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Contents - JLME - 2017 Volume 45: 4
Full Journal
  1. Complete Journal Download
Table of Contents
  1. Table of Contents
Letter From The Editor
  1. Letter From The Editor
Introduction
  1. Introduction: On Stigma & Health
Symposium Articles
  1. Stigmatizing the Unhealthy
  2. Law, Stigma, and Meaning: Implications for Obesity and HIV Prevention
  3. Everyday Indignities: Using the Microaggressions Framework to Understand Weight Stigma
  4. Borderline: The Ethics of Fat Stigma in Public Health
  5. The Informal Norms of HIV Prevention: The Emergence and Erosion of the Condom Code
  6. Prevention & Conservation: Historicizing the Stigma of Hearing Loss, 1910-1940
  7. Returning Home: Incarceration, Reentry, Stigma and the Perpetuation of Racial and Socioeconomic Health Inequity
  8. Stigma and the Structure of Title IX Compliance
  9. Shaming Vaccine Refusal
  10. Treating the "Illness" of Cherubism and Craniofacial Fibrous Dysplasia: Addressing the Stigma of Craniofacial Difference
  11. A New Framework for Evaluating the Potential for Drug Law to Produce Stigma: Insights from an Australian Study
  12. The Epidemic as Stigma: The Bioethics of Opioids
Independent Articles
  1. My Gametes, My Right? The Politics of Involving Donors' Partners in Egg and Sperm Donation
  2. Voluntarily Stopping Eating and Drinking: A Normative Comparison with Refusing Lifesaving Treatment and Advance Directives
  3. The Ethical Course Is To Recommend Infant Male Circumcision - Arguments Disparaging American Academy of Pediatrics Affirmative Policy Do Not Withstand Scrutiny
  4. Linking the Governance of Research Consortia to Global Health Justice: A Case Study of Future Health Systems
  5. Public Health and the Law: Constitutional Cohesion and Public Health Promotion - Part I
  6. Health Policy Portal: A New Approach to Treat Childhood Leukemia: Novartis' CAR-T Therapy
Columns
  1. Currents in Contemporary Bioethics: Ethical Responsibilities of Physicians in the Opioid Crisis
Full Journal
Complete Journal Download
ASLME - [PDF]


Table of Contents
Table of Contents
Letter From the Editor
Letter From The Editor
Ted Hutchinson - [PDF]

Symposium issues of the Journal of Law, Medicine & Ethics can come about in many different ways. Often times a potential guest-editor will send a proposal to us, and if we like what we read, we will schedule a symposium issue. Occasionally the editorial staff has a topic in mind, and we seek out a guest-editor to bring the idea to life. The issue you hold in your hands, however, came about a little bit differently. Well more than a year ago my friend Daniel Goldberg was on Twitter, chatting and debating about stigma and health with our mutual friend Ross Silverman. I rudely interjected myself into their (admittedly public) conversation, and noted I long had wanted to produce a special issue on stigma and health. Daniel was intrigued by this idea, and that led to phone calls, which led to a formal proposal, and eventually to our enthusiastic acceptance of Daniel's proposal to produce a special issue on stigma and health. The result of this is the issue of JLME that you hold in your hands; an outstanding collection of papers expertly selected, curated, and edited by Daniel, featuring a collection of eclectic and thoughtful papers from across the globe. Included in this collection are papers by Ross Silverman (the other half of that initial Twitter conversation), Lindsay Wiley, ASLME's President for 2018, and a host of multidisplanary scholars exploring the debilitating effects of stigma on health, including its role as related to incarceration, vaccine refusal, drug laws, opioid addiction, weight, the unhealthy, and examining the role of micro-aggressions and stigma in everyday life. Taken collectively, the papers are an informative and penetrating look at the role that stigma plays in almost everyone's life.
Introductions
Introduction: On Stigma & Health
Daniel S. Goldberg - [PDF]

