Medical experiments on children/Canadian researchers find new stem cell source/Obese Moms Risk Having Babies With Birth Defects

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http://www.cbsnews.com/stories/2005/02/09/60II/main672701.shtml

A Dark Chapter In Medical History

 

Feb. 9, 2005

 

 

 

 

Sonoma State Hospital, which housed 3,500 students, was the largest

institution for children in California. (Photo: CBS)

 

 

 

" They were the raw material of medical research. "

Susan Lederer, Yale University

 

 

Karen Alves was just 10 when she lost her baby brother, Mark, in 1961.

Mark, who suffered from cerebral palsy, was sent to Sonoma State Hospital.

(Photo: CBS)

 

 

 

(CBS) Karen Alves was just 10 when she lost her baby brother, Mark Dal

Molin, in 1961.

 

As the oldest of four, she says her fondest childhood memories are of doting

on her little brother. " One of the things we looked forward to, when we came

home from school, was to play with Mark, " she says.

 

But life would be a struggle for the Dal Molins because Mark was born with

cerebral palsy, a condition that cripples the body, but not necessarily the

mind.

 

" In the '50s, cerebral palsied children were considered to be

developmentally disabled, mentally retarded, " says Alves to correspondent

Vicki Mabrey.

 

" I never believed he was mentally retarded. When you looked into his eyes,

he communicated through his eyes. . He'd laugh and giggle and kick, and just

screech when he saw us. "

 

But by 3, Mark could neither walk nor talk, which meant his mother,

Rosemarie, had to care for him.

 

" We know he recognized everybody, " says Rosemarie. " He would laugh or he

would cry if he was unhappy. "

 

The children's father, Bill Dal Molin, felt that Rosemarie was neglecting

their three daughters, because of Mark. " His mother was very, very much

attentive to him, and the girls, I felt, were like troops to her, " says

Bill. " She was very hard on them, the girls. "

 

Doctors advised the Dal Molins to commit their son, so Bill told Rosemarie

they had to send Mark to an institution. It was November 1958.

 

" I just remember one day coming home from school and the house was very

quiet, " says Karen, who never got to say goodbye to her brother. " I don't

remember much after that. It profoundly affected me. "

 

Rosemarie had committed 3-year-old Mark to Sonoma State Hospital, the

largest institution for children in California. At the time, the hospital

housed 3,500 children with diverse needs, from babies born with minor

defects, like a cleft palate or a club foot, to children with epilepsy and

Down syndrome.

 

While the severely disabled languished in overcrowded rooms, the able-bodied

were put to work in the institution's dairies and orchards.

 

Rosemarie did something more that other parents who had committed their

children to Sonoma State did not; she visited her son every Wednesday.

 

" It was just a small thing that I can still do is to go see him, " says

Rosemarie. " Because most of these children, they never see parents again. "

 

But those visits came to an abrupt end on Memorial Day, 1961, when Mark was

6.

 

" I picked up the phone and I heard a voice say, 'Is Mrs. Dal Molin in?' and

I just knew, " says Karen. " They didn't even say where they were calling

from. But I just, this dread came into my heart, and I got my mom and I

left. I ran. I hid. Nobody told me. I knew he was dead. "

 

From that day on, Karen and her sisters, Chris and Gail, say they never

spoke Mark's name again. They buried their grief, grew up and had families

of their own. But after 40 years, they still struggle with the decision to

institutionalize their brother.

 

" It pretty much blew the family apart, " says Gail. " I believe that Dad did

what he felt was best for the family. In my heart, I know that is true. But

the impact of it on each one of us and the family was devastating. "

 

In 1994, haunted by thoughts of her baby brother, Karen decided to devote

all her spare time to answering the question that had burdened her for

decades: how exactly did Mark die?

 

" I just needed to know and, no matter what it was, I needed to know. So I

went to the recorder's office, " says Karen.

