Tag: ethnic groups

Bioethics Blogs

Rethinking the Belmont Report?

Some bioethicists link the beginnings of our field to the Nazi Medical experiments and the Nuremberg Trial (Annas). Whether this is the beginning of bioethics is debatable, but without a doubt, research ethics has been a central topic in the field. In fact, the very first federal bioethics commission laid out the principles of research ethics in the Belmont Report. Later, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research recommended to the President and Congress that a uniform framework and set of regulations should govern human subjects research.  This effort reached fruition under The Federal Policy for the Protection of Human Subjects or the “Common Rule” that was issued in 1991.  Since then, there have been no major changes to the regulations – until now.  After a five-year process and thousands of comments, the new “final rule” was released on January 19th, 2017.  The July 2017 issue of the American Journal of Bioethics addresses these changes.  In addition to our usual open peer commentaries, we are posting a number of blog posts written in response to the AJOB target article.


by Ibrahim Garba, MA, JD, LLM, Elizabeth Hall-Lipsy, JD, MPH, Leila Barraza JD, MPH

Norms supporting ethical research have been part of international human rights law from the start. The Doctors Trial in 1947 convicting 23 Nazi physicians and officials accused of euthanasia and unethical medical experiments produced the Nuremburg Code. The Code became a blueprint for subsequent human subject protection frameworks, most notably the World Medical Association’s Ethical Principles for Medical Research Involving Human Subjects (i.e.,

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Racial And Ethnic Disparities Persist In Sudden Infant Deaths

American Indian and Alaska Native families are much more likely to have an infant die suddenly and unexpectedly, and that risk has remained higher than in other ethnic groups since public health efforts were launched to prevent sudden infant death syndrome in the 1990s. African-American babies also face a higher risk, a study finds

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Janis H. Jenkins’ “Extraordinary Conditions: Culture and Experience in Mental Illness” by Katie Barron

Extraordinary Conditions: Culture and Experience in Mental Illness

Janis H. Jenkins

University of California Press, 2015, 343 pages

It has been a privilege, through reading Extraordinary Conditions, to come into contact with a writer and practitioner of extraordinary compassion. The book bears witness to a process of open-ended interviewing that contributed to presenting the lives and experiences of Jenkins’ interlocutors with a deep concern for their dignity and self-esteem.

Part One of Extraordinary Conditions focuses on experiences of schizophrenia among different ethnic groups within the US, while Part Two focuses on trauma among Salvadoran refugees also living in the US. In all the interviews, Jenkins has been especially struck with the “centrality of struggle” which entail the wide variety of difficulties, including, losing jobs and relationships, weight gain as a result of medication, cognitive and logical incoherencies in experience, family criticism, and so forth. To describe the traditionally-named “patient” as an agent struggling to define and attain positive outcomes has political implications, implied in the text though not stated at length, viz. that the psychiatrist and the struggler are placed on an equal footing, as co-workers, along with helpers from other disciplines, working to accomplish negotiated goals.

The contention of the book is that psychiatry and anthropology have much to teach each other. For the anthropologist, studying mental illness within a given group sheds light on the whole group. The “extraordinary” illuminates the “ordinary”. In fact, Jenkins believes that those suffering diagnosed mental illness can be viewed not as different and separate from their community but as typical examples: “those with mental illness are just like everyone else – only more so.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

A Public Cervix Announcement

January 27, 2017

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

A Public Cervix Announcement

On Monday, just days after millions of women (and their allies) marched in political demonstrations, researchers reported a disturbing new finding that could affect the health and wellbeing of these protestors. In a study published in this month’s issue of the journal Cancer, scientists found that a woman’s risk of dying from cervical cancer was much higher than originally suspected.

Cervical cancer is the fourth most common cancer in women worldwide. It also has the fourth highest mortality rate. Approximately 13,000 cases of invasive cervical cancer are diagnosed annually among American women. The number of women diagnosed with cervical cancer has decreased significantly over the past 40 years, largely due to widespread use of the Pap test (or smear) to screen for the presence of precancerous lesions on the cervix, but over 4,000 women still succumb to the disease every year.

