Celltex Therapeutics is a company that "grows and banks stem cells" that are harvested from the ultimate recipient's body fat (an autologous transplant). The company came to national attention when it was revealed that it had provided the services that allowed Rick Perry to be injected with his own stem cells, in an effort to relieve back pain.
In 1999, bioethicist Glenn McGee founded the American Journal of Bioethics (AJOB); he was the editor-in-chief of the journal at the same time he was the president of strategic initiatives for Celltex Therapeutics, as this December 15, 2011 news article makes clear. First, McGee resigned from the editorship of AJOB (but announced he would remain as a consultant until mid-March), then he resigned from Celltex.
On February 17, 2012 Slate published an article. “The Celltex Affair: An Ethics Scandal Strikes the World of Bioethics,” a critique of McGee's relationship with Celltex and Celltex's conduct, written by University of Minnesota bioethicist Carl Elliott. The article was retracted on February 29, 2012. Ivan Oransky reports that Slate's retraction was driven by fear of litigation.
Between February 14, 2012 and March 9, 2012, University of Minnesota bioethicist Leigh Turner wrote a series of blog posts detailing l'affaire McGee and other concerns about Celltex's ethical conduct. On February 21, 2012, Turner sent a letter to the FDA, outlineing concerns that he and others had about Celltex. The letter was on the University of Minnesota's letterhead, which of course Turner, as a professor, had the right to use. In the letter, Turner " expressed concerns about patient-client safety, the quality of scientific research supporting their proposed business model, and whether both will conform to relevant federal and state laws and regulations. "
Celltex responded on March 9, 2012, having their attorneys write a letter to the President of the University of Minnesota:
On March 22, 2012 the university responded by letter, which Ed Silverman of Pharmalot summarized
In a closely watched move, the University of Minnesota has written attorneys for Celltex Therapeutics to say that one of its professors, who recently asked the FDA to investigate the practices of the stem cell company, was speaking only for himself, although he is protected by school policies on academic freedom.
After the U Minn response, a number of other ethicists decided upon a "I am Spartacus" action, each sending their own letter to the FDA outlining their concerns about Celltex. Carl Elliot at the Chronicle of Education has the complete list.
On April 4, 6 and 9, William Heisel of Reporting on Health interviewed Leigh Turner. The first interview focused on medical tourism. The second part focused on what, exactly are the issues that Glenn McGee's actions raise? The final installment covers both the "I Am Spartacus" response from bloggers, and the Streisand Effect -- or how Celltex's effort to intimidate Turner (and Elliot) into silence has backfired.
The Autism Connection
Note: There are at least two issues in "stem cells and autism". One is using stem cells from autistic individuals for research purposes, which is non-controversial. The other is quite controversial -- stem cells as "therapy" the idea that infusing autologous or allogeneic stem cells into an autistic person bloodstream or cerebrospinal could improve their symptoms.
Back in January, 2010, Prometheus at Photon in the Darkness wrote a critique of "Stem Cell Therapy for Autism"
In growing numbers, people are taking their autistic children to “clinics” - in Costa Rica, in Germany, in Russia - to get “stem cell” injections. I put “stem cell” inside inverted commas because it is not entirely clear that what these children are receiving are actual stem cells.
Sources, Stem Cell Transplantation as an Autism Treatment; Medical Tourism in Autism
Sources, L'affaire Glenn McGee
I am keeping a list of reactions (pro and con) to the California Assembly Bill 2109 (AB 2109), which would make Personal Belief Exemptions (PBE) to required school entry vaccinations slightly -- very slightly-- more difficult to obtain.
But there's a side issue. One of the opponents to the legislation, Dr. Bob Sears, has been caught in ... a fib? a misunderstanding?
I decided not to add those posts to the list, because the Dr. Bob question isn't really about AB 2109, but about the veracity of a physician who has done more to raise false fears of vaccines. (If you think that's an exaggeration, why don't you read The Problem With Dr. Bob's Alternative Vaccine Schedule (full text at Pediatrics or Download Offit_Problems_Dr_Bob_Alterna_Schedule (PDF))
What Dr. Bob claimed:
"I was not involved in that [the San Diego measles outbreak] at all."
But he was.
December 29, 2008, in the Orange County Register:
As it turns out, the boy who spread measles is a patient of Dr. Bob Sears, pictured at left, a member of the famous San Clemente pediatrician family and author of “The Vaccine Book.”
