What is the role Dr. Fost has been playing in the Ashley case?

At the beginning of the “debate” between Dr. Fost and Dr. Lantos on the Bioethics Channel, the interviewer explained, “Dr. Diekema and Dr. Fost were both involved in the Ashley X case”. Dr. Fost himself put a little distance from the case by saying “what the Seattle team had done” in explaining why “we” the authors wrote the recent AJOB article. But that led me back to one of the questions I have been pondering for a long time: What is the role Dr. Fost has been playing in the Ashley X Case?

Dr. Diekema and Dr. Wilfond had their residency at the University of Wisconsin. Dr. Diekema introduced Dr. Fost as “mentor of mine” at the 2007 bioethics conference of the Seattle Children’s Hospital. Dr. Fost has been one of the guest speakers at the conference for years. He’s been often invited to speak at the hospital seminars, too. So we can easily imagine that he is very close to the hospital (or to the Truman Katz Bioethics Center, at least) and that he must have a strong influence on Dr. Diekema and Dr. Wilfond who are both directors of the bioethics center. But did we know that Dr. Fost was “involved in the Ashley case”?

Dr. Lantos “Nobody knows exactly what went on in that committee meeting.”

Visit this bioethics site and go to the Bioethics Channel from the link there. Yes, this debate between Dr. Fost and Dr. John Lantos who wrote a critical commentary in AJOB deserves a listen.

Dr. Lantos says court review is absolutely necessary, pointing out three problems of ethics committees in cases like the Ashley case: there’s no transparency, there’s no due process, and there’s no accountability. He says “Nobody knows exactly what went on in that committee meeting.”

How true……

“The Ashley Treatment” has been done to a dozen of children, Ashley’s father says, but who sent the email to him?

In his third anniversary update of January 13, Ashley’s father writes “About dozen parents all over the world who are successful at providing the treatment to their Pillow Angels (boys and girls) are in contact with us.” He also mentions an email from “an attending doctor of a panel on Growth Attenuation at the pediatric conference held in Hawaii in May 2008” that says “when we asked for a show of hands, about half of the room said they had been approached by a family seeking growth attenuation, and about a dozen raised their hands when asked if they had offered it to a family.”

Claire wrote a great post here about this shocking revelation, pointing out that the growth attenuation is being justified for children with far lighter disabilities than Ashley’s for caregivers’ convenience. I appreciate what she has been writing on this issue. I agree with her 100% and share her sorrow at this new information.

Here, I would like to raise a question. Who is “ an attending doctor” who sent the email and reported to Ashley’s father about how the conference had gone?

The American Academy of Pediatrics had an annual meeting in Hawaii May 3-6, 2008. I found the program of May 4 here. The program 4195 titled “The Pillow Baby: Growth and Puberty Attenuation in Children with Profound Developmental Disability” seems to be the panel mentioned by Ashley’s father.

Canada’s Paralympic Raisin in the Sun

What happens to a dream deferred?

Does it dry up like a raisin in the sun?

—Langston Hughes

On December 3, 2009, The International Day of Persons with Disabilities, Canada tabled in the House of Commons the United Nations Convention on the Rights of Persons with Disabilities. According to Minister of Defense Peter McKay who tabled the Bill:

The government’s tabling of the Convention on the day the United Nations officially designates the International Day of Persons with Disabilities demonstrates Canada’s strong commitment to removing obstacles and creating opportunities for persons with disabilities.

The government indicated that this was important legislation and that it would work to pass the Bill in time for the Paralympic games in February.This certainly was a lovely dream.

Heidi Janz Wins 2010 Tanis Doe Award

Heidi Janz wins Tanis Doe Award

Dr. Heidi Janz received word this morning that she has been selected by the Canadian Disability Studies Association that she has been selected as the recipient of the 2010 Tanis Doe Award for Canadian Disability Study and Culture. This annual award was first given in 2009 and honors activist and scholar Tanis Doe who died in 2004. According to the Canadian Disability Studies Association:

This award honours an individual who dares to “speak the unspeakable” in advancing the study and culture of disability, and who has enriched through research, teaching, or activism, the lives of Canadians with disabilities.

Tanis Doe, a Métis (Ojibway/French Canadian) Deaf woman, who was a wheelchair user in the later part of her short life, received her Doctoral Degree from the University of Alberta, before going on to hold the Ed Roberts Post-Doctoral Resreach fellowship at the University of California- Berkeley, being appointed a Fullbright Scholar in Bioethics at the University of Washington, and teaching at several other universities, including her final post at the University of Victoria.

