Tag: genocide

Bioethics Blogs

Teaching Disability Studies in the Era of Trump by Pamela Block

In spring semester of 2017 we (Pam Block and Michele Friedner) co-taught the graduate course “Conceptual Foundations of Disability Studies.” Though the readings were the same as in previous iterations of the course, the emphasis and tone of the class shifted, not just because of the co-teaching but because we were now teaching in a context in which the rights and lives of disabled people are at increased risk. This essay will focus on one class session devoted to a discussion of how disability studies and eugenics are strikingly intertwined in some ways, and why it is salient and important to think about eugenics in the present moment, especially in relation to the current United States presidency.

Eugenics opens up a way to talk about immigration; traits and qualities of and in people; desirability; deservedness; “good” and “bad” science; and the making of facts. Eugenics comes to mind when we think of silencing and containing nasty women and ejecting bad hombres. While we are not arguing that Trump himself advocates eugenics, we argue that a study of the history of eugenics offers an entry point to considering the emergence of past and present norms and normals, especially in relation to perspectives on bodily variation. We also think that a discussion of eugenics affords different ways of conceptualizing what disability studies scholars Snyder and Mitchell (2010) call “able-nationalism,” (riffing off of Puar’s (2007) work on homonationalism). That is, a discussion of eugenics allows for consideration of how disability—and the values attached to it– is mobilized in different time periods, in the service to the nation.

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

Confronting Medicine in the Holocaust & Beyond

By Hedy S. Wald

Galilee, Israel, May 7-11, 2017. I was privileged to be at the Second International Scholars Workshop on “Medicine in the Holocaust and Beyond.” Why so meaningful?  Why so needed? 140 purposeful, passionate scholars from 17 countries delved into the past history of medicine at its worst in order to inform the future.  From 1933-1945, presumed healers within mainstream medicine (sworn to uphold the Hippocratic Oath) turned into killers (1).  Yes, medical ethics in Nazi-era medical school curricula existed, yet included “unequal worth of human beings, authoritative role of the physician, and priority of public health over individual-patient care”(2).  In Western Galilee College, (Akko), Bar-Ilan University Faculty of Health Sciences (Safed), and Galilee Medical Center and Ghetto Fighters’ Museum, (both in Nahariya), historians, physicians, nurses, medical and university educators, medical students, ethicists and more gathered to grapple with this history and consider how learning about medicine in the Holocaust can support healthy professional identity formation with a moral compass for navigating the future of medical practice with issues such as prejudice, assisted reproduction and suicide, resource allocation, obtaining valid informed consent, and challenges of genomics and technology expansion (3)…

The conference, in essence, served as a lens for the here and now, reinforcing my contention (and others’) that history of medicine in the Holocaust curricula including confronting the Nazi physicians’ and scientific establishment’s euthanasia of “lives unworthy of life,” forced sterilizations, horrific experimentation on their victims, and medicalized genocide (leading to the destruction of a third of the European Jewish population and many others) is a “moral imperative” in healthcare professions education (1,4).

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

Will curing the deaf lead to ‘cultural genocide’?

It is estimated that half of the world’s estimated 7,000 languages are in danger of disappearing. Under pressure from dominant languages to assimilate, linguistic communities shrink, wither and disappear. Every fortnight, the last fluent speaker of a language dies, according to some experts.

People who use sign language fear that this could happen to them. Some theorists of deafness argue that the Deaf are a distinct ethnic group, not a group of disabled individuals. So Deaf English speakers fear that the rapid progress of genetic editing could kill their community and their language as well.

Writing in the Impact Ethics blog, Teresa Blankmeyer Burke worries that gene therapy for hereditary deafness threatens the rich world of the Deaf and could even be described as cultural genocide.

The argument goes like this: the use of gene therapy to cure hereditary deafness would result in smaller numbers of deaf children. This, in turn, would reduce the critical mass of signing Deaf people needed for a flourishing community, ultimately resulting in the demise of the community.

Part of the problem is that the advantages of being a member of the Deaf community are far from obvious to the dominant culture which is not hearing-impaired. As she has pointed out:

What gets overlooked is the issue of human flourishing. What should be asked is whether the experience of being a full-fledged member of the signing Deaf community constitutes a kind of human flourishing that ought to continue to be a way of life for deaf people …

Full access to a language ought to be a right for all persons possessing the capacity for language.

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

Gene Therapy: A Threat to the Deaf Community?

Teresa Blankmeyer Burke considers the problematic nature of gene therapy research aimed at eliminating hereditary deafness.

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Typically, gene therapy involves combining a therapeutic gene with a vehicle known as a viral vector. This vector is used to deliver the therapeutic gene into a target cell by a process known as transduction. In the case of the inner ear, there is a low transduction efficiency in sensory cells using such viral vectors, including the vector known as AAV1. As a result, there has been variable and inefficient uptake of therapeutic genes.

