Tag: health status

Bioethics Blogs

A Time for Global Health Ethics

Solomon Benatar advocates for a paradigm shift in conceptions of health and Bioethics.

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It has long been known that poverty strongly influences the prevalence and mortality rates of diseases like tuberculosis. This remains true today – the Ebola epidemic emerged and raged in three of the world’s poorest countries. Yet only recently has it been widely and publicly acknowledged that health more generally is significantly determined by social circumstances.

Dramatic advances in diagnostic techniques (including sophisticated scanning methods) and in various therapeutic aspects of health care (for example, keyhole surgery and new drugs) have generated considerable optimism for narrowing health disparities and achieving convergence of global health status within a generation. This optimism is unjustified, however, because there has been relatively limited social progress within broader contexts.  For example, defining severe poverty as living on less than $2 per person per day, shamefully underestimates what it means to be poor. It also portrays unrealistic interpretations of what is required to achieve healthier and longer lives for more people.

The shift from pre-modern, non-scientific medicine to modern, highly scientific, technically oriented and personalized medicine required a new paradigm of thought. So too a shift in attention from individual health to population health requires new ways of thinking, including an expansion of the current Bioethics discourse.

The first image ever taken by humans of the whole Earth (1968), probably photographed by William Anders.

Almost 50 years ago, the looming environmental threats to health from vastly expanding (and wasteful) consumption of non-renewable resources led to a proposal that Bioethics be defined as the study of the ethics of human life, inclusive of our interactions with the biosphere.

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

The Disorientation of Illness

Ami Harbin considers how positioning health as the personal responsibility of individuals may contribute to the disorientation of illness.

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Being diagnosed with an illness, undergoing treatment, and being identified (by oneself and others) as sick can be very difficult. In my recent book, I argue that illness is sometimes disorienting. Like other disorientations, it can be a major, sustained experience that makes it difficult to know how to go on.

A great deal of empirical research I survey investigates the ways that illness can be disorienting.  A number of studies show how cancer, HIV, arthritis, heart conditions, ALS, organ transplants, and many other illnesses can make it difficult, for both people with illness and their loved ones, to know how to go on. As one participant in a study of women with lupus described her experience, “Illness is like an unexpected thief that attacks one’s life and destroys one’s life expectations. With illness, goals in life fade away…One has to painfully reconstruct one’s expectations.”

We know that serious illnesses are possible and, if we live long enough, increasingly likely.  Why, then, would we be disoriented by them?

A life event can be fully expected, or even deliberately pursued, and still disorient us. Even if one fully expects to face illness at some point, illness can still be a major, sustained experience that makes it difficult to know how to go on. We don’t yet know how to be a person with this illness, and we don’t yet know how our life plans will need to change in light of 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 News

Just 5% of Terminally Ill Cancer Patients Fully Understand Prognosis, Study Finds

May 25, 2016

(ABC News) – Researchers from Memorial Sloan Kettering Cancer Center, Cornell University and Weill Cornell Medicine followed 178 cancer patients who were determined to be terminally ill. They interviewed the patients to see if they understood the gravity of their disease and their prognosis. Patients were asked what stage cancer they had, their current health status, how long they expected to live and if they had recently had a life-expectancy discussion with their doctor. Just 5 percent of the patients accurately answered all four questions about their disease and prognosis correctly.

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

Special Issues: Psy Sciences and Healthism by Anna Zogas

In advance of our regular monthly journal round-up, here are two special issues to check out! First, the brand new June 2016 issue of East Asian Science, Technology and Society is titled Transnational Psy Sciences in East and Southeast Asia. Next, a special double issue of Eä – Journal of Medical Humanities & Social Studies of Science and Technology (open access) is titled Healthism & Self-Care: Reconfiguring Body & Life through Science & Technology. Enjoy!

East Asian Science, Technology and Society

Transnational Psy Sciences in East and Southeast Asia

From the 1970s onward, the psy sciences were witness to blustering confrontations from a New Age movement heavily informed by Asian philosophy. Nowadays, yoga practices and mindfulness training have been integrated into mainstream psychotherapy. Nevertheless, such trends toward East-West admixing are in fact not at all new. Through four case studies, this special issue provides empirical data complementing the abundance of new scholarship on the history of psy sciences in East and Southeast Asia.

Making and Mapping Psy Sciences in East and Southeast Asia (open access)
Harry Yi-Jui WuWen-Ji Wang

The rich history of psy disciplines or psy sciences (psychology, psychiatry, psychotherapy, psychoanalysis) in modern society has been subject to different and sometimes conflicting interpretations. Major events, theories, and figures have been recorded and the meaning of their contributions explored to illustrate the ways in which various forms of psychological knowledge become important sources of self-understanding and self-actualization. Insights into the social and cultural history of psy sciences enable us to understand the interconnection between forms of knowledge and the social order to which they relate (Eghigian et al.

