Medical Humanities Blog

On (Feminist) Disability Bioethics

The International Journal of Feminist Approaches to Bioethics has a theme issue (vol. 3, no. 2) out on "Disability Studies in Feminist Bioethics."  The TOC is available here, and the issue is chock-a-block with fascinating, insightful reading.  In particular, take a look at Margaret P. Wardlaw's* article entitled The Right-to-Die Exception: How the Discourse of Individual Rights Impoverishes Bioethical Discussions of Disability and What We Can do About it.

Here is the Abstract:

Major considerations of disability studies—such as provision of care, accommodation for disabled people, and issues surrounding institutionalization—have been consistently marginalized in American bioethical discourse. The right to die, however, stands out as a paradigmatic bioethical debate. Why do advocates for expanding the volition and self-direction of disabled people emerge from the periphery only to help those disabled people who choose death? And why do the majority of people assume an unrealistically low quality of life for those with disabilities? This paper will argue that the dominance of the Western liberal tradition in American culture motivates both these phenomena: by emphasizing individual rights over duties and responsibilities, assuming the isolated and independent rights-bearer as the prototypical person, and evoking an unrealistically atomistic view of human interaction. As an alternative, I offer a framework rooted in feminist ethics that emphasizes context, gives moral weight to human relationships, abandons the problematic ideal of a lone rights-bearer, and emphasizes the mutual vulnerability of embodied individuals.

I am so pleased to see such challenges to dominant individualist conventions in American bioethics, and both feminist and disability lenses provide particularly helpful vantage points for unpacking the weaknesses of what Charles Taylor refers to as "methodological individualism."  If Wardlaw's topic interests readers, also check out Paul Longmore's powerful article, cited here, entitled Policy, Prejudice, and Reality: Two Case Studies of Physician-Assisted Suicide.  I've taught this article on several occasions, and the students have almost uniformly reported it to be -- forgive the cliche -- paradigm-shifting.

Check out Wardlaw's article, and the entire issue.

(*Disclosure: Margaret Wardlaw is a friend and a colleague, as well as a graduate student with me during my training at IMH).

On ASBH

I am off to the American Society for Bioethics & Humanities 12th Annual Meeting.  I do have the honor of presenting several items during the Conference, so if there are any Gentle Readers who are of a mind to go and hear me rant and rave in person rather than over the blogosphere, such persons will have such a(n) penalty opportunity.

Readers are always welcome to say hello in any case; comments and suggestions for MH Blog are equally welcome and desired.

UPDATE, 10.27.10: ASBH was excellent, and much fun and learning was had.  For a more thorough and insightful take, do head over to Stuart Rennie's excellent Global Bioethics Blog for a rundown on the conference.  Rennie includes some kind words about one of my own presentations, as well as the most humorous yet accurate assessment of my presentation style I have encountered, in two words, no less: "storming merrily."  His roundup is highly recommended (if only my presentation style merited similar plaudits!).

On The Relevance of Genetic Screening for Population Health

As this is Open Access Week, it is fitting to note yet another superb article appearing in PLoS Medicine, which is fast becoming my favorite medical journal.  The article is entitled Being More Realistic about the Public Health Impact of Genomic Medicine and is, like all articles published in the journal, available full-text, open-access (with commenting function, to boot).  There is no Abstract, but here are the Summary Points:

Before genomic information is used in public health screening, it must be shown that:

• such information predicts disease risk better than phenotypic information;
• cost-effective interventions exist for those at increased genetic risk;
• these interventions are more cost-effective than population-level interventions;
• genetic risk information motivates desired behaviour change.

Currently there are no examples of genetic screening for disease risk that satisfy these criteria.

A running theme on MH Blog has been my dubiety of the existence of close connections between genetic science/medicine and population health.  The article persuasively underscores such doubts, and specifically does so in-context of the merits of a whole-population approach to public health (in contrast to the currently dominant high-risk approach, a subject I have touched on here).

The article is highly recommended. 

On Historical Perspectives of Global Health

Headed by Christian Warren, the Section of the History of Medicine & Public Health at the New York Academy of Medicine has been sponsoring a treasure trove of wonderful scholarships, lectures, and events for some years. 

Now comes news of a Mini-Lecture Series on Historical Perspectives on Global Health, bringing together two of my very favorite things (history of medicine and population health).  The details and registration information are available on the website, but I will post them here as well:

Global Health: Historical Perspectives

As part of our ongoing public lecture series in the history of medicine, this year the Historical Collections and the Section on the History of Medicine and Public health are presenting a three-part lecture series on global health, convened to complement the 9th International Conference on Urban Health to be held at the New York Academy of Medicine this October.

The lectures examine the historical dimension of global health in the 20th and early 21st centuries.

