Questioning Race-Based Medicine

Genomic Research Pioneer Argues Against Race-Based Medicine

This past week, Craig Venter told the New Scientist that “Race-based medicine doesn’t have any real basis in science.” I have no idea why this story seems to be of little interest to the majority of science journalists, as it has not been very widely reported, but it represents a major milestone in terms of understanding how humans vary biologically. The story stems from a comparison of Venter’s genome with that of DNA co-discoverer, James Watson.

Venter, who loves both competition and controversy, has set himself apart not only from Watson, whose shameful remarks about the intellectual inferiority of Africans severely tarnished his reputation, but also from his old foe, Francis Collins. Venter was the CEO of Celera Genomics when Collins was the director of the National Institutes of Health’s National Human Genome Research Institute. Both Venter and Collins desperately wanted to be the first to decode the genome as part of the Human Genome Project. Despite Collins’ subsequent arguments against the race concept, when the announcement was made in June 2000 that the Human Genome Project had completed an initial decoding of the DNA strand, he stated that the project researchers had used the genes of five different people, representing the major races of humans, and the racial diversity of humans. Even at that time, this seemed to me to be a confusingly narrow view of human population biology.

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CFP: Feminist Disability Studies in/and Feminist Bioethics

CALL FOR CONTRIBUTIONS

TO A SPECIAL ISSUE OF

INTERNATIONAL JOURNAL OF FEMINIST

APPROACHES TO BIOETHICS (IJFAB)

Vol. 3, no. 2, Fall, 2010

From the Margins to the Center:

Feminist Disability Studies and/in Feminist Bioethics

Guest Editor, Shelley Tremain

In recent years, work done in mainstream bioethics has been challenged by the emerging field of disability studies. A growing number of disability theorists and activists point out that the views about disability and disabled people that mainstream bioethicists have articulated on matters such as prenatal testing, stem cell research, and physician-assisted suicide incorporate significant misunderstandings about them and amount to an institutionalized form of their oppression. While some feminist bioethicists have paid greater attention to the perspectives and arguments of disabled people than other bioethicists, these perspectives and arguments are rarely made central. Feminist disability theory remains marginalized even within feminist bioethics. Continue reading

Memory, trauma, and morality

Cover from Jeffrey Blustein\'s The Moral Demands of Memory.

Cover from Jeffrey Blustein's The Moral Demands of Memory.

Supersonic Sue Campbell has just posted a detailed review of Jeff Blustein’s recent book The Moral Demands of Memory over at NDPR. Blustein’s book is focused on collective memory, trauma, responsibility, and identity, and has a sweep that few books in the field have. Sue draws on her knowledge of collective memory in the context of the residential schools commission in Canada in writing the review, as well as other concrete contexts (e.g., post-Holocaust studies). Check out the whole shebang if you’re interested; here’s a tease. Campbell says, in summary, that Blustein’s book:

is deeply indebted to a range of diverse literatures, carefully and extensively footnoted, and though the book is fairly long, it sustains an impressive momentum. Indeed the last two chapters — on remembrance and rituals of memorializing as love, care, and respect for the dead, and on the nature and importance of bearing witness — Continue reading

Pinker on human dignity and the President’s Council

Cognitive scientist, public intellectual, and (more importantly) inspirational member of the Luxuriant Flowing Hair Club for Scientists Steve Pinker has a piece of interest out in The New Republic, May 28th, 2008, “The Stupidity of Dignity“, which some What Sorters will find of interest. It concerns the use of the concept dignity in thinking on public policy in the realm of technology, enhancement, and human futures, and responds to the President’s Council on Bioethics recent release of a 555-page report, entitled Human Dignity and Bioethics, out in March 2008, and whose table of contents you can find here.

There will be many places on the web that you will be able to find discussions of this, in due course. Hat tip to The Neurocritic for catching my eye, who in turn picked it up from Jason Rosenhouse’s EvolutionBlog .

What Sorts of Death Do We Choose?

The University of Manitoba’s VP-NET (Vulnerable Persons- New Emerging Team) now has a website in operation at http://www.umanitoba.ca/outreach/vpnet/ 

VP-Net looks at palliative care, euthanasia, and other end-of-life issues as they are applied to people with disabilities. The website is in its early stages but the site provides a quick way of getting acquainted with the project. 

What sorts of athletes should there be?

This What sorts question many thought they had figured out is increasingly up for grasp again in all kind of areas. Athletes are one of them.  Who is an Olympic athlete?  Who is a Paralympic athlete? Who is….?  As a contribution to this discourse I wrote the article below.  It is an open access journal, so feel free to download the paper and of course any comment are welcome here or to me directly.

in SCRIPT-ed – A Journal of Law, Technology & Society

Oscar Pistorius and the Future Nature of Olympic, Paralympic and Other Sports
Gregor Wolbring, pp.139-160
| HTML | DOC | PDF |
Oscar Pistorius is a Paralympic bionic leg runner and record holder in the 100, 200, and 400 meters who wants to compete in the Olympics. This paper provides an analysis of a) his case; b) the impact of his case on the Olympics, the Paralympics and other –lympics and the relationships between the –lympics; c) the impact on other international and national sports; d) the applicability of the UN Convention on the rights of persons with disabilities. It situates the evaluation of the Pistorius case within the broader doping discourse and the reality that new and emerging science and technology products increasingly generate internal and external human bodily enhancements that go beyond the species-typical, enabling more and more a culture of increasing demand for, and acceptance of modifications of the human body (structure, function, abilities) beyond its species-typical boundaries and the emergence of new social concepts such as transhumanism and the transhumanisation of ableism.

http://www.law.ed.ac.uk/ahrc/script-ed/issue5-1.asp

Eugenic Cleansing in a Pandemic

The Department of Homeland Security, the Centers for Disease Control and Prevention and the Department of Health and Human Services were among the groups represented on Task Force preparing the recommendations on Pandemic preparedness published in the MAy 5, 2208 issue of CHEST, the official publication of the American College of Chest Physicians.

The recommendations are intended to ensure that health care providers follow a common set of criteria in deciding who gets life-sustaining treatment when a pandemic arrives. Among those lives to be sacrificed for the greater good are those with severe mental impairments and severe chronic illness.

While the guidelines do not include names or pictures of the individuals presumably cast out of Kohlberg’s lifeboat, it is pretty clear that many people with significant disabilities will be left to sink in or swim on their own in some very rough seas. These guidelines suggest that even before a clear shortage of medical resources is identified, available resources may be denied to people with disabilities on the chance that someone “more worthy of saving” might require them later.

During the darkest days of eugenics, the same philosophy led institutional physicians to coin the term “therapeutic pneumonia” to suggest that high institutional death rates were actually a good thing. While many of the practices recommended by the task force fly in the face of human rights, the assumption is that human rights are a luxury that must be dispensed with in times of crisis. For those who still hold eugenic ideals, the guidelines may prove a useful tool to ensure that a pandemic does their dirty work for them