Adrienne Asch–RIP

by Rob Wilson. 

Many of us have been saddened today to learn of the death of prominent disability rights scholar and activist Adrienne Asch.  Some obituaries tributes have started to appear, and we will gather those we find in the coming days and add them to this one.  Please feel free to add your own in the comments to this post.

Adrienne was the Edward and Robin Milstein Professor of Bioethics, and Director of the Center for Ethics at Yeshiva University in New York.  She wrote on ethical issues in reproduction, death and dying, and justice for disadvantaged minorities in American society, and is perhaps best-known amongst philosophers for her powerful articulations of core arguments in the disability rights critique of the busy-as-usual practices utilizing prenatal diagnosis and testing.

Adrienne had been supportive of the What Sorts Network in its early days,

Sterilization Abuse in State Prisons: Time to Break with California’s Long Eugenic Patterns

An article by Professor Alex Stern, Living Archives Team Member, has been released today in The Huffington Post. The article, Sterilization Abuse in State Prisons: Time to Break With California’s Long Eugenic Patterns, reveals that at least 148 female prisoners in 2 California institutions were sterilized between 2006 and 2010. Tubal ligations in violation of prison rules during those five years – and there are perhaps 100 more dating back to the late 1990s, according to state documents and interviews.  Professor Stern’s work points to a discernible racial bias in the state’s sterilization and eugenics programs.

Corey G. Johnson of the Center for Investigative Reporting (CIR) published on July 7th a detailed expose’ of unauthorized sterilizations of unwilling women in California prisons. Johnson’s excellent report brought international attention to a scandal that some activists and researchers have at least partially documented. It is important to note that, as the CIR report says, these sterilizations were illegal: Federal and state laws ban inmate sterilizations if federal funds are used, reflecting concerns that prisoners might feel pressured to comply. California used state funds instead, but since 1994, the procedure has required approval from top medical officials in Sacramento on a case-by-case basis. Yet no tubal ligation requests have come before the health care committee responsible for approving such restricted surgeries….

How could this happen?

Governor Gray Davis apologized in 2003 for California’s twentieth-century sterilizations, 20,000  procedures carried out under an explicitly eugenic law. He did so  quietly, via press release, and with no attempt to discover or  compensate the victims. (Recognized experts on American eugenics were  disappointed at the time: Paul Lombardo called it “premature” and Alexandra Minna Stern said it was “preemptive.”) Now his statement seems like a sham. The  fault is no longer the law, it’s the failure to follow the law.

North Carolina is still struggling to pass a budget that includes compensation for its victims of eugenic sterilization.  California has barely started the process of coming to terms with its  troubled history.

The California state prison system is overcrowded — Governor Jerry Brown is appealing a federal court order to release inmates — and conditions are so bad that 30,000 are on  hunger strike. If this report about sterilization helps to usher in a  period of genuine reform, that would be wonderful.

We would still need to educate all too many people, inside and  outside the jail system, about the moral and practical harm of modern  eugenics. Based on some of the remarks by state officials that Johnson  reported, and on some of the comments on coverage of his investigation,  people slide right back into eugenic ways of thinking.

Justice Now is an organization that works with women in prison. Their website has links to the CIR  reports and videos.

Professor Stern’s article in the Huffington Post raises awareness about eugenic practices and calls for a new era of human rights and the protection of vulnerable populations. Tony Platt co-authored the post. The original article can be found here: http://www.huffingtonpost.com/alex-stern/sterilization-california-prisons_b_3631287.html

Meet the New Eugenics, Same as the Old Eugenics

From the Center for Genetics and Society blog, by Gina Maranto, Biopolitical Times guest editor, March 4, 2013

The unfortunate truth is that discredited ideas never do die, they just rise again in slightly altered forms—witness eugenics. Despite the horrors perpetuated in its name, including forced sterilization and the Holocaust, the eugenic impulse is with us still. One of the forms it takes is schemes for “improving” offspring through the selection and manipulation of embryos.

In the last year or so, one neo-eugenic advocate in particular has been garnering media attention. He’s Julian Savulescu, holder of an array of titles, including an endowed chair and directorship of a center at the University of Oxford funded by the Uehiro Foundation on Ethics and Education.

Obesity and Naturalness

High profile anti-obesity activist Meme Roth writes on her blog: “Let’s finally recognize obesity as abuse—abuse of our children, abuse of ourselves—and together take action.” Roth has recently trademarked the term “second-hand obesity”, playing on “second-hand smoke.” She writes that second-hand obesity is passed along from parent to child and from citizen to citizen. Roth makes numerous television appearances every year and continually underlines the association of fat with sickness, death, and unnaturalness.

