Tag: culture

Bioethics Blogs

Research Ethics Roundup: New England Journal of Medicine Editor Wants Changes in Research Culture, Why Lab Animals Aren’t Simply “Human Stand-Ins,” Proposal for National Research Integrity Board, and FDA Approves Drugs Faster than European Medicines Agency

This week’s Research Ethics Roundup examines the New England Journal of Medicine’s (NEJM) editor-in-chief’s call for a new approach to sharing clinical trial data, how experts are trying to improve drug testing success rates by reviewing pre-clinical research assumptions, a National Academies committee’s call for a nongovernmental body to promote research integrity, and a new study that rebuts critics’ claims that the Food and Drug Administration (FDA) is slow to approve new drugs for the American market.

The post Research Ethics Roundup: New England Journal of Medicine Editor Wants Changes in Research Culture, Why Lab Animals Aren’t Simply “Human Stand-Ins,” Proposal for National Research Integrity Board, and FDA Approves Drugs Faster than European Medicines Agency appeared first on Ampersand.

Source: Ampersand, the blog of PRIM&R.

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

Research Ethics Roundup: New England Journal of Medicine Editor Wants Changes in Research Culture, Why Lab Animals Aren’t Simply “Human Stand-Ins,” Proposal for National Research Integrity Board, and FDA Approves Drugs Faster than European Medicines Agency

This week’s Research Ethics Roundup examines the New England Journal of Medicine’s (NEJM) editor-in-chief’s call for a new approach to sharing clinical trial data, how experts are trying to improve drug testing success rates by reviewing pre-clinical research assumptions, a National Academies committee’s call for a nongovernmental body to promote research integrity, and a new study that rebuts critics’ claims that the Food and Drug Administration (FDA) is slow to approve new drugs for the American market.

The post Research Ethics Roundup: New England Journal of Medicine Editor Wants Changes in Research Culture, Why Lab Animals Aren’t Simply “Human Stand-Ins,” Proposal for National Research Integrity Board, and FDA Approves Drugs Faster than European Medicines Agency appeared first on Ampersand.

Source: Ampersand, the blog of PRIM&R.

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

Teaching Medical Anthropology by Ari Gandsman

In the decade since becoming a full time professor, medical anthropology has been one of my core courses. I have taught it seven times.  Although the basic structure of the course remains similar, emphases have shifted over time. Perhaps I can best highlight the evolution of the course through a discussion of readings I use since readings are the backbone of a syllabus.  Even though I generally do not follow texts closely since I see lectures as overlapping but also supplemental and complimentary to readings, I try to mirror topics that they will be reading about, often highlighting a general theoretical literature or approach while the students read a single illustration.

Starting from the beginning, my history of medical anthropology remains the same, focusing on when “medicine” was subsumed into broad and now antiquated anthropological categories of magic and witchcraft. I never stray far from Evans-Pritchard’s Witchcraft, Oracles & Magic Among The Azande, an apparent professional contractual obligation for meAlthough I have given them the entire ethnography [the abridged in print edition] to read twice in the past, I have more lately just given them a short excerpt, often “The Notion of Witchcraft Explains Unfortunate Events.” I once also used W.H. Rivers Medicine, Magic and Religion but, although fascinating and of historic importance, it proved esoteric for an undergraduate course.  When I first started teaching, I tried to include more on non-Western medical systems, including using ethnographies on Traditional Chinese Medicine or Tibetan medicine. More recent students may be disappointed that I do not delve further into non-Western medical systems, what many students with hazy ideas of the discipline may think a medical anthropology course should almost entirely consist of.

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

Would You Want to be a Savant?

By John Banja
John Banja, PhD is a medical ethicist at Emory University’s Center for Ethics, a professor in the Department of Rehabilitation Medicine, and the editor of AJOB Neuroscience.
Darold Treffert (2010), a psychiatrist who has devoted the better part of his career to studying savants, notes that there are at least 3 kinds.
First, those who manifest the “savant syndrome” and display the most astonishing of savant abilities, such as Kim Peek who was the inspiration for Dustin Hoffman’s character, Raymond Babbitt, in the movie Rain Man. Peek, who died from a heart attack in 2009, was remarkable even by savant standards: He memorized more than 12,000 books and was able to read two pages simultaneously, one page with the right eye, the other page with the left. He also had a remarkably hospitable form of dyslexia where he could read words on a page turned sideways or upside down or backwards—such as reflected in a mirror. He could add a column of numbers from a telephone book page and instantly tell you the mean of those numbers, and he could do lightning calendar calculations like telling you which day of the week you were born upon knowing your birth date (Treffert, 2010, pp. 120-129). These were only a few of his talents. 

