Tag: hiv/aids

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The Future of Bioethics: Organ Transplantation, Genetic Testing, and Euthanasia

By Ana Lita

When you think of bioethics, some of the first hot-button topics you may consider are organ transplantation, fertility and genetic engineering, and end-of-life-care. The Global Bioethics Initiative serves as a platform to address many bioethical questions and engages in public debates to develop resolutions to present and emerging issues.

Dr. Ana Lita, founder of the Global Bioethics Initiative, discusses the various areas GBI addresses and highlights the organization’s contributors in their prospective fields. She acknowledges the valuable contribution of the current president of GBI, Dr. Bruce Gelb, in the field of organ transplantation. She also addresses the original co-founder of GBI, Dr. Charles Debrovner, and his lifelong passion in the field of fertility and genetic engineering. Lastly, Dr. Lita offers a brief insight into the future of Bioethics in these uncertain times.

ORGAN MARKETS AND THE ETHICS OF TRANSPLANTATION 

Recent developments in immunosuppressive drugs and improved surgical techniques have now made it much easier to successfully transplant organs from one human body to another. Unfortunately, these developments have led to the rise of black-markets in human organs. This underground market is where people who need kidneys to survive or to improve the quality of their lives, for example, purchasing such organs from impoverished persons in the developing world. In January 2017, scientists announced that they successfully created the first human-pig hybrid and a pig embryo with some human characteristics. Given the increasing need for transplant organs, should such markets be regulated and legalized?  Could the success of therapeutic cloning eliminate the need to consider this option?

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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Leadership. Commitment. Hype.

Today is World AIDS Day. It is, in fact, the 29th annual World AIDS Day, which is held every year on December 1st to honor the 35 million people who have died from the disease and to support the 40 million who currently live with HIV/AIDS. The theme for this year’s event, at least according to the US federal government? “Leadership. Commitment. Impact.” Yet support for HIV prevention and treatment efforts has been slipping for years. Will our newly-elected politicians show true leadership and commitment to the fight against HIV/AIDS? Or will it be the usual self-serving and ideologically-motivated efforts to promote themselves and enrich their donors? If so, will the hard-won gains that we’ve made since HIV was first discovered soon be lost?

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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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Lenore Manderson, Elizabeth Cartwright and Anita Hardon’s The Routledge Handbook of Medical Anthropology by Casey Golomski

The Routledge Handbook of Medical Anthropology

Edited by Lenore Manderson, Elizabeth Cartwright and Anita Hardon

Routledge, 2016, 393 pages.

 

This is not a run-of-the-mill medical anthropology reader. Thank Routledge, its editors, and contributors for it. As someone who regularly convenes intermediate-advanced courses in medical anthropology, I’m grateful for its readability, teachable qualities, and particular theoretical angles. I’m going to trace four areas where I think the new Routledge Handbook of Medical Anthropology is innovative among the current offerings of similar edited volumes on the market for our discipline.

 

Visual innovation :: contextualized photographic figures

Recently, there’s been hot and necessary discussion about the images used for anthropology book covers: Tunstall and Esperanza (2016) over at Savage Minds provide interesting practical guidelines for book cover image selection as a way to decolonize anthropology. Ethnographies of medicine, suffering, and war with nuanced photographic figures of belabored people arguably make these books more compelling and help them win awards (De Leòn with Wells 2015, Biehl with Eskerod 2007, 2013), and also raise ethical questions about the images we choose to give life to our writing. The Routledge Handbook contains 16 photographic figures, taken by both contributors and others selected from a global Internet-based call-for-submissions in 2015, each placed as a ‘prelude’ (xii) to its respective chapter. A thoughtful, roughly 150-175 word description by the photographer accompanies each figure, giving it fuller context beyond the usual one sentence caption.

I appreciate projects that aim to decolonize higher education, the academy and our respective discipline, and find Tunstall and Esperanza’s approach insightful.

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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Biofinance: Speculation, Risk, Debt, and Value from Bios: A conference report by Danya Glabau

How does the financialization of life itself figure as a new means of producing value in modern technoscience? That is the question that motivated Kirk Fiereck to convene the panel “Biofinance: Speculation, Risk, Debt, and Value from Bios” at the 2016 American Anthropological Association meeting in Minneapolis, Minnesota this November. Fiereck, panelists Melina Sherman, Danya Glabau, and Emily Xi Lin, discussant Kristin Peterson, and chair David Pederson, offered new ways to think about how financialized life is a source of value, and what this means for the ethics and practice of biomedicine in sites throughout the globe.

In writing this conference report, Fiereck, Sherman, and Glabau each contributed short comments about their talks, which were edited together in the unified first half of this report. The second half includes further reflections that we have attributed to each scholar individually as a way to illustrate the diverse, possibly divergent, uses of “biofinance” as a concept.

 

The Papers

Melina Sherman opened the panel with, “Biofinancial Investments and Disinvestments: Examining the U.S. Opioid Epidemic,” which focused on the cultural and institutional construction of pharmaceutical markets – in particular, the market for prescription painkillers. Markets, especially those situated within the bioeconomy – an economic space in which capital is organized through life (bios) in its various forms – constitute the broader context in which biofinancial practices are situated. Her paper explored the ways in which the selective investments and divestments of federal regulators and opioid consumers condition the growth of this market. The market for prescription opioids is a good example of what Sherman calls an “addiction market” (see also Lovell, 2006), where addiction (understood as a destructive attachment – in this case, of a person to a prescription drug) is built-in to the cultural and economic processes that drive market formation and growth.

