Tag: epidemiology

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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.

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The Trials of Patient O

By: Jennifer Cohen

In 1987, Harry Reasoner of 60 Minutes questioned Dr. Selma Dritz about her search in the early 1980s for the origins of the deadly outbreak of AIDS in the United States. “It was the whodunit of the century, and I was born nosy,” she tells him. The title of the 60 Minutes piece was “Patient Zero” who Mr. Reasoner explains “was a man – a central victim and victimizer” in the spread of AIDS.  Dr. Dritz, who had been the head of infectious diseases in the San Francisco branch of the Centers for Disease Control and Prevention (CDC), recalled warning Patient Zero of the danger he posed to others. In her retelling, Mr. Dugas callously rebuffed her concerns, showed little remorse for infecting others, and concluded their interaction with “screw you.” Also interviewed was Randy Shilts whose book, And the Band Played On, identified Patient Zero as Gaëtan Dugas, a Canadian flight attendant. Mr. Shilts explained that Mr. Dugas constituted what epidemiologists today call a superspreader – someone with unlimited ability to infect others and “speed this disease into every corner of America.”  The narrative of a villainous foreigner maliciously spreading a deadly epidemic culminated in an infamous New York Post headline condemning Mr. Dugas as “THE MAN WHO GAVE US AIDS.”

The story unraveled upon closer inspection.  In 1984, the CDC had indeed identified a “Patient O” who had sexual connections with other AIDS patients, but the “O” stood for “Outside” California. Nowhere in the study is “Patient O” identified as “Patient Zero” — 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.

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In the Journals: February 2017 by Christine Sargent

American Ethnologist

Good ramps, bad ramps: Centralized design standards and disability access in urban Russian infrastructure

Cassandra Hartblay

Accessible design seeks to reconfigure the social by restructuring the material. As the idea moves globally, it becomes entwined in local logics of moral obligations between citizens and the state. Wheelchair users in the city of Petrozavodsk, in northwestern Russia, talk about inaccessible infrastructure as being embedded in moral relationships. In their stories, hierarchies of expertise diffuse responsibility for outcomes and devalue user knowledge. When accessible design elements are installed to meet minimum standards, they are “just for the check mark” and often do not “work.” Wheelchair ramps produce value for businesses or governments by representing an idea of access that circulates as a commodity. Failed accessible design draws attention to a moral field governing the responsibilities of actors to produce a “good” built environment, imbricated in teleologies of progress. [disability, design, infrastructure, access, ramps, postsocialism, Russia]

Self-governance, psychotherapy, and the subject of managed care: Internal Family Systems therapy and the multiple self in a US eating-disorders treatment center

Rebecca J. Lester

“The self” has seen a surprising resurgence in recent anthropological theorizing, revitalizing interest in whether and how it can be studied ethnographically. These issues are brought to the fore by a newly popular psychotherapy technique, Internal Family Systems therapy (IFS), as practiced in a US eating-disorders clinic. There, clinicians and clients negotiate tensions between this model’s understanding of a multiple, refracted self and managed-care companies’ insistence on personal responsibility. In considering the moral and pragmatic work of IFS in the clinic, a new critical anthropology of selfhood illuminates the vectors through which economic and political commitments become imbricated in the self.

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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Dangerous Love and Anti-Love Drugs: Neuroethics & Public Health Problems

By Kelsey Drewry
Kelsey Drewry is a student in the Master of Arts in Bioethics program at the Emory University Center for Ethics where she works as a graduate assistant for the Healthcare Ethics Consortium. Her current research focuses on computational linguistic analysis of health narrative data, and the use of illness narrative for informing clinical practice of supportive care for patients with neurodegenerative disorders.
The half-priced heart-shaped boxes of chocolates lining grocery store shelves serve as an undeniable marker of the recent holiday. Replete with conceptions of idyllic romance, Valentine’s Day provides an opportunity to celebrate partnership, commitment, and love. However, for those experiencing heartbreak or unrequited love, Cupid may be a harbinger of suffering rather than giddy affection.