I might also mention Daniel Tammet who, on March 14th, 2004 on “International Pi Day”—get it?: 3.14—recited from memory Pi to 22,514 decimal places (p. 161). Or George Widener who can tell you what day of the week June 25th will be in the year 47,253 (p.

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 ethnographic case: series conclusion by Emily Yates-Doerr

Editors note: This entry concludes the series “The Ethnographic Case” which ran every other Monday between June 2015 and July 2016. The bookCase, which holds 27 cases, can be accessed here.

One day, early on in the series, we received two submissions. Their similar anatomy was striking. Each featured a medical waiting room. Someone entered the space with a gift for the clinical personnel, the gift was accepted, and something shifted in the resulting care.

In Aaron Ansell’s case, set within gardens of an informal clinic in Piauí, Brazil, the gift was a small satchel of milk. Rima Praspaliauskiene’s was set in a Lithuanian public hospital and the gift was a rich chocolate cake. Aaron, who works and teaches on legal orders, analyzed the exchange as a challenge to hospital norms of equalitarianism. He helped us to see how the give-and-take of milk interrupts the requirements of a deracinated liberal democracy, offering instead the warm sociality of personal affinity. Rima, who focuses on medical care and valuing, used the object of the cake to query the social scientist’s impulse to explain why people do what they do. She shows us how this impulse may rest upon the linearity and equivalence of rational calculation, uncomfortably treating sociality as a commodity.

The juxtaposition of these submissions is emblematic – a case, if you will – of something we have seen throughout this series: the art of ethnographic writing resides in a relation between what is there and what is done with it.

Beginnings

We might trace the origin of the series to a business meeting at the AAAs, when we offered the idea of “the ethnographic case” for a Somatosphere series.

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–March 2017, Part II by Julia Kowalski

This is Part II of March’s article round-up. You can find part I here.

In addition to the articles below, Theory, Culture and Society features an interview with Michel Foucault from 1983.

New Genetics and Society

Everything and nothing: regulating embryo research in Canada

Alana Cattapan & Dave Snow

This article examines how medical and scientific professionals experience and engage with the governance of embryo research in Canada. Drawing on the history of embryo regulation in Canada and the findings of a survey conducted with lab directors in Canadian fertility clinics, we identify a disjuncture between the rules established by legislation, regulations, and research ethics guidelines and the real-life experiences of professionals in the field. This disjuncture, we argue, is the result of both the absence of implementation mechanisms that would give substance to the governing framework, as well as an inability on the part of medical and scientific professionals to engage in robust self-regulation. Overall, we demonstrate that in an ethically charged and highly technical area of policy-making like embryonic research, clarity about the roles and responsibilities of government and professionals in policy-making and implementation is critical to effective governance.

Not just about “the science”: science education and attitudes to genetically modified foods among women in Australia

Heather J. Bray & Rachel A. Ankeny

Previous studies investigating attitudes to genetically modified (GM) foods suggest a correlation between negative attitudes and low levels of science education, both of which are associated with women. In a qualitative focus group study of Australian women with diverse levels of education, we found attitudes to GM foods were part of a complex process of making “good” food decisions, which included other factors such as locally produced, fresh/natural, healthy and nutritious, and convenient.

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

Surrogacy in the Market of Desire

The State of Florida has spilled no small quantity of ink outlining the legal confines of gestational surrogacy (see particularly sections 742.13-742.17, here).  Legally permitted gestational surrogacy in Florida does not include “bringing in and harboring aliens, sex trafficking of children, forced labor and furthering slave traffic,” however; these charges were leveled against Esthela Clark in 2015. Clark had held a Mexican woman in her one-bedroom apartment, repeatedly inseminating her with semen from Clark’s boyfriend. When the woman failed to become pregnant, she was forced to have sex with two strangers, and placed on a diet restricted to beans.  On 29 March 2017, the 47-year-old Clark from Jacksonville, FL, pled guilty to one count of forced labor. The woman had been forced to clean Clark’s apartment. (See story here.)  What happened to the issues surrounding the smuggling of the woman across the border in order to be a surrogate for Clark and her boyfriend?

On the other side of the globe, India is arguably the world’s leading provider of surrogate mothers, with the industry estimated several years ago as “likely worth $500 million to $2.3 billion.”  India legalized surrogacy in 2002, and is now considering reining in its surrogacy situation:

 

  • The Surrogacy (Regulation) Bill, 2016 was introduced by Minister of Health and Family Welfare, Mr. J. P. Nadda in Lok Sabha on November 21, 2016.  The Bill defines surrogacy as a practice where a woman gives birth to a child for an intending couple and agrees to hand over the child after the birth to the intending couple.

