Tag: research findings

Bioethics Blogs

In the Journals – July 2017 by Danya Glabau

American Quarterly

Regina Kunzel

Among the central themes of the eclectic field of mad studies is a critique of psychiatric authority. Activists and academics, from a range of positions and perspectives, have questioned psychiatry’s normalizing impulses and have privileged mad-identified knowledges over expert ones. One of the most successful assaults on psychiatric authority was launched by gay activists in the 1960s and early 1970s, resulting in the removal of homosexuality from the American Psychiatric Association’s (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1973. But if that event marked an inspirational victory against psychiatric power, it was also, as Robert McRuer notes, “a distancing from disability.”1Revisiting this history through analytic lenses offered by disability and mad studies defamiliarizes familiar historical narratives and unsettles the critique of psychiatric authority, especially when countered by claims to health.

 

Conflicts over the value, meaning, and efficacy of vaccination as a preventive practice suggest that vaccination resistance stages disagreement within modern biological citizenship. This paper explores how immunity circulates in both vaccination controversy and biopolitical philosophies. Two positions—one characterized by somatic individualism, flexible bodies, reflexive approaches to knowledge, and the idea of the immune system as “the essential relation the body has with its vulnerability,” and another characterized by the immunitary paradigm, biosecurity, trust in expert systems, and vaccination—emerge. Understanding that oppositional relation can reframe public understanding of vaccine skepticism and public health responses to it.

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

Diagnostic dilemmas: When potentially transient preexisting diagnoses confer chronic harm

By Elaine Walker
Elaine Walker is the Charles Howard Candler Professor of Psychology and Neuroscience at Emory University.   She leads a research laboratory that is funded by the National Institute of Mental Health (NIMH) to study risk factors for psychosis and other serious mental illnesses.  Her research is focused on the behavioral and neuromaturational changes that precede psychotic disorders.   She has published over 300 scientific articles and 6 books. 
The diagnostic process can be complicated by many factors. Most of these factors reflect limitations in our scientific understanding of the nature and course of disorders. But in the current US healthcare climate, legislative proposals concerning insurance coverage for preexisting conditions add another layer of complexity to the diagnostic process. It is a layer of complexity that is riddled with ethical dilemmas which are especially salient in the field of mental health care. The following discussion addresses the interplay between medical practice and health-care system policy in the diagnostic process. The diagnosis of psychiatric disorders is emphasized because they present unique challenges [1]. 

Of course, some of the complications associated with diagnosis are a function of ambiguous and/or changing diagnostic criteria. For example, the criteria for designating the level of symptom severity that crosses the boundary into clinical disorder change over time as a function of scientific advances. This has occurred for numerous illnesses, including metabolic, cardiovascular, and psychiatric disorders [2]. Further, especially in psychiatry, diagnostic categories undergo revision over time, even to the extent that some behavioral “syndromes” previously considered an illness have been eliminated from diagnostic taxonomies.

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

Tune Ups to Belmont & Common Rule Need to Consider Community-Engaged Research

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 Eric Wat MA, Nancy Shore PhD, Sarena D Seifer MD, CCPH, Lola Sablan-Santos, Alice Park MPH, Mei-Ling Isaacs MPH, Ahahui Malama I Ka Lokahi, Kelly Edwards PhD, Elaine Drew PhD, John Cooks, Paige Castro-Reyes BS BA, CCPH

We concur with Friesen and colleagues’ (2017) assertion that the Belmont Report requires, at a minimum, a “tune-up” to better reflect the unique ethical values and demands of community-engaged research (CEnR).

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

Making the theoretical practical: Engaging undergraduate students in research methods by Hannah Mohammad

I am currently an undergraduate student in the Department of Global Health & Social Medicine at King’s College London. The Department’s UG program offers students the opportunity to study social aspects of health and medicine in a multi-disciplinary context with close collaboration between the social sciences, life sciences and biomedicine. In addition, a great emphasis is put on methods training to equip students to carry out their own empirical research projects.

Already in first year, the Research Practice and Design Studio course taught us theories and practices required for qualitative and quantitative research. However, in our undergraduate bubble, these late Tuesday afternoon sessions seemed somewhat distant from conducting actual research. In order to address this perceived disconnect, our course instructor, Dr Laurie Corna decided to adopt a problem-based learning approach that allowed us students to be positioned as emerging researchers whilst learning theoretically about a range of issues central to quantitative and qualitative research designs.

A new research methods course was designed around a series of case-based learning activities that culminated in students conducting their own mixed-methods research. Students’ assignments for the course involved working in teams of two on applying and executing various aspects of the research process in relation to the predefined topic “Physical activity in the city of London”.[1] That is, we learned how to articulate research questions, identify ethical problems, write a research proposal and develop related interview topic guides as well as survey questionnaires. Once we had conducted our research, we were tasked to present our findings in the form of a poster during a “Research Showcase” and create a final report on the research project.