The transition from love to pain is an incredibly common experience, and one that is formative for many. The extent of character building in heartbreak and other negative affection experiences is bounded, though, by certain types of “dangerous love”. According to Brian Earp and colleagues, this classification might include domestic abuse, pedophilia, or even jealousy-induced homicide (Earp et al 2013). The suffering associated with these cases surpasses any beneficial emotional development, leading instead to potential enduring physical and psychological harms. Instances of “dangerous love” might become the targets for “drugs that manipulate brain systems at whim to enhance or diminish our love for one another” (Young 2009, 148), which seem to be a reasonable potential product of current trajectories of neuropharmocological research.
Image courtesy of Flikr

These “anti-love” drugs are certainly beneficently intended, and may indeed be of great value in some instances.

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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Handbook of the Philosophy of Medicine

Now available – Handbook of the Philosophy of Medicine – 68 chapters spanning over 1000 pages.


This is the first wide-ranging, multi-authored handbook in the field of philosophy of medicine, covering the underlying conceptual issues of many important social, political and ethical issues in health care. It introduces and develops over 70 topics, concepts, and issues in the field. It is written by distinguished specialists from multiple disciplines, including philosophy, health sciences, nursing, sociology, political theory, and medicine. 


Many difficult social and ethical issues in health care are based on conceptual problems, most prominently on the definitions of health and disease, or on epistemological issues regarding causality or diagnosis. Philosophy is the discipline that deals with such conceptual, metaphysical, epistemological, methodological, and axiological matters. 


This handbook covers all the central concepts in medicine, such as ageing, death, disease, mental disorder, and well-being. It is an invaluable source for laypeople, academics with an interest in medicine, and health care specialists who want be informed and up to date with the relevant discussions. The text also advances these debates and will set the agenda for years to come.


Philosophy of Medicine and Bioethics
Schramme, Thomas

Normality as Convention and as Scientific Fact
Chadwick, Ruth

On Concepts of Positive Health
Nordenfelt, Lennart

Disease as Scientific and as Value-Laden Concept
Kingma, Elselijn

Mental Disorders as Genuine Medical Conditions
Wakefield, Jerome C.

Curing and Healing: Two Goals of Medicine
Szawarska, Dorota

Illness and Its Experience: The Patient Perspective
Carel, Havi

Nursing as Caring
Sellman, Derek

Goals of Medicine
Schramme, Thomas

Suffering: Harm to Bodies, Minds, and Persons
Hofmann, Bjørn

Disability as Medical and as Social Category
Edwards, Steven

Subjective and Objective Accounts of Well-Being and Quality of Life
Schramme, Thomas

Pain as a Subjective and Objective Phenomenon
Dekkers, Wim

Death as Biological Category
Holland, Stephen

Suicide
Edwards, Steven

Enhancing Human Abilities and Characteristics Beyond Normality
Bloodworth, Andrew

How Can Aging Be Thought of as Anything Other Than a 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.

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Celebrity Medicine: Ben Stiller’s Prostate Edition

by Kaitlynd Hiller

During an interview in early October, Ben Stiller spoke publicly for the first time about his successful battle with prostate cancer, and how, if it were up to the American Cancer Society (ACS), perhaps he wouldn’t have won. Stiller also published a same-day article on Medium[1] that detailed the care he received and the factors that guided those decisions. Although this public reveal is reminiscent of Angelina Jolie’s 2013 Op-Ed on genetic testing and prophylactic mastectomies, Stiller’s is more controversial. Not only did he pursue screening earlier than suggested and question the evidence-based national guidelines, he’s also gone on to advocate for a position that many public health experts today are trying to walk back on: that screening saves lives.

