Well, at last, here it is. Watch, enjoy, share, like.
Well, at last, here it is. Watch, enjoy, share, like.
Just a quick reminder:
Professor Rob Sparrow will be giving two talks in Edmonton at the University of Alberta on Monday April 8 and Tuesday April 9, 2013. Both talks are open to the public and free! Talks are being held on campus in ETLC (Engineering Teaching & Learning Complex) Continue reading
Blogger Cassy Fiano writes about parents who try to force their surrogate to abort their disabled baby. Cassy is has two sons, one has Down Syndrome.
Crystal Kelley wanted to give the gift of a baby to a family who couldn’t have children. She also needed the money that surrogacy brings. And so, she ended up becoming a surrogate mother to a couple in her state of Connecticut who had three children but wanted more. The first half of the pregnancy was friendly and happy, with Kelley and the parents communicating regularly.
Then there was an irregular ultrasound. After several more ultrasounds, the picture was clear: this was a baby who would be born with some disabilities. She had a cleft lip and palate, a cyst on her brain, and a heart defect. The baby’s parents immediately began to pressure Kelley to have an abortion, claiming it was the more “humane” option. Now, most decent people wouldn’t consider it humane to rob a child of her life simply because she might have a disability. This was the way that Kelley felt, and she refused to have an abortion
Here’s the poster for the upcoming panel, Reproductive Autonomy: Control of Sexuality that we’re hosting this Wednesday as part of the U of Alberta’s Pride Week. The sesssion will feature Lise Gotell and Lane Mandlis as speakers, with Moyra Lang and Rob Wilson performing an interpretative dance (ok, perhaps not, … but we’ll do something useful … or at least will be there). Please print and post, or distribute electronically. Text only version included as well.
Wednesday March 20, 2013 at 3:00 pm – 4:00 pm in Education South Building at the University of Alberta the Living Archives on Eugenics is sponsoring a panel discussion featuring Professor Lise Gotell, Chair of Women’s and Gender Studies and Dr. Lane Mandlis, with Moyra Lang, and Professor Rob Wilson. ASL interpreting services will be offered at this event. Find us on Facebook http://www.facebook.com/#!/events/270019033131796/?fref=ts
A Senate committee was recently established in Australia to review existing law and social policy concerning the sterilization of people with disabilities.
It seems that the inquiry is a response to public response (surprise? outrage?) to finding out that this practice continues in Australia under state and territorial legislation, and beyond it.
I suspect that the commission will find that Continue reading
The Toronto Star recently released an article on the fact that many GTA hospitals, “particularly those in ‘ethnic’ areas [...] won’t let their ultrasound staff tell pregnant women the sex of the fetus,” in order to prevent abortion.
A study from St. Michael’s Hospital reveals that while male/female rations for first child of immigrants from India is 105/1oo, the ratio for third children of immigrants was 136/100. Although researchers caution that their findings are not actually evidence of female feticide (indeed, they do not know why results have turned out as such) and urge people not to racially profile citizens after that, it has caused some concern in the community, and resulted in withheld ultrasounds.
Bioethicist, Tom Koch, commented on pregnant women who choose to abort a fetus with Down syndrome, “We’re engaged in eugenics.”
h/t Anne Pasek
Last month the United Nations announced that we’ve arrived at a human population of more than 7 billion people, sounding a call for alarm to provide targeted reproductive services for the 215 women worldwide that do not have access to reproductive services, according the UN Population Fund.
Population panic is not new. In the early 19th century, Anglican clergyman Thomas Malthus claimed that the dangers of population growth would put human civilization in jeopardy. Malthus did not support keeping the poor alive through charitable means and protested the Poor Laws of the time, which provided food aid and support for poor citizens and set the groundwork for the modern welfare state. Despite the fact that Malthusian population theory was proven to be erroneous- his work has been tremendously influential, most importantly, in evolutionary biology. In 1968, Paul Ehrlich’s bestselling book ‘The Population Bomb’ once again raised alarmist, doomsday predictions about the danger of population growth causing crises of apocalyptic proportions. His predictions were also inaccurate.
There is no question that we are facing a wide range of environmental and financial crises and far too many women lack access and choice in reproductive medicine. However, in the face of doomsday fears of scarcity, targeted population control of specific groups based on class, medical status, race and other social determinants has been a troubling historical trend. The question is not ‘if’ population is a problem; but ‘who’ gets targeted in population control programs. Since the 1920s, targeted and eugenic population control in marginalized populations has been present across North and South America, Australia, the Middle East and Europe. Anecdotally, we can estimate it to be happening, or have happened all over the world. This past summer at the 9th Annual Conference in Ethics in Development in Pennsylvania, a medical researcher from Nigeria approached me following presentation of my paper on sterilization in the Americas, to say that forced sterilization surgery in tribal communities in South and Western Africa has been happening for many years and went on to describe a personal account. Belief that these incidents of reproductive abuse represent collateral damage in the more pressing fight for contraception access has cloaked the deeper Malthusian ideology that lives who cannot provide for themselves are ‘fertility liabilities’.
