study demonstrate a love and commitment to their children that defy pathologizing discourses like “Welfare Queen;” but they also disrupt the positive trope of the “Superstrong Black mother,” which renders invisible the hardship and grief of living and mothering in a racist society. Our findings forge a middle path by showing how Black mothers’ bodies are shaped by the chronic stressors of structural racism but are also a source of resistance, especially in service to their children.

What are you reading, listening to, and/or watching right now?

Rubin: I’m reading Birthing Black Mothers by Jennifer C Nash. It’s a fascinating analysis of “Black motherhood” as a political symbol. It’s prompting me to reconsider my own analysis of Black motherhood, and also my positionality as a scholar. I’m also watching Season 10 of the Great British Baking Show. It’s a hug, nap, and cup of tea all rolled into one flaky pie crust. A working mother’s salve.

Hines: The Deepest Well: Healing the Long-Term Effects of Childhood Adversity by Dr. Nadine Burke Harris

If there was one takeaway or action point you hope people will get from your work, what would it be?

Rubin: Listen to Black Mothers!

Hines: This project shows how social determinants of health are lived and embodied by vulnerable populations. Readers can use this information to better understand their perspective, provide holistic quality care, and to better advocate for systemic changes in society that can ultimately provide better health outcomes for and save the lives of Black mothers and babies.

Thank you for your time!

Other ways to connect:
Twitter: Sarah Rubin | Joselyn Hines
LinkedIn: Sarah Rubin
Other applicable website: Sarah Rubin

AAA 2017 Session Highlight: Jonathan Metzl, “Negroes With Guns: Mental Illness, Gun Violence, and the Racial Politics of Firearms”

Posted by sonya.petrakovitz

This week on the blog we are highlighting an oral presentation given at this year’s annual American Anthropological Association conference in Washington D.C. by Jonathan Metzl entitled Negroes With Guns: Mental Illness, Gun Violence, and the Racial Politics of Firearms. The session was named “Critical Inquiries: Violence, Trauma, and the Right to Health” on Thursday, November 30, 2017. Metzl combined historiographical and ethnographic analysis to explore the connections between gun violence, mental illness, and shifting anxieties about race in the United States. Metzl discussed how decisions about which crimes American culture diagnoses as “crazy,” and which crimes it deems as “sane,” are driven as much by the politics and anxieties of particular cultural moments as by the innate neurobiologies of particular assailants. The presentation concluded by describing how racialized questions of whether “the insane” should be allowed to bear arms become the only publicly permissible way to talk about questions of gun control while other narratives, such as the mass psychology of needing so many guns in the first place or the anxieties created by being surrounded by them, remain silenced.

Metzl began his presentation by stating that after the recent and tragic Las Vegas mass shooting, he gave 58 interviews in only two days on “the insane politics of mass shootings.” The two main questions that get asked after each mass shooting are: “Is mental illness the cause of mass shootings?” and, “Will treating mental illness stop gun crime?” Both conservative and liberal media analyses include these types of questions, whether or not they ultimately claim mental illness as the answer (for example: NPR’s On Point, Politico, and Fox News).

Yet Metzl asked, why do these mental illness questions follow after mass shootings? “Aren’t these questions starting to be ridiculous?” Metzl asked, after referring to a study published in the journal Aggression and Violent Behavior which found some mass murderers and serial killers have something in common: autism and head injury. Yet this study was criticized for fueling judgments about an entire section of society and further contributing to the mental illness-gun violence debate.

In some ways, linking mass shootings and mental illness makes sense. Mass shootings are beyond the realm of “sanity” and understanding. Metzl stated that constructing a binary of sane vs. insane, good vs. evil, may be a means of processing grief and uncertainty. Further, many of the mass shooting perpetrators in the last decades have displayed some kind of mental illness symptomatology before their crimes. Mother Jones published an investigation of US mass shootings from 1982-2017 including information on the shooter’s race, gender, prior signs of mental health issues, mental health details, and whether or not the weapons were obtained legally. But this information cannot lead to a causal argument.