Unlike Jolie, Stiller had no family history of the disease he received screening for. At the time he began having his PSA levels routinely tested, Stiller was 48 years old with no other known risk factors. The ACS recommends starting the discussion of prostate screening with men like Stiller (counted as “average risk”) at age 50.[2] The American Urological Association’s guideline does not recommend annual screening in average risk men ages 40 to 55 years, and the US Preventative Services Task Force recommends against the use of the PSA test in all asymptomatic, average risk populations.[3] Stiller credits his cancer-free status to his “thoughtful internist,” who began discussing PSA testing multiple years ahead of what these guidelines suggest. Ben puts it into perspective: “If [my doctor] had waited, as the American Cancer Society recommends, until I was 50, I would not have known I had a growing tumor until two years after I got treated.

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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David S. Jones’s “Broken Hearts: The Tangled History of Cardiac Care” by Jennifer Fraser

Broken Hearts: The Tangled History of Cardiac Care

by David S. Jones

The Johns Hopkins University Press, 2013, 336 pages.

 

My first encounter with David S. Jones’ Broken Hearts was in April of 2016. I had packed it in my carry-on luggage as on-plane entertainment while traveling to Minneapolis, MN for the eighty-ninth annual meeting of the American Association for the History of Medicine (AAHM). How fitting, I thought, to read about the history of heart disease in the “cradle of cardiac care,”[1] a city that transformed America’s medical enterprise by developing many innovative inventions and techniques in the field of cardiology.

And fitting it was. The conference was teeming with allusions to the University of Minnesota’s cardiac legacy. Not only was there an exhibition on the history of cardiac disease epidemiology developed by the university’s School of Public Health, but there was also a guided tour of the Visible Heart Project, a research laboratory dedicated to reanimating mammalian hearts to gain insight into the organ’s physiology. The overarching theme of both the exhibit and tour was one of progress, as both of these special presentations emphasized how far we have come in terms of gathering accurate information about the human heart. Whereas the exhibit referenced the “exponential growth”[2] that the field of cardiac epidemiology has made in terms of understanding the risk and protective factors associated with heart disease, members of the Visible Heart Laboratory claimed that their research had provided unprecedented insight into the functional anatomy of the beating heart.[3] Over half a century after University of Minnesota surgeon Dr.

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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Review of Blame: A Novel

Because it is a central theme of this novel, it seems appropriate for me to start this review with my own “conflict of interest” – or as I prefer to see it, my “competing interest.” So I note that my parents and Tony’s parents were friends when we were young children and though he and I were never friends, we were colleagues in adulthood insofar as we attended the same medical/human genetics meetings and conferences and kept in touch with our separate critiques of these issues, even discussing them, when we met.

Readers, therefore, can make their own assessments of my comments about Blame as to whether or not they are “fair” or even unbiased. Readers should also know that though I have a long history of writing and publishing book reviews, both in print and online, with only one exception these have been works of non-fiction; critiquing a novel is something I vowed not to do once the first was complete, but here I am….

Enough about me; the book is what is important here, and it is an important book – especially for those who are not trained in or otherwise familiar with human/medical genetics and the range of ethical, social, legal, and political issues raised by the applications of what is learned in a lab. It is a novel of fiction and a novel of science, often eerily portraying not only what is happening now but what is possibly very soon to come as new technologies are normalized, “monetized,” and enter “ordinary” medical practice.

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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Routledge Companion to Philosophy of Medicine

Now available:  the Routledge Companion to Philosophy of Medicine.  This 48 chapter volume is a comprehensive guide to topics in the fields of epistemology and metaphysics of medicine.

PART I: GENERAL CONCEPTS
The concept of disease (Dominic Sisti and Arthur Caplan)
Disease, illness, and sickness (Bjorn Hofmann)
Health and wellbeing (Daniel Hausman)
Disability and normality (Anita Silvers)
Mechanisms in medicine (Phyllis Illari)
Causality and causal inference in medicine (Julian Reiss)
Frequency and propensity: The interpretation of probability in causal models for medicine (Donald Gillies)
Reductionism in the biomedical sciences (Holly Andersen)
Realism and constructivism in medicine (Jeremy R. Simon)