Stigma is corrosive. It is capable of causing intense psychosocial harm. Even after controlling for every conceivable confounder, members of social groups persistently subjected to stigma get sicker and die quicker than their counterparts. Accordingly, many social epidemiologists regard stigma as an independent social determinant of health. Hatzenbuehler, Link, and Phelan have gone further, labeling stigma a true "fundamental cause of disease" justifying intensive social resources intended to alleviate stigma’s adverse health impact.
Symposium Articles
Stigmatizing the Unhealthy
Jessica L. Roberts and Elizabeth Weeks - [PDF]

Stigma is literally an ugly word. While literally meaning "mark," stigma, as used by Erving Goffman, does not describe a particular trait but rather a social status. Being stigmatized means that members of society value a person less by virtue of her stigmatized trait. Stigma thereby leads to status loss and disadvantage. From a social standpoint, stigma exists to establish and clarify group norms, discourage deviant behavior, and encourage stigmatized individuals to conform by rejoining the group.
Law, Stigma, and Meaning: Implications for Obesity and HIV Prevention
Michael V. Stanton and Jason A. Smith - [PDF]

Stigma is pernicious, intractable, and law has an important role to play in addressing the role of stigma in the provision of health services and in public health policy. Literature on the role of law has focused primarily on addressing issues of discrimination against stigmatized groups and on empowering individuals who experience stigma with tools to resist the effects of stigma. Discussed less is the role of law in addressing issues of meaning and moral experience that are tied to the individual's experiences and thus the individual behavioral consequences of stigma. "Moral experience" is the "register of everyday life and practical engagement that defines what matters most for ordinary men and women."
Everyday Indignities: Using the Microaggressions Framework to Understand Weight Stigma
Lauren Munro - [PDF]

Reflecting on what he and his colleagues considered to be the "chief vehicle for proracist behaviour" in the 1970s, Chester Pierce was the first to use the term microaggressions to describe the subtle, often reflexive, ways that racism is directed at Black Americans. Since then, microaggressions have been linked to various forms of discrimination - including sexism, ableism, and homophobia - and theories have been developed to explain the role of these subtle forms of discrimination in upholding systems of oppression that contribute to health disparities among marginalized groups. Synthesizing the theoretical and empirical work from the microaggressions literature, this paper will offer a brief overview of the microaggressions framework, review the ways that this framework has been taken up with regard to weight stigma by academics and activists and offer insight into its value for conceptualizing and challenging weight stigma.
Borderline: The Ethics of Fat Stigma in Public Health
Cat Pause - [PDF]

Fat stigma refers to the negative stereotypes, associations, and characteristics associated with fatness. Goffman argued that stigma is attached to aspects of an individual that are "deeply discrediting," including "tribal stigmata," "blemishes of individual character" and "abominations of the body." Fatness is discrediting; it is a visible signal to others that the bearer is different, and deviant, and probably dangerous. In the case of fatness, that danger is often presented as the economic risk/burden to society. It is also discreditable, as fatness is a visible stigma.
The Informal Norms of HIV Prevention: The Emergence and Erosion of the Condom Code
Byron Carson - [PDF]

"...it is important to recall that 'safe sex' (a set of practical guidelines for sexual behavior designed to reduce or eliminate the transmission of HIV), which remains the best hope for stopping the epidemic, was originally a gay, grassroots invention. It was created by gay communities in North America and propagated throughout them even before an infectious agent associated with AIDS was discovered; it has continued to undergo periodic renovation ever since, as gay men informally but collectively revise their procedures for protecting themselves and their partners from infection in the light of changing medical technologies, increased experience of them, and more sophisticated mutual understanding"
Prevention & Conservation: Historicizing the Stigma of Hearing Loss, 1910-1940
Jaipreet Virdi - [PDF]