Just as older ways of ordering the world's nations have changed dramatically — relying on colonial relations, Cold War hierarchies, or economic distinctions between industrialized and developing "worlds" — so too have core organizing principles around addressing health burdens around the globe. This transition is clear in the recent preference for "Global Health" over "International Health," the latter emphasizing differences, unilateral foreign aid, and medical missionary energy, the former stressing partnership, interdependence and common goals.

All lectures are free and open to the public. Lectures begin at 6:00 p.m.
and are preceded by light refreshments beginning at 5:30 p.m.
For complete details, visit:
http://www.nyam.org/library/pages/historical_collections_events

Wednesday, November 3, 2010

The Uneven Development of Knowledge about Lead Poisoning: Notes toward a Comparison between the U.S. and Mexico

-Chris Sellers, MD, PhD, SUNY Stony Brook

Thursday, December 2, 2010
The Lilianna Sauter Lecture

The Republic of Therapy: AIDS in West Africa

-Vinh-Kim Nguyen, MD, MSc, PhD, Universite de Montreal

-Commentary by Jeffrey O'Malley, Director of the HIV/AIDS Group in the United Nations Development Programme

Thursday, February 10, 2011

Global Health and the Politics of Cooptation

-Anne-Emanuelle Birn, ScD, University of Toronto

---------------
Watch for more information about our other 2010-2011 lectures. The following speakers are on the calendar for this season:

Tuesday, January 18, 2011
The John K. Lattimer Lecture: Death Investigation in America

-Jeffrey M. Jentzen, MD, PhD, University of Michigan

Thursday, March 17, 2011
The Friends of the Rare Book Room Lecture: Vivisection in William Harvey's Century

-Domenico Bertoloni Meli, PhD, Indiana University - Bloomington

Thursday, April 14, 2011
The Iago Galdston Lecture: "Dangerous Pregnancies:  German Measles (Rubella), Mothers, and Disabilities in Modern America"

-Leslie J. Reagan, PhD, University of Illinois

Monday, May 9, 2011
On the History of Hospital Architecture in New York City

-William J. Higgins, Higgins Quasebarth & Partners, LLC

----------------
This series received funding from the New York Council for the Humanities.
Any views, findings, conclusions or recommendations expressed in this lecture series do not necessarily represent those of the National Endowment for the Humanities.

For full descriptions, or to register to attend these talks, visit:
https://www.nyam.org/library/pages/historical_collections_events

For more information about the Historical Collections at the New York Academy of Medicine, please visit our website, http://www.nyam.org/library/pages/historical_collections .

For more information about the public lectures series sponsored by Section on the History of Medicine and Public Health, please call Arlene Shaner in the Rare Book Room at 212-822-7313 or send email to history@nyam.org.

___________________

(h/t H-SCI-MED-TECH)

A Public Memorial Service for Paul K. Longmore

As noted here previously, Paul Longmore, disability historian, scholar, and activist extraordinaire died on August 9th.

A public memorial service is planned at San Francisco State University, on October 23, 2010.

Details are available here.

On Psychological Pain

David Biro, who is doing some excellent work on pain from a humanities perspective, has a new article out in Culture, Medicine, & Psychiatry (vol. 34, no. 4) entitled Is There Such a Thing as Psychological Pain? and Why It Matters.  Here is the Abstract:

Medicine regards pain as a signal of physical injury to the body despite evidence contradicting the linkage and despite the exclusion of vast numbers of sufferers who experience psychological pain. By broadening our concept of pain and making it more inclusive, we would not only better accommodate the basic science of pain but also would recognize what is already appreciated by the layperson—that pain from diverse sources, physical and psychological, share an underlying felt structure.

This is an excellent article, and well-worth reading, which puts a number of good challenges to dominant conceptualizations of pain in both medical and lay culture in the U.S.  However, I generally remain concerned with efforts that proceed by accepting any dichotomy at all between psychological and so-called somatic pain, because there is excellent reason to believe the distinction between these two is ridiculous.  Biro, I think, is well aware of the incoherence of the distinction, but I admit to anxiety about even referring to categories of pain in context of "physical" or "somatic" and "mental" or "psychological" pain.  Using such categories, even to challenge them, risks conceding too much of importance, in my view.  Howard Fields, who is both a clinician and one of the leading neuroscientists in the world on the subject of pain, said it best in a seminal 2007 essay: "All pain is mental."