The Reuters humanitarian news service, Alertnet, recently quoted Parvinder Singh, of ActionAid India on the relationship between fears of scarcity and population: “the issue of population cannot be seen divorced from the aspect of resource or energy footprint,” However, Singh continued to note that: “the largest drain continues to be in the West which have traditionally consumed, and continue to, massive volumes of resources because of a life-style and purchasing power that far exceeds that of so-called high population poorer countries.” Research has demonstrated that raising quality of life for women and their families leads to a drop in fertility- so much so that the world’s richest countries are fearing a further ‘drop’ in their national populations. The recent US recession has created a record low in fertility, leading to fears that there will be ‘not enough’ children born to sustain the national economy. So, not enough of one group- but too many of another? On what basis are these determinations made? On relative value to the economy?
If we are to make progress against this historical trend of using population panic to make authoritarian determinations over which lives have value for reproduction, we have to own up to the pervasive Malthusian ideology that views fertility in the developed world as a valuable resource and developing world fertility as a global liability
JOHN DOSSETOR HEALTH ETHICS CENTRE
HEALTH ETHICS SEMINAR AND HEALTH ETHICS WEEK EVENT
Advances in Genetic Testing: Professional and Consumer Perspectives
Dick Sobsey, EdD Professor Emeritus, John Dossetor Health Ethics Centre
& Faculty of Education
Monday, 7 March 2011 12:00—12:45pm Room 1J2.47 Walter MacKenzie Health Sciences Centre
University of Alberta
You may want to consider supporting this statement and sign on:
Letter / Call to Action
Robert Edwards, Virginia Ironside, and the Unnecessary Opposition of Rights
Please feel free to show your support and sign on to this statement below.
As people committed to both disability rights and reproductive rights, we believe that respecting women and families in their reproductive decisions requires simultaneously challenging discriminatory attitudes toward people with disabilities. We refuse to accept the bifurcation of women’s rights from disability rights, or the belief that protecting reproductive rights requires accepting ableist assumptions about the supposed tragedy of disability. On the contrary, we assert that reproductive rights includes attention to disability rights, and that disability rights requires attention to human rights, including reproductive rights.
We offer the following statement in response to two recent events that promote eugenic reproductive decision-making, and that further stigmatize disabled people by presenting disability exclusively in terms of suffering and hardship. Although seemingly disparate events, they share the presumption that disability renders a life not worth living and that people with disabilities are a burden on society. Moreover, they seem to imply that the only appropriate response to disability is elimination, thereby limiting women’s reproductive choices; they suggest that all women must either abort fetuses with disabilities or use IVF to de-select for disability.
The awarding of the 2010 Nobel Prize for medicine to Dr. Robert Edwards demands a more considered response. He has made no secret about promoting reproductive technologies to prevent the birth of disabled children, arguing that it would be a “sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children.” We protest any recognition of Dr. Edwards that also fails to acknowledge his discriminatory statements, and we dispute the notion that his political views should be isolated from his medical accomplishments. It is precisely this separation that pits reproductive rights against disability rights.
Edwards’ work has assisted in the birth of four million babies worldwide and has helped single people, people struggling with infertility, and gays, lesbians and transgender people to have biologically related children.
However, we can celebrate Edwards’ accomplishments and also call out his controversial advocacy against disability. In the same way that most of the articles celebrating his achievements acknowledge the religious and ethical controversies of his techniques, we can recognize his problematic disparagement of disability. The role he has played in increasing the reproductive options for women and families does not need to be justified or substantiated by arguing for an elimination of disability. It can be marked as an important reproductive option and means of creating families without denigrating disability or people with disabilities.
We also protest any use of disability by anti-abortionists in their criticism of Edwards and his work in developing assisted reproductive technologies. Many people with disabilities have used such technologies in creating their own families and recognize that IVF has made their families possible. Although we share the concern that women and families do not always have the information they need to make reproductive decisions about disability, and that stereotypes about disability persist, we do not think the response to that situation is to oppose assisted reproductive technologies or limit women’s rights.