PART II: SPECIFIC CONCEPTS
Birth (Christina Schuees)
Death (Steven Luper)
Pain and suffering (Valerie Gray Hardcastle)
Measuring placebo effects (Jeremy Howick)
The concept of genetic disease (Jonathan M. Kaplan)
Diagnostic categories (Annemarie Jutel)
Classificatory challenges in psychopathology (Harold Kincaid)
Classificatory challenges in physical disease (Mathias Brochhausen)

PART III: RESEARCH MEDICINE
(a) Evidence in Medicine
The randomized controlled trial: internal and external validity (Adam La Caze)
The hierarchy of evidence, meta-analysis, and systematic review (Robyn Bluhm)
Statistical evidence and the reliability of medical research (Mattia Andreoletti & David Teira)
Bayesian versus Frequentist clinical trials (Cecilia Nardini)
Observational research (Olaf Dekkers & Jan Vandenbroucke)
Philosophy of epidemiology (Alex Broadbent)
Complementary/alternative medicine and the evidence requirement (Kirsten Hansen & Klemmens Kappel)
b. Other Research Methods
Models in medicine (Michael Wilde & Jon Williamson)
Discovery in medicine (Brendan Clarke)
Explanation in medicine (Mael Lemoine)
The case study in medicine (Rachel Ankeny)
Values in medical research (Kirstin Borgersen)
Outcome measures in medicine (Leah McClimans)
Measuring harms (Jacob Stegenga)
Expert consensus (Miriam Solomon)

PART IV: CLINICAL METHODS
Clinical judgment (Ross Upshur & Benjamin Chin-Yee)
Narrative medicine (Danielle Spencer)
Medical decision making: diagnosis, treatment, and prognosis (Ashley Graham Kennedy)

PART V: VARIABILITY AND DIVERSITY
Personalized and Precision Medicine (Alex Gamma)
Gender in Medicine (Inmaculada de Melo Martin & Kristin Intemann)
Race in Medicine (Sean Valles)
Atypical bodies in medical care (Ellen Feder)

PART VI: PERSPECTIVES
The biomedical model and the biopsychosocial model (Fred Gifford)
Models of mental illness (Jacqueline Sullivan)
Phenomenology and hermeneutics in Medicine (Havi Carel)
Evolutionary Medicine (Michael Cournoyea)
Philosophy of Nursing: caring, holism and the nursing role(s) (Mark Risjord)
Contemporary Chinese medicine and its theoretical foundations (Judith Farquhar)
Double truths and the postcolonial predicament of Chinese medicine (Eric Karchmer)
Medicine as a commodity (Carl Elliott)

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 – October 2016 by Livia Garofalo

Here is our “In the Journals” roundup for October. In addition to a rich selection of abstracts, also of interest this month are a Special Issue of Osiris on the “History of Science and Emotions” and two recent articles by Fernando Vidal on brains in literature and cinema (linked below). Enjoy!

 

Theory & Psychology 

Desire, indefinite lifespan, and transgenerational brains in literature and film

Fernando Vidal 

Even before the brain’s deterioration became a health problem of pandemic proportions, literature and film rehearsed the fiction of brain transplantations that would allow an aging person to inhabit a younger body, so that successive surgeries may result in that person’s immortality. Such fiction makes the brain operate like an immaterial soul that does not undergo physical decline. This article examines that fiction as elaborated in Hanif Kureishi’s The Body and several films in connection with older fantasies that articulate desire, eternal youth, and personal immortality, with philosophical discussions about brain and personhood, and with people’s assimilation of neuroscientific idioms into their views and practices of personal identity. In conclusion it discusses how, in contrast to philosophical approaches that tend to focus on self-consciousness, first-person perspectives, and individual autonomy, fiction may contribute to direct attention to relationality as constitutive of personhood.

SubStance 

Frankenstein’s Brain: “The Final Touch”

Fernando Vidal 

 

Critical Public Health

A critical examination of representations of context within research on population health interventions

Jean Shoveller, Sarah Viehbeck, Erica Di Ruggiero, Devon Greyson, Kim Thomson and Rodney Knight

Research that fulsomely characterizes context improves our understanding of the processes of implementation and the effectiveness of interventions to improve the health of populations and reduce health inequalities.

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.