Tag: exceptionalism

Bioethics Blogs

Responsibility in the age of precision genomics

by Alexa Woodward

Alexa is a fellow in the Precision Medicine: Ethics, Policy, and Culture project through Columbia University’s Center for the Study of Social Difference. The following is her reflection on the ongoing discussion around the Precision Medicine Initiative that has been the subject of recent political, social, and popular media attention. A recent presentation by Sandra Soo-Jin Lee, PhD, from the Center for Biomedical Ethics at Stanford University spurred our multi-disciplinary discussion of some of the following themes.

What is normal, anyway?

Genetically speaking, that’s precisely the question that the Obama administration’s Precision Medicine Initiative (PMI) seeks to answer. In recruiting and collecting comprehensive genetic, medical, behavioral, and lifestyle data from one million Americans, the scientific and medical communities will be better able to understand what constitutes normal genetic variation within the population, and in turn, what amount of variation causes or contributes to disease or disease risk.[1] Using this data, researchers could potentially create tailored approaches for intervention and treatment of an incredible range of diseases.

The PMI has a secondary aim: to increase the representation of previously underrepresented populations in research – primarily African Americans and Hispanics/Latinos. Inclusion of these groups in research has been a challenge for decades, with lack of access, distrust in the medical and research systems, and institutionalized racism all playing exclusionary roles. More broadly, outside of the government initiative, the promise of precision medicine ultimately seeks to alleviate disparities by finding and addressing supposed genetic differences, and empowering people with information to take responsibility for their health.

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 – December 2016, Part I by Livia Garofalo

Here is the first part of our December article roundup. Three journals have special issues this month (abstracts in the post below):

Enjoy reading (and what’s left of the holidays)!

American Anthropologist

The Contingency of Humanitarianism: Moral Authority in an African HIV Clinic

Betsey Behr Brada

One consequence of the recent expansion of anthropological interest in humanitarianism is the seeming obviousness and conceptual stability of “humanitarianism” itself. In this article, I argue that, rather than being a stable concept and easily recognizable phenomenon, humanitarianism only becomes apparent in relation to other categories. In short, humanitarianism is contingent: it depends on circumstance and varies from one context to another. Furthermore, its perceptibility rests on individuals’ capacity to mobilize categorical similarities and distinctions. One cannot call a thing or person “humanitarian” without denying the humanitarian character of someone or something else. Drawing on research conducted in clinical spaces where Botswana’s national HIV treatment program and private US institutions overlapped, I examine the processes by which individuals claimed people, spaces, and practices as humanitarian, the contrasts they drew to make these claims, and the moral positions they attempted to occupy in the process. More than questions of mere terminology, these processes of categorization and contradistinction serve as crucibles for the larger struggles over sovereignty, inequality, and the legacies of colonialism that haunt US-driven global health interventions.

Scripting Dissent: US Abortion Laws, State Power, and the Politics of Scripted Speech

Mara Buchbinder

Abortion laws offer a point of entry for “the state” to intervene in intimate clinical matters.

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

On Deanthropologizing Anthropology — An Essay on Tarek Elhaik’s “The Incurable Image” by Tobias Rees

“Are cultural anthropologists ready to shed their habit of using society and culture? (…) No, I don’t feel so. (…) It seems to me that many anthropologists wish to keep the human (…). There is a tricky problem here: concentrating around the human could mean either maintaining this character apart from other entities — the former beings of ‘nature’ defining by contrast what could be called the ‘humanistic’ position —, or it could mean accepting that, as soon as you take the human into consideration, it is suddenly redistributed (not disintegrated, that’s the whole point, but redistributed) in many other roles and connections that make its earlier figurations unrecognizable.”

Bruno Latour

 

1.

Could one deanthropologize anthropology? Is it possible to differentiate anthropology, science of the human, from the figure of ‘Man’ as it emerged in the 18th century and made anthropology possible (Foucault 1966)?

At first these questions may sound bizarre — and an anthropology journal an odd choice for asking them. However, the will to leave the human behind is a prominent feature of what one could call contemporary anthropologies of nature. The reference here is largely to the so-called ontological turn (for reviews see Kohn 2015; Boellstorff 2016) and multi-species anthropology (Helmreich and Kirksey 2010; Kirksey 2014).[1]

 

2.

Admittedly, I find the writings of the multi-species anthropologists and the ontologists — the two groups are best kept separate, precisely insofar as many of the former are not actually ontologists at all — hugely fascinating: I find myself intrigued by the effort to break free from ‘the human.’