The recent statements by British advice columnist Virginia Ironside about the “suffering” of disabled children similarly require a challenge from disability and reproductive rights supporters. In arguing for the right to abortion, Ironside stated that knowingly giving birth to a child with disabilities is cruel, and that in such cases abortion is the “moral and unselfish” response. She added that if she had a sick or disabled child, she would not hesitate to “put a pillow over its face,” as would “any loving mother.” Although Ironside’s comments about infanticide have been rightly condemned, her assertion that abortion is the only proper response to disability has prompted little controversy, as has her assumption that advocacy for abortion rights requires accepting the construction of disability as unrelenting tragedy. As reproductive rights advocates who are committed to disability rights, we refuse to accept the rhetorical use of disability as an argument for abortion rights. Reproductive rights demands not only access to abortion but also the right to have children, including children with disabilities, access to information about parenting, and the social and economic supports to parent all children with dignity.
In other words, we hold both disability rights and reproductive rights together, refusing arguments for women’s reproductive autonomy that deny disability rights, and refusing arguments for the human rights of people with disabilities that deny the right of women and families to make the best reproductive decisions for themselves.
Although our statement is motivated by these events, we recognize that these are only the most recent manifestations of long-standing prejudices against people with disabilities and of the use of disability stereotypes to undermine women’s and families’ reproductive autonomy and access to abortion. We hope, with this statement, to support other activists and scholars who are equally committed to both reproductive rights and disability rights. We hope that as advocates in movements that share similar values around civil and human rights we can continue to speak out against the use of reproductive rights to undermine disability rights and the use of disability rights to undermine reproductive rights. Reproductive rights and disability rights are intertwined.
Download Robert Edwards, Virginia Ironside, and the Unnecessary Opposition of Rights (PDF)
from CBC Edmonton, last night, with stacks of comments already.
Front page, Edmonton Journal, by Andrea Sands:
The following seminar announcement may be of interest to many What Sorts readers. You can find the abstract for the presentation below.
JOHN DOSSETOR HEALTH ETHICS CENTRE
HEALTH ETHICS SEMINAR
The Bearing of Psychological Continuity on Fetal and Neonatal Medicine
Howard Nye, PhD
Assistant Professor, Department of Philosophy
Faculty of Arts, University of Alberta
Friday, 24 September 2010
Room 2-07 Heritage Medical Research Centre
(link to map:
For more information please e-mail: firstname.lastname@example.org
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.
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.”
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
The final captioned videos from The Modern Pursuit of Human Perfection: questions from audience members, and responses from the panel. Questions from Rob Wilson, Michael Shaw, Anna Macquarrie, and Bruce Uditsky on vulnerability and trust in medicine, the disconnect with disability in medicine, ways in which parenthood is denied in contemporary society, the absence of true choice in many medical situations, and the systematic devaluation of people with disabilities are all discussed. And all with closed captioning. Enjoy
For the full story, see this previous post.
Below is an abstract from a paper that has just appeared at a prestigious pediatrics journal. It alludes to the Ashley X case in the first sentence, and advocates more widespread use of the high-dose estrogen treatment used there. Read CAREFULLY, and slowly:
Publication of an account of growth attenuation with high-dose estrogen in a child with profound physical and cognitive disability brought widespread attention to a common and complex issue faced by families caring for all children, namely, the potentially negative effect of the increasing size of a child on the ability of his or her family to provide independent care, which in turn makes it more difficult for parents to keep the child in the home and involved in family activities. In this article we explore the scientific rationale for, effectiveness and safety of, and ethical considerations bearing on growth-attenuation treatment of children without profound and permanent cognitive disability. Informed responses to key clinically relevant questions are proposed. Our analysis suggests that growth attenuation is an innovative and sufficiently safe therapy that offers the possibility of an improved quality of life for ambulatory children without profound cognitive disability and their families. Pediatricians and other care providers should include discussion of these options as part of anticipatory guidance around the age of 3 years so that, if elected, potential clinically meaningful benefits of growth-attenuation therapy can be realized. Because of the publicity and debate surrounding the first reported case, ethics consultation is recommended.
Let’s go to it pediatricians! Continue reading
Kristina Chew on autism at change.org, writing in response to her son Charlie’s new neurologist’s request for genetic testing, in a post that begins:
The new neurologist has requested that my son have some genetic testing done, specifically for the PTEN and MECP2 genes, both of which have been connected to autism (and the latter to Rett Syndrome). Which means, there’s been some evidence linking these genes to individuals on the spectrum, but nothing definitive.
Here’s my comment: I’m sure that your neurologist will have an interesting response to the question: what’s the point FOR CHARLIE of genetic testing? Continue reading