 

" There was no death certificate. One of the clerks came over to the front

desk, leaned over and said 'When did he die?' And I said, '1961.' 'Well,

when did he go into Sonoma State?' And I said, '1958,' and she said, 'You

better look into it, because strange things happened there.' "

 

Things got stranger still when Karen noticed an article in the local paper

saying 16,000 people, including children, had been used in radiation

experiments. " Out of curiosity, I started to read it, and they mentioned

patients that were in state-run hospitals being used, " says Karen. " And I

just go, 'Oh my God.' This could be it. "

 

Then, President Clinton had just ordered thousands of secret documents on

government-sponsored human radiation experiments declassified and made

available on the Internet.

 

Karen found a study funded by the federal government involving 1,100 Sonoma

State cerebral palsy patients from 1955-1960. One document she also found

showed that her brother had been part of the study, assigned Specimen #8732.

 

Karen wasn't able to find out what tests, if any, Mark was subjected to. But

some of the patients in the Sonoma State study were put through painful

procedures like the pneumoencelphalogram, in which air is injected into the

brain before a series of X-rays.

 

" Imagine puncturing someone's spinal cord, drawing fluid out and putting a

foreign substance in there. Gas, " says Karen. " When they trap air in your

body, you're in pain, excruciating pain, for days. "

 

" They were the raw material of medical research, " says Susan Lederer, who

teaches medical history at Yale University. She was a member of the

presidential committee that investigated the radiation experiments, and she

says she wasn't shocked by the findings because researchers have been using

disabled children in experiments for over a century.

 

" Children in orphanages, children in homes of the mentally retarded, these

are all good populations from the sense of medical research, because you

have an easily accessible group of people living in controlled

circumstances, and you can monitor them, " says Lederer.

 

Lederer read the study that was conducted at Sonoma State Hospital, and says

the children underwent painful experimentation " for which they received no

direct benefit. "

 

" It seems clear that these were intended to enlarge knowledge about cerebral

palsy, " adds Lederer.

 

It did not produce a breakthrough, although Lederer says studies using

mentally retarded children were critical in creating vaccines for polio and

hepatitis.

 

Lederer says using captive populations meant big money for medical

researchers: " It would even be an advantage in applying for grant money,

because you don't have to go to the problem of recruiting subjects. "

 

In the case of Sonoma State, records show that when the study began,

cerebral palsy admissions there jumped by 300 percent.

 

" One of the ways that medical directors of such institutions sort of

connected themselves to the world of medical research was simply to provide

their patients as commodities, " says Lederer. " I mean, we can provide this

many guinea pigs for you. "

 

Sonoma State is now known as Sonoma Developmental Center. During her 12-year

search, Karen repeatedly wrote to the current administrator, looking for

information about Mark.

 

She was told that there were " no records on radiation studies at Sonoma, "

and that there was " no record that your brother was involved in radiation

research. "

 

" And I'd say, 'Just go to the human radiation Web site and put in Sonoma

State Hospital in your search and documents come up, " says Karen. " You've

gotta have something there. No. They deny it. Deny it. If I called her right

now, she'd deny it. "

 

Administrator Theresa Murphy has worked at Sonoma State for 30 years. She

said she didn't have any information about the medical experimentation that

was taking place at the institution.

 

When asked if patients at state hospitals were used in medical research,

Murphy says, " I've read that there has been things like using rattlesnake

venom of epilepsy. But you know, there's just nothing in our archives about

the research you are talking about. "

 

" If these studies were being done, if there are patients from here being

sent for radiation studies, is that a stain on the hospital record, " asks

Mabrey.

 

" I think in the history of people with developmental disabilities, and there

have been some dark times. I truly believe that, " says Murphy. " And it

wouldn't surprise me that there were things we would find - consider

questionable today. "

 

It took two years and a court order for Karen to get Sonoma State to turn

over Mark's medical records. Though not complete, records did show that Mark

Dal Molin suffered unusually high fevers the last six months of his life

before dying of a seizure.

 

" He ran extremely high fevers that none of us here right now would live

through, " says Karen. " Swollen eyes, seizures, those things can fit in with

radiation poisoning. "

 

Mark's records contained another shock. Karen found not one, but two autopsy

reports, one for his body and another for his brain. Karen says that Mark's

brain was removed after he died.

