This is the title of a new paper by distinguished historian of eugenics, Paul Lombardo, available for download via SSRN here that recently appeared in the journal Ethics and Medicine. The paper focuses on Charles Davenport, who became the Director of the Cold Spring Harbor Laboratory in 1910 and immediate set up the Eugenics Records Office there later that year. It was to become a major institutional force in the development of North American eugenics. While the paper concerns a small episode in the history of eugenics from 1929, what it says about consent, medical intervention, and disability will ring bells for regular readers of this blog. The abstract of the paper reads: Continue reading
and not all five in one post, but each in its own, as I run 5 more posts from What sorts from roughly mid-2008 to early 2009.
Here are five What Sorts posts that I had particular fun writing–from mid-2008 to early 2009–that can serve as a kind of bon voyage for 2009 … despite the fact that only two of them were written in 2009, and pretty early on, at that. Farewell 2009, farewell! May 2010 bring more sunshine and fewer clouds.
In the November issue of the Journal of Medical Ethics, there’s a great paper on the Ashley case by Naomi Tan of Center for Social Ethics and Policy, University of Manchester and I. Brassington. It is titled “Agency, duties and the ‘Ashley Treatment.’”
Reading its full text, I find it reassuring that the authors, unlike some others who have written papers on the case, have obviously read pertaining documents very rigorously and have steadfast understanding of the facts. After describing the case and pointing out some ethical problems in the justifying rationale by Ashley’s father and the doctors, that are not very different from those already pointed out, the authors proceed to a philosophical discussion.
If we call creatures with autonomy and personhood “agent” for the sake of ease, and think that Ashley is a “non-agent,” would it justify the invasive treatments done to her? The authors give two different arguments to conclude that it wouldn’t. Continue reading
When Barb Farlow learned the baby she was carrying had Trisomy 13, her decision to continue the pregnancy “was immediate and innate, and in complete contrast to what I thought I might do,” says the Toronto mother and engineer. She was told the syndrome was lethal, but through online support groups met families whose children were living with Trisomy 13. “It was very important to us that she not suffer unnecessarily, but we wanted to consider any surgical treatments and make ‘best-interest’ decisions for her, like any parent.”
Barb’s daughter Annie (above) was born without the brain and heart defects common in Trisomy 13, but died at 80 days in 2005 after being rushed to a children’s hospital in respiratory distress. Following her death, Barb acquired Annie’s medical records and learned a “not for intubation” order had been written without consent. “This discovery was like the first domino in a long line of questionable events that left us unclear as to whether our daughter’s death was preventable.” Determined to change what she believes is systemic discrimination against treating children with certain genetic conditions, Barb shares Annie’s story at health-care conferences and ethics talks, with medical and law students, in medical journals and through her work with Patients for Patient Safety Canada.
To read the interview itself, which is informative about how Barb and Annie were treated within the medical establishment, including by medical staff at one of Canada’s leading hospitals for sick children, click here.
The gene is called TRAPPC9. Its mutations cause up to 50% of intellectual disabilities worldwide, says Dr. John B. Vincent of the Center of Addiction and Mental Health. The way his team identified the gene disturbs me. They studied genes of a large family from Pakistan that had at least seven members with non-syndromic intellectual disability and another from Iran. Because “researchers and families themselves have long suspected an inherited factor, based on patterns observed in extended families.” Dr. Vincent says, “This spotlights the intense interest that genetics is bringing to types of inherited intellectual disability that, to date, have been poorly understood.” He is talking about “devising potential therapeutic strategies,” too.
This all sounds so familier. The Kallikak family…..the Duke family……Buck V. Bell…….. So it’s coming back, after all?
That’s the pledge made by AVIVA Canada, an insurance provider who has decided to show that they have heart by putting out a cross-Canada call for projects that will improve local communities. The top 25 projects will have the opportunity to share in a cool half-million dollars.
The competition began on October 13th with the first round of submissions. A total of three submission rounds were held and the top 20 entries, based on a tally of votes submitted by anyone caring enough to join the website moved on to the semi-finals. These top 60 entries moved into the semi-finals, where the top 25 submissions would be passed on to the judging round. At the time this was written less than 23 hours remained.
What does this have to do What Sorts? There are some great submissions that it would be great to give a last minute boost of support to. Here are three:
- Helping Medically Fragile Children & Families Enjoy Better Lives. Hope’s Home seeks to improve the quality of life for medically fragile children in the community as it provides the very first medical daycare of its kind in Canada. Our mission is to help medically fragile children Continue reading
CALL FOR PROPOSALS
Conference: “Health, Embodiment, and Visual Culture: Engaging Publics and Pedagogies”
November 19-20, 2010
Hamilton, Ontario, Canada
Sarah Brophy, Associate Professor, Department of English and Cultural Studies, McMaster University
Janice Hladki, Associate Professor, School of the Arts, McMaster University
DEADLINE FOR SUBMISSIONS: January 15, 2010
This interdisciplinary conference seeks to explore how visual cultural practices image and imagine unruly bodies and, in so doing, respond to Patricia Zimmermann’s call for “radical media democracies that animate contentious public spheres” (2000, p. xx). Our aim is to explore how health, disability, and the body are theorized, materialized, and politicized in forms of visual culture including photography, video art, graphic memoir, film, body art and performance, and digital media. Accordingly, we invite proposals for individual papers and roundtables that consider how contemporary visual culture makes bodies political in ways that matter for the future of democracy. Proposals may draw on fields such as: visual culture, critical theory, disability studies, health studies, science studies, autobiography studies, indigenous studies, feminisms, queer studies, and globalization/transnationalism. Continue reading
From Oxford’s Practical Ethics blog:
A group of Dutch researchers has announced a few days ago that they have produced the first in vitro meat. Attempts to create in vitro meat started in 2001 and the Dutch government put $2 to support research in this field, while PETA offered a $1 prize to the first team of researchers that could produce edible in vitro meat by 2012. Researchers in Norway (In vitro meat consortium) and in the United States (New Harvest) are working on this issue as well, so we can reasonably expect that results will come soon.