New research by Dr. Arya Sharma is beginning to break the elision of fat and sickness with his new research:

“The back-to-back studies come as more evidence emerges that a significant proportion of overweight people are metabolically healthy and that the risks associated with obesity do not make for a one-size-fits-all formula.” More can be found here: http://www.canada.com/health/Heavy+healthy+formula+slims+down+definition+dangerously+obese/5257089/story.html

If the risks associated with obesity are less dramatic than once believed, then what is feeding this culture of obesity panic that aims to “blast away fat” and “burn belly fat” away in 10 days or less?

What surprises me about much of the writing on obesity, like Roth’s and Richard Carmona, the Surgeon general of the United States who compared the obesity epidemic to terrorism, is that

Non-consenting human subjects: victims of eugenics?

Non-Consenting Adults

End of life report of Royal Society of Canada Expert Panel

http://www.rsc-src.ca/documents/RSCEndofLifeReport2011_EN_Formatted_FINAL.pdf

Here a few quotes related to us

“We discussed in considerable detail the arguments against assisted suicide. The evidence does
not support claims that decriminalizing voluntary euthanasia and assisted suicide poses a threat
to vulnerable people, or that decriminalization will lead us down a slippery slope from assisted
suicide and voluntary euthanasia to non-voluntary or involuntary euthanasia. “

Also note their definitions. It makes the proposal goes far beyond what is legal in Oregon and Washington eliminating terminal as a boundary

““Voluntary Euthanasia” is an act undertaken by one person to kill another person whose
life is no longer worth living to them in accordance with the wishes of that person.”
“End of life can be understood as a continuum of events starting with the diagnosis of one or more
serious illnesses or injury”

“The Panel recommends against using “terminal illness” as a prerequisite for requesting
assistance. The term is too vague and would leave the statute or policy open to a Charter
challenge. There is no precise science to providing a prognosis of a terminal illness in terms  specific length of time. Health care providers cannot be accurate enough, and if the statute or
policy does not include a time restriction then the condition “terminal illness” becomes too
broad. For example, a person with Guillain-Barré syndrome will die from her disease, but lives
in the average three years after diagnosis. Further, if the term “terminal illness” is made a
necessary condition in the statute, then it would be under-inclusive; there are many individuals
whose lives are no longer worth living to them who have not been diagnosed with a terminal
illness. They may be suffering greatly and permanently, but are not imminently dying. There is
no principled basis for excluding them from assisted suicide or voluntary euthanasia”

Cheers
Gregor

Health Ethics Seminar and Health Ethics Week Event

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

American Society for Bioethics and Humanities: Call for Proposals

American Society for Bioethics and Humanities
Call for Proposals
ASBH 13th Annual Meeting
October 13-16, 2011
Minneapolis, MN
The American Society for Bioethics and Humanities‘ 13th Annual Meeting is scheduled for
October 13-16, 2011, in Minneapolis, MN at the Hyatt Regency Minneapolis. Sleeping rooms at
the Hyatt can be secured at the ASBH group rate of $199 beginning in August. Reservations will
be taken on a first-come, first-served basis.

‘Newgenics’ still rampant in Alberta, conference told

Front page, Edmonton Journal, by Andrea Sands:

 

‘Newgenics’ still rampant in Alberta, conference told.

David Lee Hull and Mary Anne Warren

This week saw the death of two colleagues-at-a-distance whom I more than respected, not simply and coldly for their contributions to philosophy, but for the friendship and caring mentorship they each showed to me early in my career, as I know they did with others. I’ll keep this brief here, just giving some general pointers and two short memorial anecdotes I’ve already posted at other sites.

David Hull was the founding figure in the philosophy of biology.  John Wilkins has already got three posts up on him at Evolving Thoughts, David Hull is dead, David Hull’s Philosophy, and Ruse on Hull: A Memoir.  The last makes me cringe a little, but that’s probably because Michael Ruse often induces that effect, at least in me.  In response to the first, I said:

David was one of the three people I sent my first attempt in phil of biology to–the others were both people in the field whom I’d had some contact with before in other contexts. I was a third year assistant professor mainly working in phil of mind and cog sci at the time, and the paper was on John Dupre’s “promiscuous realism”. Like the others, David wrote back encouragingly and sympathetically. The welcoming response from David, especially since I was a complete stranger to him, marked an important contrast with the fluff and competitiveness of phil of mind at that time, and it made phil of biology a truly attractive option for me to pursue more seriously.  There are likely many other short anecdotes about David’s kindness and professional integrity, but this small one with a big effect for me is what comes to mind first. He will be missed all round.