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 – April Part II by Michelle Pentecost

Another set of great papers from the journals in April. Enjoy!

 

 Social Science & Medicine

‘I knew before I was told’: Breaches, cues and clues in the diagnostic assemblage

 Louise Locock, Sarah Nettleton, Susan Kirkpatrick, Sara Ryan and Sue Ziebland

Diagnosis can be both a ‘diagnostic moment’, but also a process over time. This paper uses secondary analysis of narrative interviews on ovarian cancer, antenatal screening and motor neurone disease to explore how people relate assembling procedural, spatial and interactional evidence before the formal diagnostic moment. We offer the idea of a diagnostic assemblage to capture the ways in which individuals connect to and re-order signs and events that come to be associated with their bodies. Building on the empirical work of Poole and Lyne (2000) in the field of breast cancer diagnosis, we identify how patients describe being alerted to their diagnosis, either through ‘clues’ they report picking up (often inadvertently) or through ‘cues’, perceived as a more intentional prompt given by a health professional, or an organisational process. For patients, these clues frequently represent a breach in the expected order of their encounter with healthcare. Even seemingly mundane episodes or behaviours take on meanings which health professionals may not themselves anticipate. Our findings speak to an emergent body of work demonstrating that experiences of formal healthcare during the lead-up to diagnosis shape patients’ expectations, degree of trust in professionals, and even health outcomes.

 

Socio-economic divergence in public opinions about preventive obesity regulations: Is the purpose to ‘make some things cheaper, more affordable’ or to ‘help them get over their own ignorance’?

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

Summer Roundup: Bioculturalism by Deanna Day

We continue our set of summer roundups by focusing our attention on a series of interviews conducted by Jeffrey G. Snodgrass. Snodgrass spoke with William Dressler, Emily Mendenhall, Christopher Lynn, and Greg Downey on the subject of bioculturalism, aiming to get anthropologists and closely-related others talking seriously, and thinking practically, about how to synergize biological and social scientific approaches to human health and well-being, and to what positive ends.

 

Introduction: “Bioculturalism: The Why and How of a Promising Medical Anthropological Future”

“I’m perplexed by cultural anthropology’s antagonism toward biology, with culture and biology more typically treated as providing alternate and competing, rather than complementary and synergistic, explanations for human functioning. This is particularly strange to me—a practicing cultural anthropologist with a background in molecular biology—when even medical anthropologists fail to account for the role biology plays in shaping human health. Wouldn’t such a consideration enrich our comprehension of the interplay between sociocultural milieus and human bodies?… To sketch a blueprint for such a future, I have invited a group of self-professed ‘biocultural anthropologists’ to address the question, ‘How might cultural anthropology gain by taking biology more seriously?’” —Jeffrey G. Snodgrass

 

Interview: William Dressler

“Anthropological analyses are full of intriguing theoretical and ethnographic models proposing processes that operate at many levels, ranging from the molecular to the symbolic. Very often I find myself reading such analyses, only to get to the end thinking: “and……?” I’m waiting for the other shoe to drop, in the sense of what the implications of those processes might be for health or biological outcomes.

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 (Part 2) by Melanie Boeckmann

Health, Risk & Society

Towards a better understanding of risk-taking: key concepts, dimensions and perspectives

Jens O. Zinn

The current study of risk is dominated by the risk minimisation approach that frames risk and risk-taking as something undesirable that should be avoided as much as possible. However, this approach to risk often fails to consider the broader conditions and motivations of risk-taking and to examine why people expose themselves to danger. In this editorial, I explore two key concepts – voluntary risk-taking and risk behaviour – considering the ways in which they represent opposing views in risk studies. I make the case for a broader approach to ‘risk-taking’ that addresses the complex tensions between risk-taking and risk aversion in the social, natural and material contexts of everyday life. I examine how risk-taking is characterised by varying degrees of control over decision-making, different mixes of motives, the impact of socio-structural factors, forms of routinisation and habitual risk-taking, how power is involved in risk-taking and how identity is used to challenge experts’ views. I discuss the role of stigma in risk-taking and how general societal contexts and organisational cultures influence the risk-taking. While there is increasing research on risk-taking, there is still scope for further publications that will advance our understanding of risk-taking in its social contexts, and in this editorial, I address issues that will form the basis of a forthcoming special issue of Health, Risk & Society.