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 – May 2017 by Livia Garofalo

Please enjoy the article round-up for the month of May! This post was put together in collaboration with Ann Marie Thornburg.

American Ethnologist

Plant matters: Buddhist medicine and economies of attention in postsocialist Siberia

Tatiana Chudakova

Buddhist medicine (sowa rigpa) in Siberia frames the natural world as overflowing with therapeutic potencies: “There is nothing in the world that isn’t a medicine,” goes a common refrain. An exploration of sowa rigpa practitioners’ committed relations with the plants they make into medicines challenges human-centric notions of efficacy in anthropological discussions of healing. Their work of making things medicinal—or pharmacopoiesis—centers on plants’ vital materialities and requires attention to the entanglements among vegetal and human communities and bodies. Potency is thus not the fixed property of substances in a closed therapeutic encounter but the result of a socially and ecologically distributed practice of guided transformations, a practice that is managed through the attentive labor of multiple actors, human and otherwise. In Siberia, pharmacopoiesis makes explicit the layered relations among postsocialist deindustrialization, Buddhist cosmologies, ailing human bodies, and botanical life.

Annals of Anthropological Practice

Special Issue: Continuity and Change in the Applied Anthropology of Risk, Hazards, and Disasters

Disaster vulnerability in anthropological perspective 

A.J. Faas

In the study of disasters, the concept of vulnerability has been primarily employed as a cumulative indicator of the unequal distributions of certain populations in proximity to environmental and technological hazards and an individual or group ability to “anticipate, cope with, resist and recover” from disaster (Wisner et al. 2004). This concept has influenced disaster research as a means to question how natural, temporary, and random disasters are and focused analysis on the human-environmental processes that produce disasters and subject some populations more than others to risk and hazards.

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

Why Addiction Narratives Matter

By Katie Givens Kime
Image courtesy of
Merrimack Repertory Theatre.

“My Higher Power is: Science!” proclaims Sean, a newly recovered alcoholic. “Sean” is the lead character in a comedic play, “The White Chip,” which premiered last year at Merrimac Repertory Theatre outside of Boston, Massachusetts. Written by Sean Daniels, the play dramatizes Daniels’ own near demise from alcoholism, and his experience of recovery. Neuroethics is writ large as the play tells the story of how critically important various addiction etiologies can be for those struggling with alcoholism, or addiction of any sort. In Sean’s case, the etiology is the brain disease model of addiction (BDMA) in a notable combination with the “Higher Power” understanding of 12-step programs, which he credits with saving his life. Behind the curious twists of the play, questions linger: which model of addiction should be presented to those in recovery, when so much conflict exists amongst addiction researchers, clinicians, and recovery care providers? At what point does an effective (potentially life-saving) narrative of addiction etiology supersede the obligation to provide all sides of the controversial matter of addiction modeling?

When Sean “hits bottom,” he has destroyed his career, his marriage, his health, and nearly lost his life while driving drunk. He enters a rehabilitation facility, but struggles with the suggestion that he find a “Higher Power.” Such a practice is reflective of the metaphysical claim central to Alcoholics Anonymous, and every other 12-step program: surrender to a Higher Power of the addict’s understanding, and is perhaps the most significant distinguishing feature separating 12-step methods from other recovery pathways.

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

Moving Toward Answers in ME/CFS

Thinkstock/Katarzyna Bialasiewicz

Imagine going to work or school every day, working out at the gym, spending time with family and friends—basically, living your life in a full and vigorous way. Then one day, you wake up, feeling sick. A bad cold maybe, or perhaps the flu. A few days pass, and you think it should be over—but it’s not, you still feel achy and exhausted. Now imagine that you never get better— plagued by unrelenting fatigue not relieved by sleep. Any exertion just makes you worse. You are forced to leave your job or school and are unable to participate in any of your favorite activities; some days you can’t even get out of bed. The worst part is that your doctors don’t know what is wrong and nothing seems to help.

Unfortunately, this is not fiction, but reality for at least a million Americans—who suffer from a condition that carries the unwieldy name of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a perplexing disease that biomedical research desperately needs to unravel [1]. Very little is currently known about what causes ME/CFS or its biological basis [2]. Among the many possibilities that need to be explored are problems in cellular metabolism and changes in the immune system.