I also admired David for his successful efforts to convince the Philosophy of Science Association to avoid holding its meetings in overtly homophobic states.

Mary Anne Warren was one of four philosophers who, in essence, put applied ethics on the philosophy map in the early 1970s. 

Mourning Dove at the Catalyst

MOURNING DOVE

Catalyst Theatre is pleased to be the venue for Kill Your Television’s presentation of Mourning Dove

by Emil Sher, running from May 13 to the 22.

Could there ever be a justification for taking a child’s life?  Edmonton’s critically acclaimed, multi-Sterling Award winning independent theatre collective, Kill Your Television will present the Western Canadian premiere of Mourning Dove by Emil Sher. Based on an award-winning radio play and inspired by ‘the Robert Latimer case’ – a true Canadian story – Mourning Dove explores the unspeakable dilemma faced by Doug and Sandra Ramsay, parents of a severely disabled girl who lives a life of pain and agony. Doug is not convinced her next operation, described as a “salvage procedure”, will make a difference, but Sandra, believes it’s their only choice. When Doug takes matters – and his daughters life – into his own hands, worlds are shattered and no one is prepared for the fallout. Mourning Dove asks difficult questions about mercy killing, familial loyalty and personal ethics versus public morality. Controversial and challenging, Mourning Dove is presented by Kill Your Television. Winner of the Sterling Award for Outstanding Independent Theatre 2001, 2002, 2003, 2006.

Featuring: Michael Peng, Nadien Chu, Nathan Cuckow, and Naomi Gaertner

Production Designer: Kerem Cetinel

Stage manager: Jenn Best

Director: Kevin Sutley

Tues-Saturday, 8pm  Sunday matinee at 2pm

Tickets $25, Student/Senior $17

2 Tickets for $20 (Tuesday May 18th)

Tickets available at Tix on the Square (780-420-1750)

The incidentalome and the genome

For those of you who have been concerned about the implications of the human genome and the emergence of the human metabolome, there is another strange new creature born of modern science and  roaming our planet, the incidentalome. The incidentalome is a bizarre creature without clearly defined shape or form but it is not certainly not mythical. Kohane, and others have described the incidentalome as the universe of all possible incidental findings. While this universe of possibilities is not new, its boundaries are rapidly expanding as diagnostic procedures have evolved substantially.

Bankruptcy for Justice?

Barb and Tim Farlow elected to have a malpractice suit against a Toronto hospital heard in small claims court, but a judge has ruled the venue is inappropriate. (Photo by Tim Fraser, National Post Files)

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:

Royal Society of Canada Expert Panel on End of Life Decision Making

The following expert panel has just been announced. Given that Bill C-384, legalizing euthanasia and assisted suicide in Canada, is scheduled to receive its second hour of debate on November 16th, and to be voted on on November 18th, the announcement of the panel is timely (even if largely ineffectual w.r.t. that debate and vote).

Text of the announcement in French and English below. It includes description of the membership of the panel, it’s terms of reference, and contact information.

RSC/SRC Expert Panel on End-of-Life Decision Making October 27, 2009

Among the many public-service roles of national academies around the world, one of the most important is the preparation of expert assessments on critical issues of public policy. The national academies in the United States are the most active in this regard, but the senior academies in other nations, notably in England, France, and other European countries, have been very active on this front for many years. Such reports are designed to be balanced, thorough, independent, free from conflict of interest, and based on a deep knowledge of all of the published research that is pertinent to the questions that have been posed. The Royal Society of Canada (RSC) also has a long record of issuing definitive reports of this kind, either on its own initiative, or in response to specific requests from governments or other parties. The project being announced today, “End-of-Life Decision Making,” is one of a new series that the Society has commissioned, at its own initiative, on issues of significant public interest and importance at the present time. Announcements on the other projects will follow over the course of the coming months. The Society relies on the advice of one of its senior committees, The Committee on Expert Panels (CEP), in formulating new projects of its own and in responding to requests for panel projects from external parties. In addition, the members of the Society’s CEP are responsible for selecting the membership of panels, including the chair; overseeing the conduct of panel activities; managing the peer review of the draft final report; and assisting the panel members with any difficulties that arise during the conduct of their work. Over the course of the past year, the CEP has brought forward suggestions on a new series of expert panel reports for consideration by the Society’s governing board. The board has approved a number of these suggestions, including the project on “End-of-Life Decision Making.” The additional information, below, identifies the members of the panel who have agreed to write this report, as well as the preliminary terms of reference for this project. Questions about this project may be directed to:

Disability Ethics Bibliography

As part of our Work at the Disability Ethics Project, we have just launched a new Disability Ethics Bibliography. There are currently just over 600 references with abstracts and annotations in a RefShare format that is easily searchable with downloadable results. Of course, this is only a small sampling of the relevant materials and the bibliography will continue to be a work in progress.

We welcome your help in helping us identify more of items to include. I you have additional items to suggest for the bibliography please contact us for instructions on submitting items at initativ@ualberta.ca

Vehmas and Sobsey commentaries: now captioned

Below are the short commentaries–now closed captioned–delivered by Professors Simo Vehmas and Dick Sobsey as part of a panel discussion on the theme The Modern Pursuit of Human Perfection: Defining Who is Worthy of  Life.

Bioethical Reflections on Disability, Medicine, and Family Life (Simo Vehmas)

Decisions and Dishonesty in Medicine (Dick Sobsey)

Simo is one of Finland’s leading bioethicists who joined us for the panel discussion, while Dick is one of the world’s authorities on violence and disability and runs the ICAD blog.  The short panel presentations that are the basis for these commentaries–by Wendy Macdonald, Sam Sansalone, and Colleen Campbell–can be heard and viewed (now that they are also closed captioned)–in this post, which also contains more information about the event as a whole.  These should be useful to some of you for teaching, for community discussion, or just for private reflection on the ways in which eugenic or newgenic thinking can be found immersed in ongoing medical practices and cultures surrounding the treatment of people with disabilities.

Next up: the audience-panel interactions, which I’ll post in the next week.

DisRespect Radio Broadcast: Barb Farlow and Rob Wilson

Many of you have likely been following the case of Annie Farlow (Here is a listing of all our Annie Farlow posts) and were looking forward to listening to yesterday’s radio interview of Barb Farlow and Rob Wilson by Geoff Langhorne. If you are unfamiliar with the case then this interview should provide a succinct introduction to the details of the case in an accessible form. The one thing perhaps unclear in the interview is that Annie was NOT a newborn, but 80 days old, and went in to the hospital 24 hours before her unexpected death.  You can also get more from the recently-formed Justice for Annie Facebook group, which you’re welcome to join (it’s an open group), and the Annie Farlow website linked there.

The interview was broadcast on the CFMU (McMaster Unversity Radio) program DisRespect (Here is a little about the show and the program’s host) and is available for listening/download by doing the following:

1. Go to the CFMU website (http://cfmu.msumcmaster.ca/)
2. Click the button near the top left side of the screen that says “PROGRAMMING”
3. Click on “DisRespect” in the programming grid that appears; you’ll find it at 12pm in the Thursday column
4. A pop-up window will appear. In the left column, just click “14.05.2009” and the program will start playing. (If it doesn’t, you should be prompted to download some free software that takes less than a minute to download.) DisRespect starts a couple of minutes into the broadcast.
5. If you would like to downoad the program to your own computer (useful for skipping past the intro and the compulsory musical interludes) then just click “14.05.2009” and once the program starts playing there will be a new box in the bottom of the pop-up window with a download link that you can simply click (Note that the file is 60MB).

An unofficial transcript of the broadcast follows:

Unofficial transcript from DisRespect, with Geoff Langhorne, 14th May, 2009

Geoff: DisRespect welcomes Rob Wilson, who is a professor at the University of Alberta in philosophy is it Rob?,

Rob: ah, that’s right, Geoff.

Geoff: and coordinator with the What Sorts of People Network in Alberta, and Barb Farlow, who was a mechanical engineer and is now an advocate on behalf of people with disabilities in Ontario. Welcome to the show.

Barb: Thank you.

Rob: Thanks for having us.

Geoff: Ok. Barb, this concern that brought you together with Rob started with an incident in your life that our listeners might not be aware of. Do you want to give us the once over lightly?