These types of questions have ideological and political roots, and focusing exclusively on issues of mental health force other concerns out of the debate. At a National Rifle Association (NRA) press conference in December 2012, chief executive Wayne LaPierre suggested having “an active national database for the mentally ill” would help prevent gun violence. In 2013, Ann Coulter wrote a Sound Off on Fox Nation entitled “Guns Don’t Kill People, The Mentally Ill Do.” After the 2015 Planned Parenthood shooting in Colorado Springs, Paul Ryan called for a need to look at fixing our nation’s mental illness health system, not it’s gun legislation. Most recently, following news of the mass shooting of parishioners at a Sunday service at a small Baptist church in Texas, Trump proclaimed mental health was the overarching issue, not gun control, even before complete details of the shooter were known.

Following this overview of political ideologies shaping the mental illness conversation, Metzl then asks, “What can reasonably minded people do to push back?”

Metzl then presented five talking points about important ways to push back against the mental-illness-and-mass-shooting account while still remaining respectful of mental illness, treatments, and medications. These talking points discuss why this association is problematic.

1. “It’s sample bias – and dangerously so…”: Mass shootings come to stand for all shootings. But mass shootings are not the only time we need to talk about gun violence, Metzl stated. When we talk about mass shootings, we are not talking about policy implications for everyday gun death. Every day gun violence, gun proliferation, the ability to buy guns through loop holes should all be part of the national conversation. Worryingly, Metzl states, the situation is about to get much worse. Today (Wednesday, December 6, 2017) the House will vote on a “concealed carry reciprocity” bill, creating a national blanket right to carry a concealed weapon across state lines. For Metzl, the point overall is that the mental illness narrative distracts from daily gun violence and the political negotiations behind gun regulations.

2. “It’s stigmatizing and misrepresentative…”: Fewer crimes involve people with mental illness. People with sanity are much more dangerous, Metzl stated. People diagnosed with a mental illness are less likely to shot other people, therefore we should really be restricting guns from the sane. Further, Metzl stated that statistically there is no predictive value in using a mental illness diagnosis for gun crime. Individuals with mental illness are more likely to be shot by police than to do the shooting themselves.

3. “It constructs false psychiatric expertise…”: Psychiatrists are being told they should be able to predict which of their patients may commit violent act. Yet the pool of people they see are not a high risk population. Metzl stated the public culture of fear may lead psychiatrists to feel culpable for the actions of their patients, over-report their concerns, and complicates the doctor-patient confidentiality bond. In the weeks before the Aurora, Colorado movie theater shooting, shooter James Holmes was seeing a psychiatrist specializing in schizophrenia. In June 2012 The Brian Lehrer Show discussed how psychiatrists determine red flags with their patients and when behavior is concerning enough to warrant further action with Columbia University Director of Law, Ethics, and Psychiatry Paul Appelbaum.

4. “It detracts from awareness of true predictive factors for everyday gun violence…”: The mental illness narrative also detracts from other risk factors for everyday gun violence and mass shootings. Substance use or abuse, past history of violence, lack of gun training, social networks, and access to firearms are all important predictive factors for gun violence.

5. “It’s racist…”: Last but certainly not least, the construction of a mentally ill, dangerous, white, male, gun-owning “loner” is a political choice. The intentional presentation of the individual-isolated-from-society is not supposed to be representative of white culture. Yet in the 1960s, the FBI openly blamed “crazy” black “culture” for the rise of public black activist groups. In debates leading up to the Gun Control Act of 1968, the U.S. Government and mainstream US culture proclaimed links between African American political protest, guns, and mental illness in ways that intensified fears about black activist groups. For example, FBI profilers diagnosed Malcolm X with “pre-psychotic paranoid schizophrenia” and with membership in the “Muslim Cult of Islam” while highlighting his militancy and his “plots” to overthrow the government. The FBI also hung “Armed and Dangerous” posters throughout the southern states warning citizens about Robert Williams, the controversial head of the Monroe, North Carolina chapter of the NAACP author of a manifesto, Negroes With Guns, that advocated gun rights for African Americans. According to the posters, “Williams allegedly has possession of a large quantity of firearms, including a .45 caliber pistol… He has previously been diagnosed as schizophrenic and has advocated and threatened violence.”