‘Fuzzy’ virus: indeterminate influenza biology, diagnosis and surveillance in the risk ontologies of the general public in time of pandemics

Davina Lohm, Mark Davis, Paul Flowers & Niamh Stephenson

Influenza viruses are radically uncertain, leading to scientific and procedural challenges for diagnosis and surveillance and lending influenza symptoms a high degree of indeterminacy.

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

Will America Ever Come To Terms With Its Past?

In my last blog I wrote, what was in effect, a review of three books from my summer reading I did while on vacation. The first book covered the life of George Washington from the time of his resignation as General in the Continental Army, through his leadership in the Constitutional Convention in 1788, until his inauguration ceremony on 1789. The second book was a narrative history of the Great Migration of African Americans from the Jim Crow south to Northern and Western cities, and the hardships they endured throughout. And finally the third book was a contemporary description of what it is like to live in a black body today in the United States. I have been continuing my thoughts on the fate of blacks in America.

From the era of George Washington, we see the American political and social power structure becoming embedded into a political system filled, from the first moment with enormous hope but with equal, deeply troubling contradictions. There was eloquent language of the “many” no longer having to remain subservient to the “few” that seemed to reflect through reason the rights of human kind. Yet it was equally clear that Washington’s America was created to protect the financial interests of privileged white males as many human beings were excluded from participation in the new, fledgling nation, including women, native Americans who would be driven from the lands and basically exterminated, and African Americans, a few of whom were free but most enslaved as the property of white slave owners. For any semi-reflective human being with only limited moral insight, this would be an obvious contradiction and a barrier to viewing this grand experiment as worthy of moral support and allegiance.

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

Creative Minds: Lessons from Halfway Around the Globe

Caption: Duncan Maru (right) and Community Health Director Ashma Baruwal (left) evaluating a patient in rural Nepal.
Credit: Allison Shelley

A decade ago, as a medical student doing volunteer work at a hospital in India’s capital of New Delhi, Duncan Maru saw a young patient who changed the course of his career: a 12-year-old boy in a coma caused by advanced tuberculosis (TB). Although the child had been experiencing TB symptoms for four months, he was simply given routine antibiotics and didn’t receive the right drugs until his parents traveled hundreds of miles at considerable expense to bring him to a major hospital. After five weeks of intensive treatment, the boy regained consciousness and he was able to walk and talk again.

That’s quite an inspiring story. But it’s also a story that haunted Maru because he knew that if this boy had access to good primary care at the local level, his condition probably never would have become so critical. Determined to help other children and families in similar situations, Maru has gone on to dedicate himself to developing innovative ways of providing high-quality, low-cost health care in developing areas of the world. His “lab” for testing these efforts? The South Asian nation of Nepal—specifically, the poverty-stricken, rural district of Achham, which is located several hundred miles west of the national capital of Kathmandu.

Maru is the founder of Possible, a non-governmental organization that currently manages Achham’s health care system through a public-private partnership with Nepal’s Ministry of Health and Population. Since 2008, Possible has treated over 170,000 patients in Achham with its web of community health workers, clinics, government hospitals, and a referral network.

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

“Bioculturalism” — An interview with Christopher Lynn by Christopher D. Lynn

This series aims to get anthropologists and closely-related others talking seriously, and thinking practically, about how to synergize biological and social scientific approaches to human health and well-being, and to what positive ends. In this interview, Christopher Lynn responds to questions posed by series organizer Jeffrey G. Snodgrass.

 

How and why might cultural anthropologists and social scientists interested in health benefit from integrating biological variables/biomarkers into their research and analysis?

Cultural anthropologists and other social scientists interested in health should be interested in some objective indication of health status as reflective, at least in part, of physiological status. I don’t feel health issues have been sufficiently addressed if they are not approached integratively in this way. That is not to say that all my projects have gotten there yet or that biomarkers are always necessary in all health-oriented research, but without at least an accompanying biological perspective, any interpretation is lacking. One way of taking an integrated perspective and including biomarkers where feasible and informative is through basing research and data analysis in Tinbergen’s four “Why” questions. This ethological approach lends itself to participation as well as observation and recommends that we examine behavior (1) historically (culturally and phylogenetically), (2) developmentally (what is the role of age, maturity, family, expectations of those stages?), (3) functionally (physiologically or functionalist-ly), and (4) proximally (psychological cause-effect).

I guess that’s viewing it from the biological side and seeing culture as critical rather than vice versa. I don’t see that there’s any way around me seeing things through the lens of a biological anthropologist, but it’s important to note that this is distinct from how biologists often utilize ethology and Tinbergen, which often lacks awareness of cultural relativity.

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.