"NOR have I ever spoken with Seth [Mnookin]"
But he has.
A number of people stepped up to confront Dr. Bob, both in commentsat the Huffington Post and later on other blogs.
And here is Dr. Bob's rather ranty response to Lilady's repeated questioning.
(click to embiggen)
Updated 3/28/2012 There is some confusion. From news reports in 2008:
The measles-in-the-doctor's-waiting-room transmission:
Eight of the measles cases originated from the Cooperative Charter School, while another four stemmed from the Children's Clinic in La Jolla, according to county health officials.
And this news report from February 16 2008 at SignOn San Diego
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The measles outbreak is San Diego County's first since 1991. It began when a 7-year-old patient returned from Switzerland on Jan. 15 with what would later be confirmed as measles. He or she infected two siblings and at least four classmates. The 8-year-old patient identified yesterday is a classmate of the 7-year-old.
On Jan. 25, the 7-year-old's parents took the youngster to the Children's Clinic of La Jolla. The child may have coughed and sneezed in the office, thus infecting four other children.
Updated 3/19/2012 with Kassiane Sibley's remarks and links to photo and video coverage of the vigil. Scroll donw
Image description: a candle burning against a black background. Image source: By 4028mdk09 (Own work) [CC-BY-SA-3.0 (www.creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons
On a rainy Friday night, March 16, 2012, about 25 people gathered to remember George Hodgins and all disabled people killed by family members. Zoe Gross's remarks are reproduced below. She had also prepared a list of disabled people murdered by family members, which we read aloud, one by one. It was like the long tolling of a bell. Then Zoe invited others to speak; these are the ones I remember and my frail memory of what they said: Kathryn Hedges read a statement by Kassiane Sibley; distance prevented Kassiane from attending. (Update 3/19/2012: Kassiane's remarks are reproduced below). Mark Romoser spoke about the value of all human life. Landon Bryce's neurotypical friend spoke of how his perspective has been broadened, how much he has learned, by getting to know Landon. Steve Silberman talked about the "feebleminded" and "epileptics" murdered by the Nazis in the T-4 program, many of which must have been autistic, who we then remembered. I spoke: I wondered if it was hard for George to have a mother who did not treasure his life.
One of George's teachers from The Morgan Center remembered George, his ready smile, his engagement, his love of swimming and hiking, and that he is missed now and will continue to be missed.
Around the country, those who couldn't attend the vigil light candles to honor George's full humanity and his life.
Remarks by Zoe Gross, who organized the vigil
Last Tuesday, George Hodgins was shot and killed by his mother, who then killed herself. George lived here in Sunnyvale and he was 22 years old. I didn't know George, but I can't stop thinking about him. Maybe it's because we have a lot in common - we lived near each other, we were the same age, we're both autistic, although we led very different lives. I would like to have met George, but I can only mourn him. And I can try to make sure that his story isn't forgotten.
In the wake of this tragedy, I read a lot of articles that asked the readers to imagine how George's mother must have felt. But I didn't see a single article that asked the reader to empathize for George, to imagine how it feels to see your mother point a gun at you. I've seen a lot of people talking about how hard it must be to live with an autistic relative, but I didn't see anyone talking about how terrible it be to die knowing that your parent, who you love and depend on, has decided to hurt and kill you.
Because he was autistic, George is being erased from the story of his own murder.
The story of George Hodgins's death is being discussed and presented as a story of a mother who snapped, and the story of other parents who have felt the same way. It's being told as a story about a lack of services for families with special-needs children, as though a lack of services is a justification for murder.
When disabled people are murdered by their families, this is the story people want to hear. It's the same story that we saw in newspapers after Katie McCarron was murdered, and after Jeremy Fraser was murdered, and after Glenn Freaney was murdered, and after Zain and Faryaal Akhter were murdered. The story goes like this: it is understandable that someone would kill their disabled relative if they don't get help to care for them.
I don't think this is a true story.
Why is the story being told this way? Because we live in a world that doesn't acknowledge the value of our lives as disabled people. Because so many people in our society can't imagine a disabled person living a fulfilling life, so they don't see the tragedy and the wasted potential when one of our lives is cut short.
As disabled people, we have to take a stand against this kind of thinking. We have to get the word out that our lives matter, tha tour lives are our own stories and not just the stories of our non-disabled parents and relatives and caretakers. We have to let people know that they are missing part of the story.