A number of studies suggest that abnormalities in cellular metabolism, a complex biological process that the body uses to create energy [3][4][5], may underlie ME/CFS. A recent study of metabolite pathways in blood samples from people with ME/CFS reported a signature suggestive of a hypometabolic condition, similar to a phenomenon biologists have studied in other organisms and refer to by the term “dauer” (a hibernation-like state) [5].

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

"Inflammation might be causing depression": Stigma of mental illness, reductionism, and (mis-)representations of science

by Katie Givens Kime
Image courtesy of Flickr

Is depression a Kind of Allergic Reaction?” Provocative headlines like these appear throughout popular media. Besides misrepresenting scientific findings, such journalistic coverage impacts perceptions of mental illness, as well as expectations of those seeking treatment. In last month’s Neuroethics in the News talk, Dr. Jennifer Felger, from Emory’s Department of Psychiatry and Behavioral Sciences, shared her experiences and insights on the translation (and mistranslation) of research by journalists. In relating the story of her own interactions with the media, Felger emphasized the complex and varying transactional relationships between journalists and scientists. The impact of such coverage carries notable neuroethical dimensions, potentially affecting the capacity for agency and/or aspects of a sense of self for a person experiencing mental illness.

The work of Felger and others on the role of inflammation in depression emerges from widespread observations that stress and other psychological experiences, particularly chronic stress, can weaken immune responses, leaving individuals more susceptible to illness. Such vulnerability can lead to common illnesses, like colds and flus, or even contribute to major illnesses, like cardiovascular disease, cancer, and inflammatory illnesses. On the other hand, once the immune system is activated by disease, stress, trauma, or even treatments for medical illness (e.g. chemotherapy), activated immune cells can release inflammatory mediators like cytokines. These mediators, along with the immune cells, can move into the brain, affecting neurotransmitter function, leading to behavioral changes, and even causing clinical depression.
Image courtesy of GetStencil.com 

The particular area of research for Felger and some of her colleagues involved examining the mechanisms of cytokine action on the brain, and determining how cytokine action can lead to specific depressive symptom clusters.

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 – November by Christine Sargent

Hello trusty readers. Check out November’s haul for “In The Journals,” and be sure to check out the special issue of Science, Technology, and Human Values: Feminist Postcolonial Technosciences.

 

American Ethnologist:

Memory, body, and the online researcher: Following Russian street demonstrations via social media (open access)

Patty A. Gray

The Moscow street demonstrations of 2011–12 were the largest public gatherings in Russia since the collapse of the Soviet Union. They were also the largest-ever gathering of Russians on social media. While using the Internet to follow such large-scale social movements remotely, researchers experience social media as a context in which anthropology happens. They may think about “being there” in new ways that shift their focus to their own processes of memory making and sense of bodily presence. Experiencing and remembering social media in the body challenges the distinctions we might otherwise make between virtual and physical encounters.

Royal pharmaceuticals: Bioprospecting, rights, and traditional authority in South Africa

Christopher Morris

The translation of international biogenetic resource rights to a former apartheid homeland is fostering business partnerships between South African traditional leaders and multinational pharmaceutical companies. In the case of one contentious resource, these partnerships are entrenching, and in some instances expanding, apartheid-associated boundaries and configurations of power. The state and corporate task of producing communities amenable to biodiversity commercialization and conservation is entangled with segregationist laws and spatial planning. Rather than exclusion and the closure of ethnic boundaries, resource rights in this context foreground forced enrollment and the expansion of indigenous group-membership as modes of capitalist accumulation in an extractive economy.

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

Is It Okay to Say that Research ‘Verges on Scientific Racism’? by Matthew Wolf-Meyer

Last fall, a group of researchers – mostly biological anthropologists and sleep researchers – published a study of three ‘pre-industrial’ communities, one in Latin America, two in Africa, and claimed that based on their data, consolidated nightly sleep is a human norm, inferring that it is the product of natural selection. The media picked up the research findings, and I read write ups of it in a number of outlets, which led me to the original article and sparked conversations with me and other sleep-interested scholars about the validity of the research. A couple of months later, I was asked by the editor of Sleep Health if I would like to respond to the findings of the article (which you can find here), in part because the researchers made an argument against a claim that I have made – corroborating Roger Ekirch – that human sleep has only recently consolidated, largely as a result of industrial capitalism in the 19th century. But I was primarily motivated by the anthropology-informed opportunity to point out that no contemporary society offers us a window to some pre-industrial past or earlier evolutionary moment. To suggest otherwise – and here I’m quoting myself – ‘verges on scientific racism.’

So what was the assumption that the researchers were working off of that would lead them to such a claim and why would I find it controversial? They took a form of social organization – namely hunter-gatherer foraging – as indicating that the people who practice that form of subsistence share qualities with a stage of human history when that social organization was predominant.

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.