On the evening of October 24, 1937, a Chicago radio station aired a speech entitled "Overcoming the Handicap of Deafness," read by otologist Austin G. Morris. Highlighting the work of the American Society for the Hard of Hearing (ASHH), an advocate group with over 165 chapters across the United States, and its affiliate organization, the League for the Hard of Hearing, Morris' speech launched the start of Chicago's National Hearing Week and the ASHH's awareness campaign on hearing conservation. "We are on the threshold," Morris declared, "of an expanded educational understanding" by the ASHH to direct public attention to the otologist, who "has shown the way back to normal hearing to thousands of patients." Where the otologist's treatment was limited, however, the ASHH and League offered alternatives for deafened people to improve their hearing, including lip-reading classes, speech training, special schools, and hearing aids. Implicit in these overtures, however, was another message: without proper aural health and hygiene care, anyone could be afflicted with hearing impairment.
Returning Home: Incarceration, Reentry, Stigma and the Perpetuation of Racial and Socioeconomic Health Inequity
Elizabeth Tobin Tyler and Bradley Brockmann - [PDF]

Mass incarceration in the United States is unique both historically and internationally. In the past thirty-five years, the incarceration rate has increased fivefold. While the U.S. has 5% of the world’s population, it has 25% of its prisoners. Significant racial disparities exist in the incarceration rate: Black and Hispanic men are incarcerated at 6.6 and 2.5 times the rate of White men, respectively. For those who are or have been incarcerated, the social, economic and health implications are enormous. As Schnittker and Massoglia point out, current and former prisoners constitute a status group, meaning that they "share a negative credential that affects their life chances irrespective of their social origins." Health risks of incarceration are "‘fundamental" in the sense that they may be linked to health through a variety of different mechanisms, not unlike socioeconomic status itself.”
Stigma and the Structure of Title IX Compliance
Jenelle M. Beavers and Sam F. Halabi - [PDF]

Sexual harassment, which includes sexual assault, is widespread and underreported. While there remain important definitional variations across agencies, law enforcement authorities, and academic researchers, the American Association of University Women defines "sexual harassment" as any "… unwelcome sexual advances, requests for sexual favors, direct or indirect threats or bribes for sexual activity, sexual innuendos and comments, sexually suggestive jokes, unwelcome touching or brushing against a person, pervasive displays of materials with sexually illicit or graphic content, and attempted or completed sexual assault." One in four women experience sexual harassment in the workplace. On college campuses, one in five women and one in 16 men experience sexual assault during their college years. Stigma (particularly self-stigma) - the shame, guilt, and embarrassment felt by victims of sexual assault - is a principal barrier to both the recovery and healing of victims and the reporting of assaults to police and caregivers.
Shaming Vaccine Refusal
Ross D. Silverman and Lindsay F. Wiley - [PDF]

Vaccines are one of the greatest advances of the twentieth century, but their effectiveness is imperfect and socially contingent. A few infectious diseases, such as smallpox, are susceptible to global eradication. Upon eradication, preventive measures are no longer necessary and health officials cease routine vaccination. For most infectious diseases, however, the goal of vaccination programs is "elimination of infections … in a defined geographical area[,] [requiring] continued measures to prevent re-establishment of transmission." For a variety of biological, technological, social, and political reasons, vaccination for measles, pertussis, and other vaccine-preventable infections must be continued as a preventive measure long past the point at which local outbreaks have become rare. This creates a dilemma. To achieve population-wide reductions in premature death and morbidity, vaccination must be widely accepted and implemented. When outbreaks of vaccine-preventable diseases have become rare, however, parents may question whether vaccination is truly in their child's best interests.
Treating the "Illness" of Cherubism and Craniofacial Fibrous Dysplasia: Addressing the Stigma of Craniofacial Difference
Amanda Konradi - [PDF]

Diseases affecting the growth of the bones of the face and skull can impact sight, hearing, and dentition and cause the appearance to become asymmetric or distorted in comparison to other similarly aged and gendered members of the population. Stigma is usually a component of the lived experience of diseases that distort the skull and face, both on the basis of the difference of an appearance that is jarring and also because others associate a non-normative visage with intellectual deficits.
A New Framework for Evaluating the Potential for Drug Law to Produce Stigma: Insights from an Australian Study
Kate Seear, Kari Lancaster, and Alison Ritter - [PDF]