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 – January 2017 by Anna Zogas

Welcome to a new year of Somatosphere’s In the Journals section! Here are some of the articles available in January 2017. Enjoy!

Medical Anthropology

Chronic Subjunctivity, or, How Physicians Use Diabetes and Insomnia to Manage Futures in the United States
Matthew Wolf-Meyer & Celina Callahan-Kapoor

Prognostication has become central to medical practice, offering clinicians and patients views of particular futures enabled by biomedical expertise and technologies. Drawing on research on diabetes care and sleep medicine in the United States, in this article we suggest that subjectivity is increasingly modeled on medical understandings of chronic illness. These chronic conceptions of the self and society instill in individuals an anxiety about future health outcomes that, in turn, motivate practices oriented at self-care to avoid negative health outcomes and particular medical futures. At its most extreme, these anxieties of self-care trouble conceptions of self and social belonging, particularly in the future tense, leading patients and clinicians to consider intergenerational and public health based on the threats that individual patients pose for others.

Decoding the Type 2 Diabetes Epidemic in Rural India (open access)
Matthew Little, Sally Humphries, Kirit Patel & Cate Dewey

Type 2 diabetes mellitus is an escalating public health problem in India, associated with genetic susceptibility, dietary shift, and rapid lifestyle changes. Historically a disease of the urban elite, quantitative studies have recently confirmed rising prevalence rates among marginalized populations in rural India. To analyze the role of cultural and sociopolitical factors in diabetes onset and management, we employed in-depth interviews and focus groups within a rural community of Tamil Nadu.

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 – December 2016, Part II by Anna Zogas

Here is the second part of our article roundup for December (find the first set of articles here). Happy reading, and happy new year!

New Genetics and Society

Redrawing the boundary of medical expertise: medically assisted reproduction and the debate on Italian bioconstitutionalism
Volha Parfenchyk

In 2004, the Italian Parliament passed a controversial law on medically assisted reproduction (Law 40/2004). The Law obliged clinicians to create a maximum of three embryos during one in vitro fertilization (IVF) cycle and transfer them simultaneously into the patient’s uterus. With this “three embryo” standard, the Parliament sought to secure the realization of rights of IVF embryos. Drawing on the concepts of boundary-work and bioconstitutionalism, this article explores the role that the constitutional obligations of the Italian State towards its citizens, including IVF embryos as its new “citizen subjects,” played in how it envisaged and demarcated the professional boundaries of medical expertise. It argues that the latter depended upon how it balanced its commitments to protect the rights of IVF embryos and those of adult citizens. As such, the demarcation of the jurisdictional boundaries of medical expertise, and the definition of constitutional rights, formed two sides of the same governing project.

Traveling questions: uncertainty and nonknowledge as vehicles of translation in genetic research participation
Klaus Hoeyer

In this paper, I argue that uncertainty and nonknowledge, and not just research results, can be important vehicles of translation through which genetic research participation comes to affect the lives of research participants. Based on interviews with participants in a genetic research project, I outline epistemic, emotional, relational and moral implications of research participation.

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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BioethicsTV (November 2016) Continued: Further commentary on Informed Consent

by Abhi Amarnani

Chicago Med (Season 2, Episode 8, 11/10/16).

A December 1st BIOETHICSTV blog post briefly mentioned, Season 2, Episode 8 of Chicago Med. The post notes that the episode dealt with the issues of informed consent in brief. I felt that a more in-depth discussion of these issues was warranted. Consider the storylines in the episode: A young girl with a developmental disorder needs cardiac surgery. Her condition forces her mother to question whether the girl can make decisions for surgery. Second, Nurse April was coughing at the end of episode 7, and viewers learned that she is diagnosed with multidrug resistant tuberculosis (TB). Adding to this challenge is a confirmation of pregnancy. Her colleagues question her personal autonomy when she considers refusing treatment. Third, a patient dying from kidney disease is not allowed by hospital policy and law to accept a transplant from his HIV+ brother. The message is that death from organ failure is preferable to a longer life with HIV. By the end of the episode, Dr. Manning leaves a syringe on the table stating: “If you already had HIV, the procedure would be legal,” insinuating a workaround – that if the patient infects himself with his brother’s blood, then the transplant can happen. The donor and recipient acknowledge fully informed consent that receiving an HIV positive organ will infect him, but here the informed consent consideration comes up against the “do no harm” principle of medicine and United Network for Organ Sharing (UNOS) policy.

In the first storyline, a friendly, bubbly and trusting teenage girl, Karina, enters the hospital with cardiac issues.

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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Book Forum – Hervé Guibert’s Cytomegalovirus: A Hospitalization Diary by Eugene Raikhel

A quarter-century after it was written, Hervé Guibert’s Cytomegalovirus reads both as a vital document of a particular moment in the history of the HIV/AIDS epidemic and as a wonderfully spare account of the banal humiliations and little triumphs of hospitalization in the shadow of a then-terminal illness.  Republished with a luminous Introduction by David Caron and a wide-ranging and erudite Afterword by Todd Meyers, this slim volume is by turns poignant, humorous, and startling. We are very pleased to bring you a set of commentaries on Cytomegalovirus.

Catherine Belling
Northwestern University, Feinberg School of Medicine

Thomas Cousins
Stellenbosch University

Lukas Engelmann
CRASSH

Amy Moran-Thomas
MIT

Download it on Scribd (pdf):

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.