LifeSiteNews on Baby Isaiah, Katya Sansalone, and Annie Farlow

This up yesterday at LifesiteNews.com:

EDMONTON, Alberta, January 20, 2010 (LifeSiteNews.com) – While Isaac and Rebecka May, the Canadian couple who are fighting for their new-born baby’s life, are awaiting a January 27th judgment on their petition for a 90-day injunction against their hospital’s order to remove their baby Isaiah’s ventilator, some advocates for the disabled are saying that what the May’s are experiencing is shockingly common in Canada. According to Sam Sansalone, father of Katya Sansalone, who was born 8 years ago with full trisomy 13, in Canada “profoundly disabled kids are routinely – and intentionally – not treated with life-saving intervention.” Sansalone serves as co-chair of the Advisory Committee of Family to Family Connections at the Alberta Children’s Hospital, a family-centered care initiative recently launched in Southern Alberta.

He said that “the dynamic that we had to fight became very quickly and firmly entrenched as soon as we had a genetic diagnosis.” “The clear mandate, at least at that time, was that you don’t save these disabled children’s lives,” he continued. “You allow them to die – even though the needed interventions are exactly the same as would routinely and unquestionably be given to quote-unquote normal children.” Katya Sansalone was born with a cardiac condition that is associated with her chromosomal defect. The Sansalones fought hard with their hospital, the Hospital for Sick Children in Toronto, to have them perform the cardiac surgery that Katya needed. The hospital initially refused to do the surgery, he said, but “they didn’t make it look that way.” “Initially they said we had a choice, and then they proceeded with trying to influence that choice by giving us false information about the range of outcomes,” he continued.

Sansalone attributed their success in part to the fact that his wife is a doctor, which helped the family to research Katya’s condition. This research allowed them to be “not so easily fooled by this kind of misinformation.” Sansalone said the hospital “actually tried to hide medical literature from me.” He saw that on one occasion the neonatologist had a key study on a clipboard that actually dispelled myths about Katya’s condition that the hospital had perpetuated, but the doctor held the study out as though it supported their position. “When I tried to read it, the neonatologist doctor actually pulled it away from my view,” he said.

Sansalone believes their experience might have some parallels to what the Mays are now going through with the Stollery Children’s Hospital. “I hear that they were being denied … regular access to the patient chart – reading it and seeing the imaging.” “That is completely illegal, … read the full story at LifeSiteNews.

Baby Isaiah and Life and Death in Alberta

from the CTV Edmonton website, their story Baby Isaiah gets reprieve as judge asks for more time. Parents petitioning to force a hospital to keep their infant alive. Which country is this? You can read the full story, by Melissa Dominelli, at the link above. It starts:

A city judge has decided she needs more time to consider the arguments in the case of an Alberta family battling Alberta Health Services (AHS) to keep their son on life support. This means that baby Isaiah James May will not be disconnected from his ventilator Wednesday afternoon as originally planned by AHS and the Stollery Children’s Hospital. Madame Justice Michelle Crighton ruled Tuesday morning in an Edmonton courtroom she will come back with her decision on Jan. 27th after hearing from an independent expert in the emotionally-charged issue. The lawyer for the May family wants the hospital and health authority to delay their plans for 90 days. Alberta Health Services told the court they are willing to wait only 30 days. AHS released this statement Tuesday afternoon addressing its part in the court battle. “The medical and ethical discussions for this family and care providers are the most difficult imaginable. Our heartfelt sympathies go out to the family. Our medical, nursing and allied health teams have and will continue to support this family in every way possible. It is appropriate to turn now to the courts for direction.”

Remember Annie Farlow. See also the CBC News Edmonton coverage of the story here.

Vancouver 2010 Olympic and Paralympic Games podcast

The Talks
As Canada prepares to host the world’s best, Vancouver 2010, The Globe and Mail, and the University of British Columbia in collaboration with universities across Canada, are partnering on a unique project inviting the public to flex their intellect via podcasts by some of the country’s best minds on topics related to the 2010 Winter Games.

My podcast is live

Gregor Wolbring

Who will be the future Olympic and Paralympic athlete? The impact of advances in science and technology and bodily assistive devices on Sport.

http://www.theglobeandmail.com/intellectual-muscle/the-talks/article1312702/

The transcript of the podcast is situated here

http://www.bioethicsanddisability.org/vancouverpodcast.html

Tony Judt on motor neuron disease

There’s a very interesting video of distinguished historian Tony Judt talking about motor neuron disease, life, and euthanasia up about a week or so ago at The Guardian website. The article is entitled “One of the worst diseases on the Earth”, taking a line from the interview itself. It isn’t embeddable right now (so far as I can tell), but the link to it is right here.

What a schlimazel!

Indeed.  In the usual bad taste …

h/t single dad / disabled daughter

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.

Ashley… effects of estrogen on weight

Many people have pointed to the conspicuous absence of  an mention of Ashley’s mastectomy in Diekema and Fost’s (2006) article on growth attenuation. There is another conspicuous absence that has not received the same attention. The authors provide no data about Ashley’s weight. This absence is troublesome since the author’s justify the procedures by indicating that Ashley was getting much larger and the primary concern was that she would become to heavy to be cared for by her family. However, they provide information about Ashley’s height before and during treatment but nothing about her weight.