 

" They took my brother's brain without consent, and the doctor, in his

obituary it said that he had one of the largest brain collections, " says

Karen. " And if there's any way for me to find that, I would like to put him

back together. "

 

60 Minutes Wednesday learned that between 1955 and 1960, the brain of every

cerebral palsy child who died at Sonoma State was removed and studied.

 

Rosemarie says she never gave them permission to take Mark's brain for

research purposes. " I came from Europe after the war, where all these

horrendous things happened, " says Rosemarie. " I never dreamed that in this

country, they would do experimenting children. Handicapped children. "

 

Unless their families claimed them, the children ended up in a community

grave with the ashes of 500 other people, or buried in a empty field without

a headstone to mark their passing.

 

Theresa Murphy showed 60 Minutes Wednesday the final resting place of 1,400

Sonoma State patients. " The folks that remain here are undisturbed and

available for family visitation, " says Murphy.

 

But Mark Dal Molin's family was able, at least, to spare him that fate. They

had him cremated and placed his ashes in a private mausoleum.

 

 

© MMV, CBS Worldwide Inc. .

 

 

Canadian researchers find new stem cell source

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/1107961820981_103371020/?hub\

=Health

 

Canadian Press

 

TORONTO - A part of the umbilical cord once thought to have no value has

been found to contain a rich source of stem cells, offering hope for

improved success in bone-marrow transplants and tissue repair, Canadian

researchers say.

 

The stem cells are found in the connective tissue surrounding blood vessels

in the umbilical cord and can be removed and grown in a few weeks to provide

an abundant number of cells, said John Davies, a professor of biomaterials

at the University of Toronto and head of the team that reported its findings

in the journal Stem Cells.

 

These stem cells, called mesenchymal progenitor cells, are those that go on

to become bone, cartilage, muscle or other connective tissue.

 

It's long been known that blood from the umbilical cord is a source of

blood-forming stem cells, and an increasing number of parents are having

them frozen and stored as insurance against future diseases in their child

or other family members.

 

" This provides another source of cells which could be stored from the

umbilical cord, which is otherwise just thrown away, " said Davies, whose

team used cords only from full-term newborns, donated by parents

specifically for research.

 

Davies said these stem cells could be used in transplanting bone marrow -

the body's factory for stem cells that develop into the components of all

the different tissues of the body, from the brain and organs to muscles and

bone.

 

Bone-marrow transplants are often performed to treat leukemia and some other

cancers, as well as immune-deficiency disorders. The transplant requires

blood-forming stem cells as well as connective-tissue stem cells.

 

But with the difficulty of matching bone-marrow donors and recipients, more

doctors are scooping stem cells from the bloodstream, growing them in the

lab, then infusing them into the patient.

 

Davies said previous studies have suggested that adding more

connective-tissue stem cells could boost the success rate of bone-marrow

transplants, which currently averages about 40 per cent.

 

In bone marrow, connective-tissue stem cells and blood stem cells " talk to

each other and depend upon each other for their survival, " said Davies.

 

" So there's an increasing understanding out there that we may be able to

radically increase the success of marrow transplants by co-infusing blood

stem cells with mesenchymal cells. "

 

Bill Stanford and his wife, who are both involved in stem-cell research, had

their first child in April and decided to bank their son's blood stem cells

and his mesenchymal cells.

 

" We were too impressed by this source of stem cells not to take advantage of

this biological insurance, " said Stanford, a cell biologist at the

university, adding that the cells could potentially lead to treatments for a

myriad of connective-tissue diseases in the future.

 

Among those are arthritis and osteoporosis, both common among North

America's greying population.

 

" Mesenchymal stem cells can leave the marrow during injury and actually home

(in) to the tissue which is damaged, " Davies said. " This is why these cells

are very important to us in an ongoing state of tissue repair throughout

life. "

 

Administering an extra dose of these connective-tissue stem cells can also

help repair broken bones or build new cartilage, he said.

 

Dr. Allen Eaves, a senior scientist at the B.C. Cancer Institute, called the

discovery of the new source for the stem cells exciting.