Because the story of George Hodgins's murder is also the story of the disabled community losing one of our own. It's the story of the other disabled people who were murdered by their family members, and it's the story of the society that thinks so little of people with disabilities that these murders are all too often justified as "understandable." Most of all, it's George's story - the story of a young man who enjoyed hiking, who was always looking to learn new skills, who had his whole life in front of him.
Now George is gone, and only his memory remains, and already that memory is being distorted by people who want to tell his story and leave him out. That's not going to happen tonight. We're here to remember the real story.
Kassiane Sibley has kindly given me permission to reproduce her remarks, which are also posted at her blog, Radical Neurodivergence at The Words Said for George
I hate writing for murdered people. It does no good. They're still dead, and people always try to make what I say all about themselves & then they get all mad and hateful at me. But it isn't about them. And it isn't about me, either. It's about the person who is dead but shouldn't be.
This time, it's about George, a pleasant 22 year old man who will never see 23. Before George, it was Katie. It was Christopher. It was Ulysses. It was 100s of autistics before them, know and unknown to me.
These murders are not mercy killings. They are murders, and I am 100% confident in saying that no parent who truly loves their child can kill them. Love does not work that way.
Those of you who are not autistic may be inclined to sympathize with George's murderer. Maybe what you know about autism is tragedy-and-terror style awareness, all about devastation and loss. Maybe you know her, maybe you liked her. Maybe she was your neighbour. Maybe you can't wrap your head around the reality that you had coffee with a murderer. Maybe trying to find mitigating factors makes it easier to integrate that you know someone who killed her son.
Those of you who are autistic are probably feeling more like what I feel-saddened that yet another of our number was killed. Maybe, like me, you are disgusted at the race to exonerate the murderer in the media. And, if you are like me, you are terrified that everyone is blaming lack of services, stress, everything but “HIS MOTHER SHOT HIM” for George's death.
I hate writing for murdered people. Again and again and again I have to defend the very right of the victim to be treated as a human being in all reports, for his very personhood and the personhood of myself and those I hold dear. This stuff shouldn't need saying. My outrage should be the norm, not the exception.
The tragedy here is not autism. The tragedy here is that George, like countless autistics before him, was murdered. The tragedy is that people feel more for his killer than they do for him.
Steve Silberman kindly photographed the vigil; the photographs can be seen at https://www.facebook.com/media/set/?set=a.10151401301460313.815702.830415312&type=3
CBS Channel 5 in San Francisco covered the vigil: http://sanfrancisco.cbslocal.com/video/6851186-memorial-held-for-autistic-sunnyvale-man-killed/
On behalf of the Autistic Self Advocacy Network, I am asking you join us in taking action. On March 30th, help us organize a nation-wide day of mourning for disabled people killed by family members and caregivers. Our goal is to hold vigils in cities across America to memorialize murder victims. Through your help, we hope to amplify our message: that disabled people deserve to live fulfilling lives free of violence
We're calling for volunteers to organize vigils in their local communities on or around March 30th. You may never have organized this kind of event before, but please know that you'll have support - our first vigil was a success, and we can help you as you work to organize yours. If you want to help us take a stand against the violence facing our community, please write to me at zgross@autisticadvocacy.org.
Send a message to society that the disability community has no place for the kind of "mercy" offered by Robert Latimer and others who view us as having lives not worth living. The time has come for us to fight back. On March 30th, help us make it happen.
Today is a national day of campaigning to eliminate the use of the word "retarded" and its derivations as an epithet. I took the pledge to eliminate the r-word from my vocabulary a few years ago. I hope you will too.
New to me this year is The R-Word Reporter
The reason I started The R-Word Reporter was because we attend a lot of movies and I was tired of hearing the R-word ("retarded" for those who do not know) used consistently in many of the movies we were paying money to go and see. I searched high and low on the internet for a place to try and find out whether or not the R-word was used and in which films. Unfortunately, I never found such a place and decided that it would be nice to have a place where I could compile this type of information for our family and for others who are also offended by the casual use of the R-word in pop culture.
You can follow @EndTheWord on twitter. If you like the badge, go to http://www.r-word.org/r-word-resources.aspx and pick your preferred badge.
I commend to you now the word, numpty
Scottish usage:
a) Someone who (sometimes unwittingly) by speech or action demonstrates a lack of knowledge or misconception of a particular subject or situation to the amusement of others.
b) A good humoured admonition, a term of endearment
c) A reckless, absent minded or unwise person
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