These historical narratives were linked to black culture, not black individuals. Issues of race and insanity produced black male bodies coded as insane. This association fostered fears that helped mobilize significant public and political sentiment for gun control. Yet there are very different politics of the present day. Metzl states were are in a time when white shooters with mental illness beget reaffirmations of gun rights and groups that advocate anti-government platforms and support broadening of gun rights, such as the Tea Party, take seats in Congress rather than being subjected to police scrutiny. For much of our country’s history, guns marked whiteness.

Metzl concluded his presentation with a discussion of a helplessness narrative. There is a kind of inaction about calling mass shootings and gun violence part of mental illness. Since we can not do anything about whether or not individuals have mental illness, it allows us to ignore the other issues and risk factors. This further constructs a kind of persons, not a composition of something larger and more systemic. The learned helplessness surrounding gun crime in the US makes hard rhetorical work to not look at whiteness and mass culture as part of the problem.

Jonathan Metzl, MD, PhD is the Frederick B. Rentschler II Professor of Sociology and Medicine, Health, and Society, Director for the Center for Medicine, Health, and Society, and Professor of Psychiatry at Vanderbilt University. He is also the Research Director of the Safe Tennessee Project, a non-partisan, volunteer-based organization that is concerned with gun-related injuries and fatalities in the United States and in the state of Tennessee. His areas of expertise include mental illness and gun violence with a particular focus on gender and race.

Learn more about Jonathan Metzl at his website, available here.

Message from the AAA 2017 Annual Meeting

Posted by sonya.petrakovitz

The Culture, Medicine & Psychiatry editorial team sends our greetings this week from the American Anthropological Association 2017 Annual Meeting in Washington, DC. This year’s 166^th Annual Meeting will be held from November 29^th through December 3^rd, with session listings and other helpful information available here. The theme for this year’s meeting is Anthropology Matters!. We hope all of our readers attending the conference have safe travels to– and many productive conversations at– this year’s meeting! Next week we will feature highlights from one of the many excellent paper sessions.

As a reminder, we continue to accept guest blog submissions on topics spanning cultural, medical, and psychological anthropology and related disciplines in the social sciences and medical humanities.

Consider submitting an abbreviated version of your AAA conference presentation as a guest blog, or write a commentary on one of the keynote speeches at the event. We look forward to sharing the work and research of our readers with our colleagues on the blog! If you are interested in submitting a guest blog, please contact our social media editors, Sonya Petrakovitz at smp152@case.edu or Monica Windholtz at mmw106@case.edu for details.

Best wishes,

The CMP Editorial Team

Upcoming AAA 2017 Annual Meeting: Highlights of Scheduled Sessions

Posted by sonya.petrakovitz

This week on the blog we are highlighting two scheduled sessions at the upcoming American Anthropological Association 2017 Annual Meeting in Washington, DC from November 29^th through December 3^rd. Anthropology Matters!, the theme for the 116^th AAA Annual Meeting, is a call to unite the field of anthropology, to embrace difficulty, and to promote the persistent relevance of what anthropology is and does. As stated on the Annual Meeting website, available here, anthropology is best at describing the past, exploring the present, predicting the future, and navigating the processes of being and becoming human.

The first scheduled session highlighted is entitled Biomedical Subjectivities and Imagined Futures (2-0145) and features oral presentations by Kimberly Dukes, Markus Idvall, Leslie Carlin, Dana Ketcher, and Rebecca Grunzke. The second scheduled session is an Executive Roundtable session entitled Do Black and Brown Lives Matter to Anthropology?: Race, Bodies, and Context. This roundtable features John Jackson, Norma Mendoza-Denton, Aimee Cox, Jonathan Rosa, and Vanessa Diaz.