 

" The cord is normally discarded after birth and this is a non-controversial

source of stem cells, and this makes it particularly attractive, " Eaves said

from Vancouver. Controversy has arisen over proposals to use stem cells from

aborted fetuses or fetuses grown specifically for research.

 

" More study is really needed to try and optimize the use of these cells, "

said Eaves. " There's no question they have some therapeutic use. "

 

As well, studies have shown that those stem cells that survive the deep

freeze and thawing out are missing an antigen that causes transplant

rejection - suggesting that these cells could be used safely in non-related

people, the researchers said.

 

The next step for Davies and his team is to test the mesenchymal stem cells

in immunologically deficient mice to see how they might develop if they were

infused back into a human body.

 

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http://rense.com/general62/pbb.htm

Obese Moms Risk Having

Babies With Birth Defects

By Andre Picard

The Globe and Mail

2-9-5

 

The more overweight a woman is before getting pregnant, the greater

her risk of having a baby with a severe birth defect, according to new

Canadian research. The study, published in the medical journal Obstetrics

and Gynecology, also found that fortification of refined flour with folic

acid, a public-health measure that has sharply reduced neural-tube defects

such as spina bifida, has had a far lesser impact on the babies of obese

women. " All weight groups benefit from folic-acid fortification, but women in

the highest-weight groups benefit the least, " Dr. Joel Ray, a

clinician-scientist at St. Michael's Hospital in Toronto, said in an

interview. He said there are many possible explanations for this phenomenon.

 

First, women who are overweight or obese can be prediabetic, and

diabetes is a risk factor for birth defects. Second, it is possible that the

heavier a woman is, the more folic acid she needs. And third, women who are

obese are more likely to be poor, have less education and, as a result, less

likely to take multivitamins containing folic acid.

 

(It is recommended that all women of childbearing age -- whether

they are trying to get pregnant or not -- get at least 0.4 milligrams of

folic acid daily. Folic acid is a synthetic version of folate, which is

found in leafy greens, legumes such as lentils and kidney beans, and orange

juice. It is added to products made with refined flour, such as white bread

and white pasta, and to cornmeal. Most multivitamins contain 0.4 mg of folic

acid, as well.)

 

Since fortification began in 1998, the incidence of neural-tube

defects in Canada has fallen by half, with some conditions, such as spina

bifida, falling 75 per cent; the incidence of the common childhood cancer

neuroblastoma has dropped by 60 per cent.

 

Because people who are obese often eat a diet rich in starchy foods,

such as white bread, pasta and baked goods, researchers initially believed

that fortification would greatly benefit obese women who became pregnant.

 

But the new study suggests that the damage wrought on the fetus by

fat outweighs the benefits of folic acid.

 

Still, despite the clear link between being overweight and

neural-tube defects, Dr. Ray said pregnant women should not diet or lose

weight because that risks doing more harm than good. The neural tube, which

later becomes the baby's spinal cord, spine and brain, forms in the first 28

days after conception, a time when most women don't yet know they are

pregnant.

 

" Weight loss during pregnancy will not make a positive difference, "

he said. There is also no evidence that weight gain during pregnancy

increases risk. Rather, Dr. Ray said, the research should serve as a

reminder that maintaining a healthy weight and healthy diet has many health

benefits, to both a woman and her baby.

 

The study showed that a woman weighing 85 kilograms (187 pounds) has

more than three times the risk of a having a baby with a neural-tube defect

as a woman weighing 52 kilos (115 pounds). Or, put another way, for every 10

kilos of extra weight she is carrying, a woman's risk increases 20 per cent.

 

The study was conducted using records from all Ontario women who

underwent maternal screening during their pregnancies between 1994 and 2000.

 

There are three principal neural-tube defects: spina bifida, when

the spinal cord and backbone don't develop properly; anencephaly, when the

brain doesn't fully develop; and encephalocele, when a portion of the brain

protrudes from the skull.

 

© Copyright 2005 Bell Globemedia Publishing Inc. All Rights

Reserved.

 

http://www.theglobeandmail.com/ealth/

 

 

 

 

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