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

Top of the Heap: Adia Benton by Hannah Gibson

For this installment of Top of the Heap, I was delighted to work with Assistant Professor Adia Benton from Northwestern University.

I think it’s probably common for people to talk about how large their book heap is. Mine is no different. I’m at the end of my sabbatical and the beginning of my maternity leave. The former should have left me ample time to read, the latter… not so much. I am juggling a couple of book projects right now, so the books I have at the top of the pile reflect those interests and the ideas spinning off from them. The ones that continue to rise to the top are On Being Included, by Sara Ahmed. The book is about diversity initiatives in a university setting. In addition to being a useful account of these efforts at a time when these conversations are taking place in academia, I see this book as potentially offering lessons about how institutions “think”, how they issue documents and propose non-solutions to those problems. Expected Miracles, by Joan Cassell, is an older book. It’s still relevant in that it describes the culture of surgery in US hospitals and many of its insights still ring true for the surgeons I know. Habeas Viscus, by Alexander Weheliye, is a slim and dense book that provides a much needed corrective to accounts of biopolitics and bare life that are insufficiently attentive to race.

I’m almost done with Randy Packard’s A History of Global Health. Packard lays out a straightforward account of why, at different points in time, international health and colonial public health largely focused on disease-specific programs, rather than on the social determinants of health.

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

Tarek Elhaik’s The Incurable Image: Curating Post-Mexican Film and Media Arts by Christopher Fraga

The Incurable-Image: Curating Post-Mexican Film and Media Arts

by Tarek Elhaik

Edinburgh University Press, 2016, 198 pages

 

Tarek Elhaik’s first book—an ethnographic examination of multi-media artists, curators, and fellow anthropologists loosely centered around Mexico City—is a bold, highly theoretical effort to revive something of the experimental ethos of Writing Culture (Clifford and Marcus 1986) and the works that followed in its wake. Rather than experiment with textual form, however, Elhaik seeks to formulate a new vocation for contemporary anthropology, one that is both “critical and clinical.” Drawing liberally on the vitalist philosophy of Gilles Deleuze, Elhaik aspires to reconceptualize anthropology as a kind of “symptomatology”: that is, as a means of diagnosing cultural ailments and of identifying pathways to other, more salubrious “forms of life.”[1] The Incurable-Image consists of a collection of interconnected essays that identify the symptoms of a “post-Mexican condition” (Bartra 1992, 2002) before drawing lessons from contemporary efforts to “curate” it. Medical anthropologists and scholars working in science and technology studies will find here a complex reconceptualization of film and media arts as twenty-first-century forms of care.

The 1980s saw Mexico grow increasingly permeable to transnational flows of capital in its various forms, a cultural and economic process that reached a new plateau in the mid-1990s with Mexico’s participation in NAFTA. This new permeability was accompanied by the country’s so-called “transition to democracy” after the single-party rule of the Institutional Revolutionary Party was fundamentally (albeit not irrevocably) shaken.[2] Together, these political and economic developments posed an insuperable contradiction to nationalist narratives of Mexican exceptionalism, deeply undermining the unitary national identity that had been forged in the early twentieth century by a coalition of politicians, artists, filmmakers and anthropologists.

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

Evil on its Face

In June of this year, a group of ethicists—should I say that I use that term loosely?—issued a “consensus statement” to guide legislation and institutional policy regarding conscientious objection in medicine.  Conscientious objection, they explained, “is the refusal to provide a certain medical service, for example an abortion or medical assistance in dying, because it conflicts with the practitioner’s moral views.”  Their words, not mine.

They went on to aver that the general medical principle that the care of the patient is paramount, taking priority over the practitioner’s “moral or religious views.”  Not that the practitioner must efface his or her self-interest for the sake of the patient’s best interest, pace Dr. Pellegrino, but that moral arguments must take a back seat to “a patient’s desire for a legal, professionally sanctioned medical service.”  So, in other words, if the law and the powers that be determine that something is permitted within the bounds of medical practice, all practitioners must submit to that.  If they object to, for example, participating in euthanasia when the legislature has deemed this permissible, they must state their reasons—including going before a “tribunal,” if necessary—and refer for the service or perform it themselves if no referral is available.  Punishments are in order: “Healthcare practitioners who are exempted from performing certain medical procedures on conscientious grounds should be required to compensate society and the health system for their failure to fulfill their professional obligations by providing public-benefitting services.”  I’m not sure whether “by providing public-benefitting services” is intended to modify “compensate” here—that is, the punishment should be community service of some unspecified sort—or to modify “obligations”—that is, construing doctor-assisted suicide and abortion as primary public goods and medical duties.