Biomedical Subjectivities and Imagined Futures (2-0145)

Wednesday, November 29^th – 12:00-1:45pm in Marriott Ballroom Salon 1

– Oral Presentation Session –

Kimberly Dukes (Co-Authored with Aaron Seaman) – University of Iowa

Title: “Let’s Take a Peek”: Looking At, For, and Away From Future Cancers

Abstract: This paper considers what it means to be living, for a time, “between” illnesses, a particular moment of what Lochlann Jain has called “living in prognosis.” How—ostensibly from a place of “health,” as some would define it—is one’s reckoning of the future shaped by prior experiences? Are there ways of imagining an embodied future other than the overdetermined eventuality of recurrence or other bodily breakdown? This paper contemplates how people who have been successfully treated for head and neck cancer envision themselves and their futures as they consider whether to undergo screening for lung cancer. Drawing on semi-structured, in-depth interviews with patients and providers at a Midwestern US academic tertiary care center, we explore the tension between some people’s reliance on surveillance as an active health practice and others’ comfort with uncertainty. As patients situate themselves in the space between cure and potential recurrence, they sometimes resist biomedical understandings of evidence, harms, and risks. As participants explore the costs—and even the perceived gifts—of cancer in their lives, they draw on other sorts of evidence, including fun lives and prices paid; personal and social narratives of cancer as something to be surveilled, cured, or merely interrupted; and the value of different kinds of knowing. Working in this context, then, the paper contributes to anthropological conversations about the ways that people make sense of the precarity of life, especially within a US biomedical landscape increasingly contoured by anticipatory conceptualizations of chronicity and risk.

Markus Idvall – Lund University

Title: Synchronizing Oneself with Science: How Individuals with Parkinson’s Disease Go Along with Clinical Trials

Abstract: Sweden has a long tradition when it comes to biomedical research on Parkinson’s disease. For example in the 1980s the first neuron cell transplantation to a Parkinson patient in the world took place in Sweden. Today Swedish Parkinson scientists, in collaboration with researchers in other countries, continue the search for a cure for Parkinson’s disease within several research fields. In the last years I have followed a biomedical research project in Sweden focused on realizing clinical trials with Parkinson patients within the field of cell transplantation. In my work I have conducted interviews with patients, researchers and medical staff as well as observations in hospital environments and in contacts with patient’s organizations.
My aim with this presentation is to explore what constitutes a clinical trial from the viewpoint of the patients. How does this biomedical research matter for trial-participating as well non-participating patients? How does one as patient follow and understand the clinical trials? How does one move along in relation to what one, on the basis of one’s degenerative illness, perceives as the progress of science? Individuals with Parkinson are, in this sense, temporal beings in whatever they do or calculate in relation to science. Taking part in clinical trials is viewed as a way of synchronizing one’s self with what one experiences as the tempo of practiced science. In my presentation I will explore different concepts for how a form of time sensitivity can be studied among patients.

Leslie Carlin (Session Chair, Co-Authored with Sonya Allin, Sarah Munce, Christine Ibrahim, Susan Jaglal) – University of Toronto

Title: Inside the BMD Black Box: Investigating the Performance and Production of Bone Material Density Tests

Abstract: Most research into the social context of bone mineral density (BMD) testing has focused on its consumers, mainly “older” women, and the effect of such tests on perceptions of aging bodies, in particular on the frightening risk of hip or other fragility fracture. BMD tests, which detect thinning (osteoporotic) bone, provide information on an invisible, painless, and otherwise unknowable aspect of bone health. From a health policy perspective, the cost of evaluating individuals’ fracture risk through such testing must be measured against both the expense of treating fracture patients and the trauma of injury. Between patient and policy, and very much under-investigated, is the material and social production of the BMD test itself, a procedure that often takes place in small (box-like) rooms using carefully calibrated machines operated by X-ray technologists with specialized training in BMD. In Ontario, Canada, the Ontario Health Insurance Program (OHIP) is a single-payer government-funded system that pays for BMD tests for individuals who meet OHIP’s eligibility criteria; these are based on a referring physician’s assignment of a “risk category.” In order to ensure reimbursement, the scanning facility’s intake staff must align the request with the OHIP risk designations, a process that is subject to judgement and error. “It’s always a hardship,” says one technologist. Using data from interviews with personnel at twelve scanning facilities in Ontario, we consider BMD testing as the creation of a ‘desirable’ artifact—the scan itself and the report created by the ‘reading physician’—in order to explore how a process, like a thing, can have a fluid and dynamic social life.