The starting point for any analysis of stigma is usually the work of Erving Goffman, who famously defined stigma as "an attribute that is deeply discrediting," as well as one that reduces the bearer "from a whole and usual person to a tainted, discounted one." Individuals understood to display or exhibit discredited attributes are often stigmatized by virtue of being labeled as weak, dangerous or bad. The stigma concept has been applied to an extraordinarily broad range of conditions, activities, circumstances and behaviors. Alcohol and other drug (AOD) use is understood to be one of the most stigmatized activities in the world. Even in Goffman's early work on stigma, problematic AOD use ("addiction," "alcoholism") was included in a list of "discrediting attributes" that almost inevitably give rise to stigma. Writing about stigma within the context of so-called "problematic" forms of AOD use, acclaimed sociologist Robin Room argues that "alcoholism" and drug "addiction" are "thoroughly moralized and derogated categories." A large body of literature has sought to describe how and where AOD-related stigma manifests and how people who use AOD (and particularly people who inject drugs) experience such stigma. The most comprehensive review of this literature internationally was conducted by Lloyd as part of a project for the UK Drug Policy Commission, and focused on the stigmatization of "problem drug users," and on illicit drugs, in particular. This review found that stigma manifests in a range of settings, with numerous consequences. People experiencing stigma may have internalized blame and a lack of self-worth, or they may face structural barriers such as discrimination. Stigma can have a range of effects and can impact for a lifetime. People who have experienced AOD-related stigma and/or discrimination may experience poorer health. They may also experience difficulties securing work or housing and accessing vital health care services, or be deemed unworthy of support and care. Because of the avowedly adverse dimensions of AOD-related stigma, academics, policymakers and advocates are increasingly cognisant of the need to better understand stigma and to address it. One aspect that has been limited in the literature to date is a focus on the law and how it may produce, enhance or protect against stigma.
The Epidemic as Stigma: The Bioethics of Opioids
Daniel Z. Buchman, Pamela Leece, and Aaron Orkin - [PDF]

Opioids are among the most widely prescribed drugs in North America. Population harms related to opioids continue to increase dramatically in North America, including opioid-related deaths, hospital admissions, emergency department visits, and opioid use disorders. In the United States, the rate of drug-related death increased from 6.2 per 100,000 persons in 2000 to 16.3 in 2015, with 64,070 deaths involving an opioid by the end of January 2017. An increase in opioid prescribing beginning in the 1990s was a major driver of the status of opioid-related harms, particularly with the aggressive marketing of long-acting oxycodone. Physician prescribing patterns play less of role than previously, as many people experiencing adverse events have used non-prescription sources of opioids, including fentanyl and heroin. Several jurisdictions have developed comprehensive action plans to address this epidemic and its impacts on communities, families, and healthcare costs.
Independent Articles
My Gametes, My Right? The Politics of Involving Donors' Partners in Egg and Sperm Donation
Katherine M. Johnson - [PDF]

Gamete (i.e., egg and sperm) donation offers a unique opportunity to compare men and women's relationships to reproductive decision-making. This is in distinct contrast to other reproductive processes and events, such as pregnancy and childbirth, which asymmetrically focus on women’s bodies. Theoretically, egg and sperm donation are equivalent procedures; donors provide gametes to others for the intent of procreation where the donor is not considered a parent of the donor-conceived child. However, in both legal and medical practice, egg and sperm donors are treated differently. Egg donation is more medically invasive and is not addressed as comprehensively in state statutes compared to sperm donation, which may explain some differences. Yet, scholars have also shown how gender norms heavily affect the interpretation and enactment of gamete donation.
Voluntarily Stopping Eating and Drinking: A Normative Comparison with Refusing Lifesaving Treatment and Advance Directives
Paul T. Menzel - [PDF]