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

“As Americans, We Grieve”: Mass Shootings & Collective Trauma by Elle Nurmi

“As Americans, we grieve…”[1]

Mass shootings in contemporary American society have emerged as events of profound political and cultural symbolism; indeed, the news media has often attributed to them the label of “crisis.”[2] They have a singular status in the modern American collective consciousness, one not occupied by other forms of violence. Mass shootings have attained this status, I argue, precisely because their violence transcends the immediate act itself; they are threefold acts of violence, enacted on the bodies of their victims, the minds of their witnesses (both first and secondhand), and society collectively. Through the elaborate national discourse that has been constructed around them, mass shootings have emerged as attacks on society as a whole – mass violence in the most literal of senses. Individuals become witnesses and are thus implicated in the trauma of the event; simultaneously, their personal grief is transformed into collective pain. There are four key drivers that enable this threefold victimization: first, the sense that mass shootings represent a narrative rupture; second, the personalization of a collective anxiety tracing back to 9/11; third, the modern idiom of trauma, which provides a new lens through which to understand and justify the grief reaction; and fourth, the development of new normative grief rituals, performed through social media, which serve to create a shared trauma narrative and to allow individuals to affirm their group membership and community identity in a time of flux and fragility.

Mass shootings are felt as powerfully disruptive of the everyday; they are an inappropriate disruption of not only the “contingent, unremarkable and ordinary” stream of everyday life, but also the normatively coherent, telic narrative of individual and collective life.

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

Interview: Dissecting the age of ‘do harm’ medicine

Wesley J. Smith is one of America’s leading commentators on bioethical issues, especially assisted suicide and euthanasia. His columns are published in the National Review and he is the author of 14 books. BioEdge interviewed him about his latest, Culture of Death: The Age of “Do Harm” Medicine.

*****

BioEdge: This is a thoroughly revised edition of a book you published 16 years ago. In your view, is there less respect for life in American medical culture now? Are there any bright spots?

Wesley J. Smith: There is less respect for human equality and the sanctity of life in healthcare generally, I fear, and not only in the U.S. Indeed, I changed the subtitle of the book to “The Age of ‘Do Harm’ Medicine” because it now grapples with developments outside the United States as well as in my own country. We are all connected, so that what happens in Canada impacts Australia, what happens in the USA can have a pull on South Africa.

I have observed in the 15 years since the first edition of Culture of Death, that throughout the developed world and the West we see a terrible and increasing disrespect for the intrinsic value of the most weak and vulnerable among us. Euthanasia has spread like a stain and grown increasingly toxic. For example, in Belgium medicalized killing is now coupled with organ harvesting—including of the mentally ill. Health care rationing, which is blatant and invidious medical discrimination, is a growing threat. Advocacy continues to discard the dead donor rule in organ transplant medicine, even proposals for the live-harvesting of patients with profound cognitive disabilities.

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

Doctors Push the PAS Envelope

Over at his “Human Exceptionalism” blog, Wesley Smith has had a steady stream of recent posts about physician-assisted suicide (PAS), also called “physician-aid-in-dying” or “medical-aid-in-dying” (MAID).  “Hat tip” to Mr. Smith for the story that introduced me to the “MAID” acronym.  It is reported that Ontario’s College of Physicians and Surgeons think that the proposed law being considered by the Canadian federal government to allow… // Read More »

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 Enclosed Case by Elizabeth Lewis

The case that follows illustrates an ethnographic flashpoint in my work on disability. Here, I offer an account of a single morning during my first research trip in Central America. The day marked my only visit to a particularly well-known institution (or shelter) for children and adults with disabilities. The following summer, I would learn that the scenes depicted below were not necessarily representative of other shelters in the country.

Still, several years later, this particular case – this single morning – continues to shape my thinking on the making and unmaking of disability personhood in everyday life. I use it not to highlight the plight of an individual or probe the lived experience of disability in certain economic and sociopolitical contexts. Rather, I approach it as the first of several encounters that prompted me to examine my preconceptions of disability outliers – cases that originally struck me as so extreme they couldn’t possibly happen closer to home, back in the U.S. People kept in closets? Surely not. Children abandoned to live in nursing homes? Impossible. A suspicion that disability was contagious? Come on. Having spent my entire life immersed in the disability community, whether personally, as an ally, or through my research, I naively assumed that I knew better.

Yet I heard such stories again and again as I moved forward with my work on family experiences with rare and undiagnosed disabilities, those confusing puzzles of sensory, physical, and intellectual difference that do not correspond to a clear label – the bodies that fall outside of diagnostic common sense.

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.