Dana Ketcher – University of South Florida

Title: Value of Genetic Testing and Counseling for Cancer Syndromes: Perspectives of Women at Genetic High Risk

Abstract: Genetic counselors might contend that the knowledge derived from the results of genetic testing (GT) for hereditary cancer syndromes is the primary characteristic that makes testing valuable. The knowledge and information gained from GT results inform cancer screening recommendations and potential prophylactic surgeries, as well as who (if anyone) in the patient’s family should also undergo testing. However, less is known about the value of GT as determined through the experiences and perceptions of patients – what I call the ‘folk knowledge’ of GT. This paper will discuss this ‘folk knowledge’ and the value assigned to GT and genetic counseling by women determined to be at high genetic risk for hereditary breast and ovarian cancer. While biomedicine places a premium on technology, how is that technology used and/or perceived by women who are exposed to it? Ethnographic research with women who have undergone testing, and also those who have refused, helps illustrate the ways in which women determine if, and what, kind of value GT has in their perspective.

Rebecca Grunzke – Mercer University

Title: Is There a Doctor in the Mouse? Proposing a Cyberethnography of Online Diagnosers

Abstract: In 2008, Microsoft conducted a study of Internet users’ experiences with web searches concerning medical concerns and self-diagnosis. The result was the first systematic study of cyberchondria, defined by researchers Ryen White and Eric Horvitz as the “unfounded escalation of concerns about common symptomatology, based on the review of search results and literature on the Web.” Researchers from the Pew Research Center’s Internet & American Life Project reported in 2013 that 35 percent of U.S. adults say “they have gone online specifically to try to figure out what medical condition they or someone else might have,” referring to people who search for such medical information on the internet as “online diagnosers” (Fox and Duggan 2013). According to the Pew study, a total of 80 percent of Internet users, or about 93 million Americans, have searched for a health-related topic online, indicating that searching for health or medical information is currently one of the most popular online activities (Weaver 2013). This finding also provides significant support for both increased spending online by the health care industry to reach its consumers and the prediction by technology firm Jupiter Research that “health care companies will spend $1 billion online within the next five years” (Weaver 2013). With an estimated 24 million U.S. residents poised to lose health care coverage by 2026 under the current iteration of the American Health Care Act (Congressional Budget Office 2017), these numbers are likely to increase, much to the chagrin of some medical professionals responding to the trend of online diagnosis, who conclude that many people prefer Google over their doctors for medical advice (Samadi 2016). While attempting to self-diagnose at home and making decisions whether or not to seek a clinicians help are not new, websites giving medical advice are a recent edition to a household’s information resources (Fox and Duggan 2013). The Pew study found that women, younger people, white adults, those from households earning $75,000 or more, and those with a college degree or advanced degrees have a higher likelihood than their counterparts to go online to figure out a possible diagnosis (Fox and Duggan 2013). This study seeks to enhance the demographic and cultural profiles of online diagnosers using the tools of cognitive anthropology and social network analysis to compose a cyberethnography of this growing virtual community. The study’s theoretical orientation will emphasize the interplay between consensus theory and confirmation bias (the tendency for people to confirm what they already believe to be true, even in the face of evidence to the contrary), with particular attention to how each potentially informs the development of cyberchondria.

Do Black and Brown Lives Matter to Anthropology?: Race, Bodies, and Context (3-1225)

Thursday, November 30 – 4:15-6:00pm in Omni, Hampton

– Executive Roundtable Session –

John Jackson (Chair/Roundtable Introducer) – University of Pennsylvania

Norma Mendoza-Denton – University of California, Los Angeles

Aimee Cox – Yale University

Jonathan Rosa – Stanford University

Vanessa Diaz (Organizer) – Dartmouth College

In line with the 2017 AAA theme, “Anthropology matters!,” which invokes #BlackLivesMatter and the movements of other racialized and stigmatized groups, this roundtable offers a space for anthropologists to respond to how anthropology interacts with, strengthens, and/or stifles the movement(s) of people of color and other marginalized populations. More specifically, this roundtable will center around the question anthropologist John Jackson posed in his comments for the roundtable “Ferguson and Beyond” at the AAA 2015 annual meeting: Do Black lives matter to anthropology?

