Tag: health status

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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“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.

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What Will 120 Million CRISPR Dollars Buy?

Grandiose visions of CRISPR’s ability to change! revolutionize! transform! the world recently reached a zenith of absurdity in a WIRED cover story titled The Genesis Engine. The article triggered the Twitter hashtag #CRISPRfacts, which for days was devoted to poking fun at the overly optimistic tenor of CRISPR’s press. But the financial world is viewing CRISPR dreams as no laughing matter.

On August 10, Editas Medicine announced that Bill Gates, Google Ventures, Deerfield Management, and other investors have funded CRISPR to the tune of $120 million. In what seems to be a case of self-fulfilling prophecy, the tech press declared that money changes everything, or as one headline put it, “CRISPR: Editas’ $120M proves it isn’t a bunch of hype.”

The $120 million investment takes place amid a CRISPR patent fight between two Editas co-founders: Feng Zhang (Broad Institute) and CRISPR’s celebrated innovator Jennifer Doudna (UC Berkeley) who has since left Editas. It’s the largest round of financing yet for CRISPR, though as Xconomy noted, it’s only a fraction of the private biotech financing record set by Moderna Therapeutics earlier in 2015, when it raised $450 million for messenger RNA drug development.

So there’s a lot going on behind the scenes. Bill Gates and Google, of course, have their hands deep in their own pies of sexy research funding for projects including Gates’ Wi-Fi activated birth control (promised to arrive in 2018) or Calico’s “longevity research.”

One of the striking points of the recent funding announcement is the condition Editas is targeting, a rare form of genetic blindness called leber congenital amaurosis (LCA) that affects roughly 1,000 people in the United States – well under the 200,000-person number that qualifies as an “orphan disease.”

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.