How heavy was Ashley? Did her treatment succeed in attenuating her weight?

Ashley Revisited… American Journal of Bioethics

Today,  12 January 2010, the American Journal of Bioethics published 30 more pages of material on the Ashley X Growth Attenuation controversy. Approximately the first half of these pages are Diekema and Fost’s “response to critics” and the remainder is comprised of nine brief peer commentaries on the  Diekema and Fost article.

Predictably, Diekema and Fost vigorously defend the “Ashley procedures.” They categorize and, in some cases, mischaracterize the many critical arguments against the procedures into 25 objections, determine that some have substance, and then provide counter-arguments to in an attempt to dismiss all 25.  In my opinion, one of the problems with this approach is that they attempt to play three roles. They present their own side of the issue, present the opposing view, and then set themselves up as objective  judges of the two arguments. Not surprisingly, they find themselves to be right and their critics to be wrong. Thankfully, the American Journal of Bioethics provided an opportunity for peer commentary. Of course, not all the commentary directly opposes the procedures, but most of it does.

Bottle Drive for Alberta’s Government

Join the bottle drive to help Alberta's government sort its finances

While I’m sure that there are provinces or states in which the level of financial ineptitude is higher than it is in Alberta, I think we’re front-runners for any competition on that front that is weighted by massive insensitivity to the most vulnerable members of its population. Having cut liquor taxes to the tune of about $180 million last year, the Province now wants disability organizations collectively to return $2.8 million from the measly budgets they were given for this fiscal year. If you’re in Edmonton, and are outraged, here’s the event for you:

On Thursday January 14 from 7:00 – 8:00 PM in Edmonton at McDougal United Church 10025 – 101 St. there will be a rally to support individuals with developmental disabilities by protesting the government’s plans to reduce supports and services. This is an important opportunity for you to show your support for some of Alberta’s most vulnerable citizens and their families. Everyone is welcome and encouraged to attend.

You are invited to bring an empty bottle (or more) with a note inserted for Premier Stelmach expressing your opposition to his government’s disregard for the future well-being of individuals with developmental disabilities. Since the government has difficulty managing its finances you can help by bringing your empties and perhaps the Premier can collect the deposits to fill the governments coffers.

Human Trafficking

National Human Trafficking Awareness Day in the US today, and a video from World Vision’s STIR in Australia to reminds us that the problem is real, and growing.

A lot more detail, extra vids, etc., at Like a Whisper.

Lennard Davis on SSRIs

Over at his blog column at Psychology Today, distinguished disability theorist Lennard Davis has just posted “Five Reasons Not to Take SSRIs”. Selective Serotonin Reuptake Inhibitors, the best-known of which is Prozac, have been massively prescribed for the past 15-20 years by doctors and psychiatrists, especially for depression. Davis begins:

For the past five years, and in my recent book OBSESSION: A HISTORY, I have been questioning the effectiveness of Prozac-like drugs known as SSRIs. I’ve pointed out that when the drugs first came out in the early 1990′s there was a wildly enthusiastic uptake in the prescribing of such drugs. Doctors were jubilantly claiming that the drugs were 80-90 per cent effective in treating depression and related conditions like OCD. In the last few years those success rates have been going down, with the NY Times pointing out that the initial numbers had been inflated by drug companies supressing the studies that were less encouraging. But few if any doctors or patients were willing to hear anything disparaging said about these “wonder” drugs.

Now the tune has changed. …

To read the full post, click here.

Aimee Mullins on Gizmodo on Racing on Carbon Fibre Legs

Aimee Mullins running on a beach

American athlete Aimee Mullins has been a guest editor over at Gizmodo recently, and her “Racing on Carbon Fibre Legs” is worth a read on Cheetah legs, Pistorius, an ableism. Amongst the things of interest are:

As of yet, the best prosthetic available is not as efficient and not as capable as what Mother Nature gives us — or, what she was supposed to give me and South African sprinter Oscar Pistorius. The revolutionary design of the woven carbon-fibre Cheetah Leg, nicknamed for its design inspiration, has been in existence for nearly 15 years — and after my initial triumphs with them in the mid 1990s, it has been the leg of choice for nearly all elite amputee sprinters. But in one instant, after Pistorius entered a summer 2007 track meet in Rome and placed second in a field of runners possessing flesh and bone legs, he and I were deemed too abled.

And then, in conclusion:

The Pistorius Story

There is now a nice pair of videos, running for just under 12 minutes, on Oscar Pistorius, made shortly before the Beijing Olympics, up on Youtube. They take the story up to the point where the Court for Arbitration in Sport overruled the initial IAFF decision banning him from competing with non-disabled athletes. For that decision, see Gregor Wolbring’s thoughts and related discussion in earlier posts here and here.