In the time since this provocative question was posed, the lives of Black folks, and people of color more broadly, have remained under attack by U.S. political, legal, and criminal justice systems. As this year’s call for papers asks us to bring panels to the table “that involve investigation, translation, influence, and action” to various parties, including “as an association (AAA and all the sections),” this roundtable offers the opportunity to address if and how anthropology has addressed Jackson’s question. This roundtable will explore various anthropological perspectives on race, the body, and the reality of white supremacy and racial hierarchies that are alive and well within anthropology, academia, and the U.S. on a national level.

By exploring such topics as racialized and gendered labor in the academy, racial profiling in various social realms, raciolinguistic politics, and how popular U.S. culture relates to and perpetuates racial hierarchies, we come together as anthropologists of color to insist that issues of race and racialization be at the forefront of contemporary anthropological inquiry. The panelists will identify the ways in which their research addresses contemporary struggles with inequality, discrimination, and other topics that should matter to anthropology, while at the same time offering examples of the ways in which anthropology as a discipline and AAA as an organization (and its members) can show that these struggles, and the discipline’s own relationship to colonialism and white supremacy do, in fact, matter to anthropology.

Article Highlight: Vol. 41, Issue 3, “Don’t Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum”

Posted by neelymyers

This week on the blog we are highlighting an article from our most recent edition, Volume 41, Issue 3, by Mihan Lee entitled Don’t Give Up! A Cyber-ethnography and Discourse Analysis of an Online Infertility Patient Forum. The study explores the patients’ access to psychological support when dealing with a diagnosis of infertility. This is done through patient interviews and a cyber-ethnography of an online forum hosted by RESOLVE: The National Infertility Association. Lee explores the themes common across the different forum threads and the interviews to better understand the support systems of patients. Several themes emerge, such as the difficulty in obtaining treatment for many women because of resource burden and the stress of finding an option that fits within their parameters. The author proposes that not having the resources to access treatment silences women and denies them the support they came to the forum in search of.

Patients experience of their illness during and after treatment can be impacted by the social support in their environment. Patients in the contemporary age build social support networks on the Internet, turning to it for health information and access to resources to make decisions. Infertility patients can receive both the privacy and anonymity they often desire when using online resources for support. Those who are infertile may experience stigma for their condition or shame at not being the same as others who are fertile.

The author calls the main narrative of American infertility the ‘persistent patient’. This narrative is defined by a woman who wants a child and expresses her desire for through material resources. This requires that the woman have an education and access to financial resources so that she can access the resources available to medically treat her infertility. This creates a subset of women among the rest who are able to fit the ‘persistent patient’ narrative.

For the study, the author identified women to interview through posts on the sites infertility advocacy organizations. The fifty-five women interviewed were given a demographics questionnaire and then interviewed to find their patient narratives and discover both personal and professional views on infertility. Lee also conducted a “cyber-ethnography,” a critical analysis of posts in an online patient community. This was used to compare the effects of the Internet on the social support of the women. These were followed up with more refined interviews of patients.

For many women who experience infertility treatment, there is an extreme emotional burden. There is also a pressure experienced from the stigmatization of the condition. While infertility is a condition that affects seven million women, many women still feel like the condition is abnormal. Because of this, women keep their condition and experience private.

Within the forums, there was a running theme that friends and family did not understand the stress and struggle of infertility, which further stressed the women. The posters in the online community then became a support network for the women who were feeling an external lack of support. They were able to understand other women’s pain because it was similar to their own. However, this is offset by the validation of only certain narratives, especially through an assumed access to the resources to pursue treatment.

One type of thread, the “roll call” served as “an opportunity for all patients starting a certain type of treatment .. to connect with one another”. These roll calls allowed women of different experiences to connect with those who could offer them support through their parallel treatment journeys.