A recent study in mice, however, published in the journal Molecular Therapy, describes a new method for delivering genes to the sensory hair cells of the inner ear as a potential treatment for deafness. This research describes a new type of viral vector, exo-AAV1, which is more efficient than AAV1 and which may be an effective viral vector for delivering therapeutic genes to treat hereditary deafness by gene therapy.

The use of exosome-associated viruses raises important questions about risks (and unwanted side-effects). There is, for example, the risk of transferring genes that might facilitate the spread of disease through the delivery of genetic material and/or pathogenic proteins. These risks, while important, are not as pressing, however, as the larger issue of whether researchers should conduct research that threatens to eradicate a community.

Members of the signing Deaf community argue that research which aims to eliminate or cure deafness is a form of cultural genocide. The argument goes like this: the use of gene therapy to cure hereditary deafness would result in smaller numbers of deaf children.

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

Medicine and the Holocaust in Medical Education: International Holocaust Remembrance Day – January 27

By Hedy S. Wald

“Medicine was used for villainous ends during the Holocaust.  The Holocaust was an enormous trauma inflicted on human dignity and the human person; medicine was implicated in crimes against humanity.”  His Eminence Daniel Cardinal DiNardo, Archbishop of Galveston-Houston.1

January 27 is International Holocaust Remembrance Day, a day designated by the United Nations General Assembly resolution 60/7 in 2005 after a special session marking the 60th anniversary of the liberation of the Nazi concentration camps and the end of the Holocaust. In the words of Secretary General Ban-Ki Moon (2008), “The International Day in memory of the victims of the Holocaust is a day on which we must reassert our commitment to human rights… We must also go beyond remembrance, and make sure that new generations know this history.  We must apply the lessons of the Holocaust to today’s world.”2

Indeed.  A recent medical humanities article (co-authored with my colleagues Drs. Rubenfeld and Fins)1 was a resounding call for teaching lessons of the Holocaust within medical education.  We joined others in the medical education/bioethics community calling for a curriculum that would create space for a mix of reflective practice and historical awareness to grapple with the medical profession’s central role in “using science to help legitimize persecution, murder and ultimately genocide.”3

“Almost every aspect of contemporary medical ethics is influenced by the history of physician involvement in the Holocaust,” Wynia and colleagues wrote.1  The United States Holocaust Memorial Museum’s (USHMM) “Deadly Medicine: Creating the Master Race” exhibit3 documents the moral failures of individual physicians and the medical establishment during the Third Reich including participation in horrific experimentation and medicalized genocide. 

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

Process or End Goal: When to Begin Genocide Prevention

Via NYPL Collections

STUDENT VOICES

By: Megan Gray

This essay is in response to the Carnegie Council for Ethics in International Affairs video clip “When to Begin Genocide Prevention.”  

In the Carnegie Council video, “When to Begin Genocide Prevention,” led by Tibi Galis from the Auschwitz Institute for Peace and Reconciliation, Galis discusses the process and end goals of seeking to prevent genocide today, in relation to its origins in Nazi Germany. He begins by stating that “genocide is not only the moment when people are killed; it’s also the moment, if we take, for example, the Holocaust, when people had to wear a star to identify them as being Jewish. That has already set in place the dynamics that were necessary for achieving the killing at a later stage.” Galis expresses that both the process and end goal of understanding and achieving the prevention of genocide are equally important, and that if the end goal is to stop the mass killings, it will not simply come from preparing and taking action once the killings have begun. He emphasizes that preventative action needs must take place before the issue arises in order to prevent tragedies such as genocide from starting in the first place.

As Galis continues to discuss this notion, he brings into the bigger picture the comparison of the U.S. military to that of genocide prevention. He gives us the example of instances in which the military has been sent on missions to end violence in other parts of the world once killing has begun.

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

A Transplant Conference Play Host to China, and Its Surgeons Accused of Killing

August 3, 2016

(The Epoch Times) – Instead, when The Transplantation Society (TTS) holds its biennial conference in Hong Kong this August, China will be the star. In sessions like “The New Era of Organ Transplantation in China” and “Transplantation Reform in China,” Chinese officials will have the opportunity to tell thousands of medical professionals at the industry’s foremost gathering that they have thoroughly reformed their system, basking in renewed global standing and legitimacy without having passed a single new law. And without a single doctor or official held account for what has been described a genocide.

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 July 2016 – Pt. I by Christine Sargent

Check out the first instalment of this month’s In the Journals!