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–March 2017, Part I by Julia Kowalski

Here is Part I of our March article round-up.

American Anthropologist

A Dog’s Life: Suffering Humanitarianism in Port-au-Prince, Haiti

Greg Beckett

In the Bel Air neighborhood of Port-au-Prince, Haiti, most residents are dependent on humanitarian and foreign assistance for food, services, aid, and jobs. Yet, some residents feel that the conditions under which such aid is provided actively blocks their ability to live a life they find meaningful. In this article, I explore how some Haitians theorize this humanitarian condition through the figure of the dog, an animal that exemplifies, for Haitians, the deep history of violence, dehumanization, and degradation associated with foreign rule. I then contrast this with how foreign aid workers invoke the figure of the dog to illustrate their compassionate care for suffering others. Drawing on research among Bel Air residents and foreign aid workers in the years after a devastating earthquake destroyed much of Port-au-Prince, I show how the figure of the dog is central both to Haitian critiques of humanitarian aid and to the international humanitarian imaginary that responds to forms of suffering it deems cruel.

Biosocieties

“Let’s pull these technologies out of the ivory tower”: The politics, ethos, and ironies of participant-driven genomic research

Michelle L. McGowan, Suparna Choudhury, Eric T. Juengst, Marcie Lambrix, Richard A. Settersten Jr., Jennifer R. Fishman

This paper investigates how groups of ‘citizen scientists’ in non-traditional settings and primarily online networks claim to be challenging conventional genomic research processes and norms. Although these groups are highly diverse, they all distinguish their efforts from traditional university- or industry-based genomic research as being ‘participant-driven’ in one way or another.

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

Water, Health, & Social Justice

Shawn H.E. Harmon and Janice E. Graham advocate for a public interest approach to the governance of water.

__________________________________________

Earlier this month, a boil water advisory was issued for Schreiber Ontario. Such advisories are not uncommon in Canada, despite it being one of the world’s wealthiest and most developed countries. In 2015, there were over 1,838 boil water advisories, including 139 in First Nations and Inuit communities, where an estimated 20,000 Indigenous Canadians have no access to running water or sewage. Boil water advisories were placed in 29 Nova Scotia communities on 21 December 2016. On that same day, the Canadian Radio-television and Telecommunications Commission (CRTC) declared access to broadband internet a basic service. If access to the internet is critical to our economy, prosperity, and society, and to every citizen, as suggested in the CRTC decision, then water can be nothing less than an inalienable right, tied up as it is with life, health, and human flourishing.

Relevant fundamental human rights are enumerated in Articles 1-3 and 26-29 of the Universal Declaration of Human Rights (1948), and in many other legal instruments. As well, the right to “sufficient, safe, acceptable, physically accessible and affordable water” has been recognized by the United Nations Committee on Economic, Social and Cultural Rights. The European Declaration for a New Water Culture, published in 2005, encouraged a holistic approach to water that recognizes its ethical, environmental, social, economic, political, and emotional value, as well as its natural inclusion in the Heritage of the Biosphere. A subsequent 2006 United Nations Report characterized water as an essential component of security and development.

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 New Yorker features resignation syndrome

Last year I wrote a post about resignation syndrome in children in families who are denied asylum in Sweden. I described a hypothesis about the syndrome suggested by Karl Sallin, PhD student at CRB in the field of neuroethics and neurophilosophy.

An intuitive explanation is that the syndrome is a reaction to prolonged stress and depression. A reaction that is triggered when the family is denied asylum. However, if the explanation is correct, the syndrome should exist on a similar scale also in other countries that receive refugee families. It seems it does not.

To understand what happens to these children, we should, Karl Sallin suggested, see it as a psychological reaction that occurs in the meeting between certain cultures and Swedish cultural conditions. For another peculiarity is the fact that the syndrome occurs mainly in families from certain parts of the world. We are dealing with a culture bound psychopathology, Sallin proposed in Frontiers in Behavioral Neuroscience.

The New Yorker recently wrote about this “Swedish” syndrome, in a long article in which Karl Sallin interviewed.

The article contains a touching description of how one of these children falls ill when the family is denied asylum. For several months, he is confined to bed, not contactable, and he must be tube fed. When the family gets permanent residence, they try to convey this to the boy. After two weeks, he begins to open his eyes. After a further seven weeks, the nasal tube taped to his cheek falls out. Finally, he can return to school and begin to talk about the 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.