An informed and competent patient's refusal of lifesaving medical treatment (LSMT) is widely seen as having strong protection. It is a person's moral right, and typically a legal right. The right applies no matter how vital the treatment refused is to the preservation of life. It applies no matter how deliberate, intentional, and assured the death that results from refusal is, and whether or not the illness addressed by the treatment is terminal. The scope of the care that patients may knowledgeably refuse includes both acute lifesaving treatment and continuing life-sustaining care (medical "life support"). It includes withdrawing care midstream as well as initially withholding it. It is a very robust right.
The Ethical Course Is To Recommend Infant Male Circumcision - Arguments Disparaging American Academy of Pediatrics Affirmative Policy Do Not Withstand Scrutiny
Brian J. Morris, John N. Krieger, Jeffrey D. Klausner, and Beth E. Rivin - [PDF]

We critically evaluate an article published in the Journal of Law, Medicine & Ethics by Svoboda, Adler and Van Howe challenging the validity of the American Academy of Pediatrics (AAP) 2012 affirmative policy statement on infant male circumcision (MC). The serious errors in their arguments and claims deserve a detailed response. To assist readers, our critique will follow the section headings of their article.
Linking the Governance of Research Consortia to Global Health Justice: A Case Study of Future Health Systems
Bridget Pratt and Adnan A. Hyder - [PDF]

Global health research partnerships are increasingly taking the form of consortia - alliances of universities, research institutes, and other organizations - that undertake programs of research and/or research capacity strengthening in low and middle-income countries (LMICs). These consortia typically aim to generate new knowledge that will help reduce health disparities between and within countries. Their research programs focus on product development (vaccines, drugs, diagnostics); the delivery, safety, and cost-effectiveness of medical products for specific diseases; broader aspects of health systems (governance, financing, service delivery, human resources, information technology); or the social or structural determinants of particular diseases.
Public Health and the Law: Constitutional Cohesion and Public Health Promotion - Part I
James G. Hodge, Jr. - [PDF]

Constitutional issues pervade the field of public health law for at least two primary reasons. First, protecting the public's health is an essential function of government at all levels (e.g., federal, state, tribal, local) and branches (e.g., legislative, executive, judicial). Constitutional structural arguments grounded in principles of federalism, separation of powers, and preemption, among others, consistently surface in light of interjurisdictional disputes and policies. Second, although public health entities seek voluntary changes in individual or community health behaviors, they are empowered to mandate efforts among private individuals and entities to address or counter threats. Rights-based infringements grounded in due process, equal protection, or freedoms of speech, assembly, and religion are inevitably implicated.
Health Policy Portal: A New Approach to Treat Childhood Leukemia: Novartis' CAR-T Therapy
Frazer A. Tessema and Jonathan J. Darrow - [PDF]

On August 30, 2017, the US Food and Drug Administration (FDA) announced the approval of tisagenlecleucel (Kymriah; CTL019), Novartis' new treatment for B-cell acute lymphoblastic leukemia (ALL) in children or young adults who are either unresponsive to traditional treatments or whose cancers return after periods of remission. Prior to approval, the drug received priority review and breakthrough designations, and had the strong support of the FDA's Oncologic Drugs Advisory Committee (ODAC), which on July 12, 2017 unanimously voted to recommend that the drug be approved.
Columns
Currents in Contemporary Bioethics: Ethical Responsibilities of Physicians in the Opioid Crisis
Mark A. Rothstein - [PDF]

In the next hour, eight Americans will die of a drug overdose. According to the National Center for Health Statistics, in 2016, approximately 71,600 Americans died of a drug overdose. The largest number of deaths, 20,100, were from synthetic opioids excluding methadone (primarily fentanyl and fentanyl analogs), which was more than double the 9,900 deaths the preceding year. There were also 15,400 deaths from heroin; 14,400 deaths from natural and semi-synthetic opioids (including prescription opioids); 10,600 deaths from cocaine; 7,600 deaths from psychostimulants with abuse potential (methamphetamines); and 3,300 deaths from methadone. Between 1999 and 2014, opioid deaths increased nearly fourfold.