Previously, health experts had used those numbers to estimate that cervical cancer killed approximately 5.7 of 100,000 black women and 3.2 of 100,000 white women in the US. That racial disparity in death rates is pretty stark, particularly when you consider rates of cervical cancer incidence and mortality among other racial and ethnic groups. For example, Latinas have even higher incidence rates than black women — Hispanic women in the US are more likely to be diagnosed with cervical cancer — but in recent years the death rate in this group has fallen to the point where it is similar to that of white women.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

A Public Cervix Announcement January 27, 2017 In a study published in this month’s issue of …

January 27, 2017

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

A Public Cervix Announcement

On Monday, just days after millions of women (and their allies) marched in political demonstrations, researchers reported a disturbing new finding that could affect the health and wellbeing of these protestors. In a study published in this month’s issue of the journal Cancer, scientists found that a woman’s risk of dying from cervical cancer was much higher than originally suspected.

Cervical cancer is the fourth most common cancer in women worldwide. It also has the fourth highest mortality rate. Approximately 13,000 cases of invasive cervical cancer are diagnosed annually among American women. The number of women diagnosed with cervical cancer has decreased significantly over the past 40 years, largely due to widespread use of the Pap test (or smear) to screen for the presence of precancerous lesions on the cervix, but over 4,000 women still succumb to the disease every year.

Previously, health experts had used those numbers to estimate that cervical cancer killed approximately 5.7 of 100,000 black women and 3.2 of 100,000 white women in the US. That racial disparity in death rates is pretty stark, particularly when you consider rates of cervical cancer incidence and mortality among other racial and ethnic groups. For example, Latinas have even higher incidence rates than black women — Hispanic women in the US are more likely to be diagnosed with cervical cancer — but in recent years the death rate in this group has fallen to the point where it is similar to that of white women.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

A Public Cervix Announcement January 26, 2017 In a study published in this month’s issue of …

January 26, 2017

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

A Public Cervix Announcement

On Monday, just days after millions of women (and their allies) marched in political demonstrations, researchers reported a disturbing new finding that could affect the health and wellbeing of these protestors. In a study published in this month’s issue of the journal Cancer, scientists found that a woman’s risk of dying from cervical cancer was much higher than originally suspected.

Cervical cancer is the fourth most common cancer in women worldwide. It also has the fourth highest mortality rate. Approximately 13,000 cases of invasive cervical cancer are diagnosed annually among American women. The number of women diagnosed with cervical cancer has decreased significantly over the past 40 years, largely due to widespread use of the Pap test (or smear) to screen for the presence of precancerous lesions on the cervix, but over 4,000 women still succumb to the disease every year.

Previously, health experts had used those numbers to estimate that cervical cancer killed approximately 5.7 of 100,000 black women and 3.2 of 100,000 white women in the US. That racial disparity in death rates is pretty stark, particularly when you consider rates of cervical cancer incidence and mortality among other racial and ethnic groups. For example, Latinas have even higher incidence rates than black women — Hispanic women in the US are more likely to be diagnosed with cervical cancer — but in recent years the death rate in this group has fallen to the point where it is similar to that of white women.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

"American Horror Story" in Real Life: Understanding Racialized Views of Mental Illness and Stigma

By Sunidhi Ramesh
Racial and ethnic discrimination has taken various forms in the
United States since its formation as a nation. The sign in the image
reads: “Deport all Iranians. Get the hell out of my country.”
Image courtesy of Wikipedia.
From 245 years of slavery to indirect racism in police sanctioning and force, minority belittlement has remained rampant in American society (1). There is no doubt that this history has left minorities in the United States with a differential understanding of what it means to be American and, more importantly, what it means to be an individual in a larger humankind.

Generally, our day-to-day experiences shape the values, beliefs, and attitudes that allow us to navigate the real world (2). And so, with regards to minorities, consistent exposure to these subjective experiences (of belittlement and discrimination, for example) can begin to shape subjective perceptions that, in turn, can mold larger perspectives and viewpoints.

Last spring, I conducted a project for a class to address the reception (3) of white and non-white, or persons of color (POC), students to part of an episode from American Horror Story: Freak Show. The video I asked them to watch portrays a mentally incapacitated woman, Pepper, who is wrongfully framed for the murder of her sister’s child. The character’s blatant scapegoating is shocking not only for the lack of humanity it portrays but also for the reality of being a human being in society while not being viewed as human.
Although the episode remains to be somewhat of an exaggeration, the opinions of the interview respondents in my project ultimately suggested that there exists a racial basis of perceiving the mental disabilities of Pepper—a racial basis that may indeed be deeply rooted in the racial history of the United States.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals – September 2016, part one by Aaron Seaman

Welcome to part one of September’s journal post. We start off with a few special issues, which have been highlighted earlier, followed by a great batch of interesting articles for fall reading. Enjoy!