“In vitro” or “cultured” meat is produced in a cell culture by taking cells from an animal and proliferating them in a nutrient-rich medium (read here)
Read the full post, by Francesca Minerva, at Practical Ethics
Dr. Norman Fost, who wrote two papers on the Ashley case and growth attenuation with Dr. Diekema this year, says on surrogacy in an article below, “It’s paternalistic to tell a competent woman how she can use her body, whether it’s to work in a coal mine or as a surrogate mother. “ He also says, “It’s not clear why that (commodification) would even be of any great consequences to the child if he or she is raised in a loving home.”
Today marks the 20th anniversary of the killing rampage at Ecole Polytechnique in Montreal that left 14 women dead, as many again physically injured, and a province and country stunned and scarred. I find it a bit emotional to write about still, all these years later, so will just link to a few of the stories that are up on it for those who are interested.
Creating God in One’s Own Image is great post from Ed Young at Not Exactly Rocket Science on Nicholas Epley’s just published PNAS paper reporting a scientific study of what happens when God talks to some people, perhaps even YOU
For many religious people, the popular question “What would Jesus do?” is essentially the same as “What would I do?” That’s the message from an intriguing and controversial new study by Nicholas Epley from the University of Chicago. Through a combination of surveys, psychological manipulation and brain-scanning, he has found that when religious Americans try to infer the will of God, they mainly draw on their own personal beliefs. Read the full post from NERS right here.
I’ll be teaching a fairly large, mixed grad / undergrad seminar this coming semester as an ethics course with the working title that coincides with the blog: what sorts of people should there be?. Below is an initial draft of the core part of the syllabus. Feedback and suggestions welcome. One feature of the course will be to integrate some of the posts, videos, and commentaries from the What Sorts blog, using them as a basis for further discussion and readings. If any of you are also making use of some of the resources here or at www.whatsorts.net, let me know by reply here or privately.
Phil 450 / 550
Topics in Ethics
What sorts of people should there be?
Themes, readings, etc.
Course guide description:
This course will be organized around the question “What sorts of people should there be?” and will focus on philosophical issues that arise in several areas at the interface of ethics, science, and technology. Topics that I would imagine covering including most, if not all, of the following: autonomy and personal choice concerning one’s appearance, health, and well-being; choices and responsibilities for one’s own possible and actual children; social policies and common practices regarding future generations, including genetic testing and screening; philosophical and medical views of disability and disablement; bioenhancement and transhumanism; the moral value of human and non-human lives; the nature of persons and the philosophical focus on questions about persons. Continue reading
3 December 2009 – Well here we are on December 3rd, The International Day for Persons with Disabilities. The United Nations and The World Health Organization have set this year’s goals as making the Millennium Development Goals inclusive. In New York, U.N. Secretary-General Ban Ki-moon announced the appointment of Stevie Wonder as a 11th United Nations Messenger of Peace, even though they were forced to evacuate the building during Wonder’s acceptance speech.
Here in Canada tabled the Convention on the Rights of Persons with Disabilities, today. This is a step forward, but it also stands in sharp contrast to the realities for many in Canada today. Continue reading
On Monday, November 30th the National Post (a Canadian national newspaper) posted an update on their previous coverage of the Farlow court case. Those of you who are regular readers will recall that the Farlows have made serious allegations against Sick Kids Hospital in Toronto. These allegations amount to the claim that doctors at Sick Kids deliberately killed their baby, Annie, in 2005 because she had a fatal genetic abnormality. The decision handed down from Judge Herman amounted to a claim that small claims court was no place for the kinds of charges that the Farlow’s were raising: Continue reading
h/t to Graham Oddie, who tips in turn to Mason Cash, completing the Alberta-NZ-Alberta circle of truth and well-being:
This is John Weldon’s To Be, and you can also get it on Youtube directly here. We’ve actually submitted a large-scale grant to get one of these machines, but with the economic downturn, I’m not optimistic about our chances.
Posted over at Leiter Reports, some thoughts on class, academia, and philosophy in particular, both in the post itself and in the many comments already up in response to it.
- This blog/website covers all Apple products with a slant towards disability. They have an interest in users with a disability, adaptive and assistive technology, and making accessible programs and content. The aim is to cover all Apple products including all Mac OS X computers – the iMac, MacBook, Mac Mini, Mac Pro, and older models; the iPod range; the iPhone and iPod Touch; and other products such as the Apple TV and Apple Remote Control.