One additional point is that there is a very real phenomenological difference to be drawn between different kinds of pain.  Pain and suffering are phenomenologically distinct; it is possible to suffer without pain, and it is also possible, albeit perhaps less likely, to experience pain without suffering.  So the idea Biro presents above, that psychological and physical pain are "flip sides of the same coin," as he puts it, does not commit him to the dubious position that the lived experiences of pain are invariant.  Rather, the point is that the very real and significant phenomenological differences -- the many meanings of pain -- do not license a metaphysical distinction between mental and physical pain.  If I am correct in attributing this position to him (which I flesh out at some length in my own work), he is exactly right.

Thoughts?

   

Call for Papers: Pennsylvania Medical Humanities Consortium Ninth Annual Meeting

Pennsylvania Medical Humanities Consortium
Ninth Annual Meeting
April 15 * 16, 2011

CALL FOR PROPOSALS Deadline: January 31, 2011

The Ninth Annual Pennsylvania Medical Humanities Consortium meeting will be held at Temple University School of Medicine, 3500 N. Broad St, Philadelphia, PA 19130, on Friday evening April 15 through Saturday afternoon, April 16, 2011.

To explore this year’s theme, *The Story of Health and Illness in Urban America, *we are seeking abstracts of papers as well as proposals for panels, workshops, readings and performances that examine topics relevant to medicine and health care, preferably in the context of an urban environment.

The approach should represent the orientation of at least one of the medical humanities (e.g. history, literature, art, bioethics, philosophy, religious studies, disabilities studies, sociology, psychology, gender studies, and anthropology). Proposals should be of interest to a general audience (e.g. healthcare providers, humanities scholars, laypersons, students), and serve as a departure point for lively discussion.

All presenters must be registered conference participants. We particularly welcome submissions from students at all levels and from all relevant disciplines. The consortium focuses on collegial discussion and the sharing of ideas, so paper presentations should be brief--no more than 15 minutes--to allow for adequate discussion. Panels, workshops, readings and performances will be allotted more time, as the planning committee deems equitable, based on their content and number of participants.

Possible topics include but are not limited to the following:

* The challenges unique to the provision of healthcare in increasingly multi-cultural settings

* The implications of healthcare reform on access to care

* Representations of health and illness in literature, art, photography, film, music, dance or mass media

* Evolving relationships between members of the health care team

* Shifting paradigms in the provision of primary care

* “Disability” and disabilities studies in historical context

* Gender issues in medicine and health care

* Patterns of illness and disease unique to urban settings

* Evolving perceptions of aging and “the good death”

* The “new” economics of health care

We welcome interdisciplinary work as well as that of single disciplines.

Please send abstracts and proposals (one page) electronically *as an attachment in Word, or as a PDF file by January 31, 2011 *to the review committee at: cubh@temple.edu, with the subject line ‘PMHC 2011 Proposal’.

Additional information regarding the meeting will be forthcoming, and registration will open in mid-January. For general inquiries about submissions or the meeting itself, or to be added to our mailing list, please contact the planning committee at cubh@temple.edu.

Regards,
Ian G. Sheffer
Chair, Planning Committee

*The Pennsylvania Medical Humanities Consortium (PAMHC) is a diverse group of health practitioners, humanists, scholars, scientists, writers, and students who gather annually to discuss research and teaching in the medical humanities.*

__________________________

(h/t Lit&Med_ASBH)

On Guatemala, Intentional Infection, and Political Structures

For a variety of reasons, I have intentionally begun to move my research and scholarship away from research ethics, which was one of my areas of focus in my postdoctoral fellowship.

Nevertheless, it would be remiss, to put it mildly, to omit any mention of the revelations, stemming from Susan Reverby's work, that the Public Health Service of the U.S. government intentionally infected Guatemalan prisoners with syphillis for research purposes in the mid-to-late 1940s.

The history of unethical human subjects research "in" the U.S. is, as I have written, vast and deep, and precludes any legitimate claim that such transgressions were isolated occurrences.  But it is also worth noting in the present case that the Guatemalan government and health ministry not only knew about the study, but provided financial and logistical assistance to the investigators.

This is simply another in the long line of examples proving Amartya Sen's thesis on the enormous role political structures play in ameliorating or enhancing the misery of their own people.  (see, perhaps most notably, Poverty and Famines).  This is just as true in the developed world as in the developing world.

Thoughts?

UPDATE, 10.7.10: Do take a look at Professor Reverby's own comments on the matter, posted at The Bioethics Forum (of The Hastings Center).  An excerpt:

This experience is, in the end, a chance for all of us to consider the role that these kinds of exposures play in our work. Once the initial shock is over, what do we want the Guatemala revelation to do? The debate on the necessity for protections in the developing world continues and perhaps this will be a reminder of why they matter. I have tried to emphasize that Cutler was not just some aberrant monster. He thought the war on syphilis required these kinds of sacrifices. He thought he was doing good science.

I invite your thoughts on what we do with all this now.