 

Critical public health 

Global mental health and its critics: moving beyond the impasse (open access)

Sara Cooper

The field of Global Mental Health has very quickly engendered a new institutional and research landscape, having recently established a number of its own research centres and training programmes. Under the banner of this field, there has also been an explosion of international research programmes and interventions which have received significant financial backing from a range of international donors, development agencies, and governments.1 In sum, Global Mental Health has increasingly captured the imagination of a wide range of stakeholders and has made major strides in establishing mental health as a priority within the global health arena. Indeed, a recent Google search for ‘Global Mental Health’ on 1 November 2009 identified approximately 62,300 related sites, of which over 85% of them were registered since 2008 (Patel & Prince,2010). This increasingly powerful field has, however, also elicited a range of critical responses, with growing controversy over its conceptualisations, goals and imagined outcomes (Campbell & Burgess, 2012; Kirmayer & Pedersen, 2014; Mills & Fernando, 2014).

Stigmatizing surveillance: blood-borne pathogen protocol and the dangerous doctor

Valerie Webber, Janet Bartlett & Fern Brunger

HIV and hepatitis B and C are viruses that have been unduly set apart from other infectious diseases in terms of the symbolic pull they exert and the anxiety they produce. This is reflected in health care policy and protocol. Hospitals, health care regions and colleges of physicians and surgeons create guidelines and procedures that single out HIV or hepatitis B and C as requiring special attention.

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

When Risk, Doubt, and Difference Converge: A Review Essay by Elizabeth Lewis

On Immunity: An Inoculation
By Eula Biss
Graywolf Press, 2014, 205 pp.

The End of Normal: Identity in a Biocultural Era
By Lennard J. Davis
University of Michigan Press, 2013, 155 pp.

Autism and Gender: From Refrigerator Mothers to Computer Geeks
By Jordynn Jack
University of Illinois Press, 2014, 306 pp.

 

Disability themes have become an increasingly central figure in the media, popular culture, and everyday life. Rates of disability diagnosis have risen sharply among children in the U.S. in the past decade. Disability has exploded in the popular press in such acclaimed recent books as Steve Silberman’s Neurotribes: The Legacy of Autism and the Future of Neurodiversity, Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity, Akhil Sharma’s Family Life, and Lisa Genova’s Still Alice. Similarly, scholarship on disability has gained new momentum. Somatosphere’s Inhabitable Worlds series, edited by Michele Friedner and Emily Cohen, featured cutting-edge writings on the study of disability within the social sciences, and the program for the 2015 American Anthropological Association’s annual meeting included over 50 papers, panels, and posters on disability themes. Without question, disability has emerged from the margins of scholarship and public interest.

Three recent books – Eula Biss’ On Immunity: An Inoculation, Lennard Davis’ The End of Normal: Identity in a Biocultural Era, and Jordynn Jack’s Autism and Gender: From Refrigerator Mothers to Computer Geeks – make important insights regarding the contours and textures of disability in the contemporary U.S. Biss, an essayist and social critic, offers a fascinating analysis of the persistent anxiety surrounding childhood vaccinations, particularly among a vocal minority of parents who oppose vaccines entirely.

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

Fordham Panel to Address Questions about Human Rights in Age of Fear, Violence and Scarce Resources 

By: Michael Aprea       

Few realities have shaken the foundation of human rights and the inherent liberties viewed common to all as profoundly as fear. Human rights, the set of rights believed to be intrinsic to the human person, are the cornerstone of modern society. They are the very building blocks of our nation and of the free world.

On April 5th, the Fordham Center for Religion and Culture and the Fordham Center for Ethics Education will hold an interdisciplinary forum to address questions about the endurance of human rights in the wake of society’s struggle to maintain both justice and compassion in world torn by violence, injustice, hatred and limited resources. This symposium, titled “In Good Conscience: Human Rights in an age of Terrorism, Violence, and Limited Resources,” will feature distinguished speakers:

Ivan Šimonović: Assistant Secretary-General, United Nations Office of the High Commissioner for Human Rights

Consolee Nishimwe: Rwandan genocide survivor and author of Tested to the Limit: A Genocide Survivor’s Story of Pain, Resilience, and Hope.

Celia B. Fisher, PhD: Marie Ward Doty University Endowed Chair and Professor of Psychology, Director Center for Ethics Education, Fordham University

Matthew C. Waxman: Liviu Librescu Professor of Law; Faculty Chair, Roger Hertog Program on Law and National Security, Columbia University

Andrea Bartoli, PhD: Dean of the School of Diplomacy and International Relations at Seton Hall University

The panel will address questions at the core of human rights. Historically, through an undertone of fear, rhetoric has been a call to see the other not as human with needs and rights common to self; rather fear has been manipulated to shape the other into a threat to one’s own needs and rights.

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.