Barb: Sure, I’ll give you the brief version, Geoff. My daughter died in August of 2005 within 24 hours of arrival at the Hospital for Sick Children. Annie had a genetic condition that was related to disability. Generally the condition comes with very serious anomalies that are considered lethal, such as severe brain defects. However, like all genetic conditions there are a wide range that exist, and my daughter was mildly afflicted. We knew that we would have difficult decisions to make before she was born and ironically we had many meetings at the hospital, specifically to discuss policies and eligibilities for surgery, and ethics and what would happen if this and what if that because we really needed to understand the medical system so that we could properly manage our daughter’s heath within its confines. Once we were assured of the policies, her rights, the ethics, the matter in which any ethical disputes or dilemmas would be resolved, we placed our entire trust in the system.

Philosophy, Eugenics and Disability in Alberta and Places North – Martin Tweedale Parts 3&4

On October 25, 2008, the What Sorts Network hosted a public symposium at the Western Canadian Philosophical Association annual meeting, held in Edmonton, to examine, well, philosophy, eugenics, and disability in Alberta and places north. Four speakers were featured on the panel, Dick Sobsey, Simo Vehmas, Martin Tweedale, and Rob Wilson. This event was video recorded and over the next month we will highlight these videos on this blog. Roughly four videos will be featured each week.

To download the full description of the symposium please click here.

With this video we begin the third portion of the presentation by Martin Tweedale (The preceding parts may be found here). Professor Tweedale’s presentation is titled “Ethical Dilemmas in Eliminating the MacEachran Prizes in Philosophy.” It is a discussion of the decision made by the University of Alberta Philosophy Department over whether to continue its association with the prizes in the name of John MacEachran. Professor Tweedale summarizes the factors considered in the deliberations and explores the extent to which the decision taken was rationally demanded by those considerations.

Part 3

Highlights: exploration of validity of a purely consequentialist argument, challenge of academic cowardice, inadequacy of strict utilitarian approach, what features of the case justify removing the MacEachran prize, (un)importance of overstepping legal authority.

A transcript and the concluding Part 4, follow the cut; fiery Q and A to follow later.

Philosophy, Eugenics and Disability in Alberta and Places North – Martin Tweedale Parts 1&2

On October 25, 2008, the What Sorts Network hosted a public symposium at the Western Canadian Philosophical Association annual meeting, held in Edmonton, to examine, well, philosophy, eugenics, and disability in Alberta and places north. Four speakers were featured on the panel, Dick Sobsey, Simo Vehmas, Martin Tweedale, and Rob Wilson. This event was video recorded and over the next month we will highlight these videos on this blog. Roughly four videos will be featured each week.

To download the full description of the symposium please click here.

With this video we begin the presentation by Martin Tweedale. Professor Tweedale’s presentation is titled “Ethical Dilemmas in Eliminating the MacEachran Prizes in Philosophy.” It is a discussion of the decision made by the University of Alberta Philosophy Department over whether to continue its association with the prizes in the name of John MacEachran. Professor Tweedale summarizes the factors considered in the deliberations and explores the extent to which the decision taken was rationally demanded by those considerations..

Part 1

Highlights: summary of the background events prompting the decision to cease offering an award in the name of John MacEachran, reason for prizes being awarded, who is doing the honouring in providing awards in a person’s name?

Part 2

Highlights: reflections on the negative impact on students of canceling the prize, listing of reasons both pro and con for honouring John MacEachran, investigation of the challenge that we honour for the good and only the good that people have done and none of us are saints, threat of scandal, moral posturing.

A transcript for both parts follows the cut.

Philosophy, Eugenics and Disability in Alberta and Places North – Simo Vehmas Q&A

On October 25, 2008, the What Sorts Network hosted a public symposium to examine, well, philosophy, eugenics, and disability in Alberta and places north.  Four speakers were featured on the panel, Dick Sobsey, Simo Vehmas, Martin Tweedale, and Rob Wilson.  This event was video recorded and over the next month we will highlight these videos on this blog.  Roughly four videos will be featured each week.

To download the full description of the symposium please click here.

With this video we begin the third part of the presentation by Simo Vehmas (The first part may be found here and the second here).  Simo’s presentation is titled “Preventing Disability: Nordic Perspectives” and it focuses on summarizing past and present attitudes towards eugenic practices in Nordic countries, principally Finland, with special attention paid to attitudes and ideas around eugenic practices of preventing disability.

Q&A

Highlights: Is selective abortion another form of sterilization? What was the reason for forming the 1929 commission in Finland and why did it take so long for the results to be passed into law?  How was moral insanity defined? How were illegitimate children viewed in Nordic countries in the early 20th Century?  What was the involvement of religion?

A transcript follows the cut.