Interestingly, Lee notes that it seems as if those who most often frequent the boards are those who have had several treatment cycles. This juxtaposes the lack of discussion about the financial, time, and other resources necessary to pursue multiple treatments. Without these resources, some women cannot pursue the infertility treatments they would like. Data suggests that despite the lack of discussion, this is a prevalent problem. Most states do not require that insurance option cover infertility treatment and only 20% of employers cover ARTs.

The financial burden on women seeking treatment that was seen in the online forums was also reflected in the in-depth interviews as well. Some of the primary barriers to using ARTs was the overwhelming price. To be able to pursue these treatments, women must have type of disposable income that can go towards it. Lee suggests that the lower-income and uninsured women may either not be vocal or silenced by the culture of the forum groups. In the otherwise vocal community, posts about stopping treatment because of financial strain often went unanswered. And when there were responses, they often ignored the real constraints of financial burden.

When women bring up their concerns, the dominant narrative of the ‘persistent patient’ raises its voice louder than any of the other posters within the group. This adds further strain to the women who are worried about their financial experiences of infertility because the place where they have found solace rejects them. A counter-discourse emerges as women discuss the ways in which they have learned to cope with having a childfree life. Lee suggests that the forum should broaden its reach to offer for support as women adjust to their decision to stop treatment or inability to continue treatment.

Lee concludes that the role of the ‘persistent patient’ is one that is only available to a privileged demographic and that the socioeconomic factors that affect accessibility to resources also affects the ability of some mothers to have children. The condition of infertility is thus not experienced as a single thread and the nuances of different women’s backgrounds should be considered when hearing or researching their narrative.

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Book Release: “The Recovery Revolution: The Battle Over Addition Treatment in the United States”

Posted by sonya.petrakovitz

This week on the blog we are highlighting a new book by Claire Clark from the Columbia University Press entitled The Recovery Revolution: The Battle Over Addiction Treatment in the United States (2017). As the opioid crisis in the United States is continuing to make headlines, Clare traces the history of addition treatment and embeds developments in the social, political, and cultural moments from which they arose.

via Columbia University Press website

“In the 1960s, as illegal drug use grew from a fringe issue to a pervasive public concern, a new industry arose to treat the addiction epidemic. Over the next five decades, the industry’s leaders promised to rehabilitate the casualties of the drug culture even as incarceration rates for drug-related offenses climbed. In this history of addiction treatment, Claire D. Clark traces the political shift from the radical communitarianism of the 1960s to the conservatism of the Reagan era, uncovering the forgotten origins of today’s recovery movement.

Based on extensive interviews with drug-rehabilitation professionals and archival research, The Recovery Revolution locates the history of treatment activists’ influence on the development of American drug policy. Synanon, a controversial drug-treatment program launched in California in 1958, emphasized a community-based approach to rehabilitation. Its associates helped develop the therapeutic community (TC) model, which encouraged peer confrontation as a path to recovery. As TC treatment pioneers made mutual aid profitable, the model attracted powerful supporters and spread rapidly throughout the country. The TC approach was supported as part of the Nixon administration’s “law-and-order” policies, favored in the Reagan administration’s antidrug campaigns, and remained relevant amid the turbulent drug policies of the late twentieth and early twenty-first centuries. While many contemporary critics characterize American drug policy as simply the expression of moralizing conservatism or a mask for racial oppression, Clark recounts the complicated legacy of the “ex-addict” activists who turned drug treatment into both a product and a political symbol that promoted the impossible dream of a drug-free America.”

Claire Clark is an Assistant Professor of Behavioral Science at the University of Kentucky. She is secondarily appointed in the Department of History and associated with the Program for Bioethics. Clark further directs a National Endowment for the Humanities Summer Institute on Addition in American History. She graduated from Vassar College and was dual trained as an historian of medicine (PhD) and behavioral scientist (MPH) at Emory University.

For more information, visit the Columbia University Press website, available here.

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

Posted by sonya.petrakovitz

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.