Transcultural Psychiatry – “Practical Anthropology for a Global Public Psychiatry

Medical Anthropology – “Nonsecular Medical Anthropology

New Genetics & Society – “Private, the Public, and the Hybrid in Umbilical Cord Blood Banking

 

Appetite

The traditional food of migrants: Meat, water, and other challenges for dietary advice. An ethnography in Guanajuato, Mexico

Carolyn Smith-Morris

The term “traditional diet” is used variously in public health and nutrition literature to refer to a substantial variety of foodways. Yet it is difficult to draw generalities about dietary tradition for specific ethnic groups. Given the strong association between migration and dietary change, it is particularly important that dietary advice for migrants be both accurate and specific. In this article, I examine the cultural construct of “traditional foods” through mixed method research on diet and foodways among rural farmers in Guanajuato, MX and migrants from this community to other Mexican and U.S. destinations. Findings reveal first, that quantitatively salient terms may contain important variation, and second, that some “traditional” dietary items –like “refresco,” “carne,” and “agua” – may be used in nutritionally contradictory ways between clinicians and Mexican immigrant patients. Specifically, the term “traditional food” in nutritional advice for Mexican migrants may be intended to promote consumption of fresh produce or less meat; but it may also invoke other foods (e.g.,

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Web Roundup: Polarization on the rise by Maria Cecilia Dedios

This web-roundup looks at the problem of polarization. Several events during the past month have brought the issue to the forefront. As a result, the web was filled with debates over this increasing political and social polarization that is indeed becoming more and more evident not only in the U.S. but in many societies around the world.

At the more basic level, polarization refers to the split of social or political groups based on opposing views. Over time, the two sides or “poles” get further and further apart. It is in this dynamic that people, be it group members, party affiliates, or the citizens of a country, find it increasingly hard to remain neutral. Indeed, it can be difficult to counter polarization once the process has been triggered because it tends to happen along economic, political and, moral lines, and because it mobilizes affect and emotions as much (or even more) than rational argumentation. If the whole description sounds oddly familiar, it is because processes of polarization have been prominently in the news this month.

In the U.S., the elections have made obvious a polarization running deep within and between political parties. Ted Cruz’s refusal to endorse Trump was framed along moral lines, as he asked voters to “follow their conscience”, reviving deep divisions in the Republican Party and drawing accusations of betrayal and broken promises. At a different level, the campaign is also exacerbating ingroup-outgroup thinking, splitting Americans along the lines of “us” vs. “them”. The America above all discourse has a strong component of nationalism that is dangerous for many different reasons. Among

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals — March 2016, Part I by Anna Zogas

Here is the first installment of articles published in March. There is a special issue of East Asian Science, Technology and Society on “Body and Enhancement Technology,” and I also want to note that there are reviews of several recently published books about disability collected in this month’s Sociology of Health & Illness.

BioSocieties

DSM over time: From legitimisation of authority to hegemony
Katia Romelli, Alessandra Frigerio and Monica Colombo

The proposed revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association (APA), has reignited a protracted debate in psychiatry and clinical psychology regarding the criteria used to diagnose and classify mental disorders. Drawing on the concepts of legitimisation and hegemony, the aim of this study is to deconstruct how the authoritativeness of the DSM was discursively constructed, legitimised and consolidated over time. To fulfil this purpose, we combine a critical psychology perspective with critical discourse analysis and adopt a multi-level model of analysis that embraces the notions of genre and repertoire in scientific discourse. The materials were approached considering the following interrelated dimensions: (a) semantic macro-areas; (b) discursive strategies; and (c) linguistic means. The data set is constituted by the Forewords and Introductions of different editions of the DSM, from the DSM-I through to the DSM-5. The analysis highlights the discursive strategies that play an important role in self-legitimisation and the construction of a dominant hegemonic discourse.

Ferreting things out: Biosecurity, pandemic flu and the transformation of experimental systems
Natalie Hannah Porter

At the end of 2011, microbiologists created a scientific and media frenzy by genetically engineering mutant avian flu viruses that transmitted through the air between ferrets, the animal most widely used to model human flu.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.