WINNIPEG – Some women are still trying to sell their breast milk online despite concerns from Health Canada about possible disease transmission and contamination.

One new mother in Winnipeg, who recently had to retract an online ad for her milk, says it is the only way to ensure that her surplus breast milk can get to babies who need it.

“Everyone knows that breast milk is best (for infants) … so I figured that if someone else could use it, by all means I would be willing to sell it or potentially give it away,” said Sara Wiens, who gave birth to her son Simon last October.

Simon was born with Down syndrome. His slow muscle development makes it hard for him to swallow, so doctors urged Wiens to pump her milk so that it could be tube-fed to Simon. Wiens later discovered that Simon had an allergy to the protein in cow’s milk and stopped eating dairy products herself, but that meant the breast milk she had already pumped could not be given to her son.

Wiens put a classified ad on the Kijiji website, seeking up to $500 for three-months’ worth of milk, but was told earlier this month to pull the ad because Kijiji forbids sales of bodily fluids.

Wiens is not alone. A quick scan of Kijiji this week turned up a similar ad from someone in Toronto seeking $2 an ounce for her milk, and another in Ottawa asking for $3 an ounce. There are other international websites, such as Onlythebreast.com, that have message boards dedicated to matching breast milk donors with potential buyers.

Many of the sellers say they are producing more milk than their children need, while many buyers are mothers who cannot produce enough milk on their own and who don’t want to use formula.

The federal government has a long-standing position of “not recommending” private sales of human breast milk. Viruses, such as HIV, and bacteria can be transmitted through breast milk, as well as traces of prescription and non-prescription drugs, Health Canada says.

And there are other risks.

“Improper hygiene when extracting the milk, as well as improper storage and handling, could also cause these products to spoil or be contaminated,” Philippe Laroche, a Health Canada spokesman, said in an email this week.

Women in British Columbia have another option. The B.C. Women’s Milk Bank, the only facility of its kind in Canada, screens donor mothers for HIV, hepatitis and other diseases and pasteurizes donated milk. People who want to receive the donated milk require a doctor’s prescription.

Wiens believes similar banks should be available in other cities.

“If every major city could have something like that, then all the preemies in the hospital could benefit from that,” she said. “Babies can use it.”

In the meantime, Wiens said she’s willing to undergo blood tests and provide character references to potential buyers.

“If people are trusting of me and of my milk, than by all means (the sale) should be between me and them.”

SAN DIEGO – More than 30 years after the world greeted its first “test-tube” baby with a mixture of awe, elation and concern, researchers say they are finding only a few medical differences between these children and kids conceived in the traditional way.

More than 3 million children have been born worldwide as a result of what is called assisted reproductive technology, and injecting sperm into the egg outside the human body now accounts for about 4 per cent of live births, researchers reported Sunday at the annual meeting of the American Association for the Advancement of Science.

The majority of assisted reproduction children are healthy and normal, according to researchers who have studied them. Some of these children do face an increased risk of birth defects, such as neural tube defects, and of low birth weight, which is associated with obesity, hypertension and Type 2 diabetes later in life, the researchers said.

“Overall, these children do well,” said Andre Van Steirteghem of the Brussels Free University Center for Reproductive Medicine in Belgium. “It is a reassuring message, but we must continue to follow up.”

Carmen Sapienza, a geneticist at Temple University School of Medicine in Philadelphia, noted that few of these test tube children are older than 30, so it’s not known if they will be obese or have hypertension of other health problems at age 50 or older.

Sapienza said researchers found differences in 5 per cent to 10 per cent of chromosomes between assisted reproduction children and other kids.

What’s not clear is whether these differences result in some way from assisted reproduction techniques or if they stem from other factors, perhaps ones that caused the couple’s infertility in the first place.

Only a small fraction of the assisted reproduction children were outside the normal range of gene expression, Sapienza reported. “However, because some of the genes found to be affected are involved in the development of fat tissue and the metabolism of glucose, it will be interesting to monitor these children, long term to determine whether they have higher rates of obesity or diabetes.”

“There are genetic causes of infertility that you can bypass now,” Van Steirteghem said. “But this may mean that the next generation will be infertile, and that is something that all clinics should mention.”

One factor in low birth weight may be that in many cases assisted fertility results in multiple births, which tend to be early and of lower weight.

“We must reduce the epidemic of multiple births,” Van Steirteghem said, noting that in Sweden the rate had been cut from around 30 per cent in the early 1990s to about 5 per cent today.

In the United States, the Society for Assisted Reproductive Technology reported that the use of a single embryo transfer is increasing the percentage of triplet births is down to below 2 per cent.

Sapienza noted that women seeking assisted reproduction tend to be older than those who conceive naturally, but said that had been controlled for in the studies comparing the two groups of children.

Dolores J. Lamb of the Baylor College of Medicine in Houston urged more testing of males for the reason for infertility.

“There are correctable causes of male infertility and a couple can then have children the natural way,” she said. Also, infertility can be the first symptom of diseases such as testicular cancer, Lamb said.

As of 2008, the most recent data available, the United States reported that 361 clinics did 140,795 treatment cycles leading to the birth of 56,790 babies.

-

On the Net:

AAAS: http://www.aaas.org

EDMONTON – An Alberta judge has given the parents of a brain-damaged infant more time to consult with medical experts to review whether their son should be unhooked from life support.

Rebecka May, mother of baby Isaiah May, said Friday that she and her husband should have a much better idea of their infant son’s prognosis when they return to Court of Queen’s Bench on March 11.

“We should have the answers by then,” May said outside court.

“Of course, I want all the time I can with him, but we hope to gain the most knowledge we can in that time and get the most questions answered and then be able to make an informed decision.”

The baby was born last October with severe brain damage after his umbilical cord got wrapped around his throat, which deprived him of oxygen.

Doctors at Edmonton’s Stollery Children’s Hospital were planning to disconnect Isaiah from a ventilator on Jan. 20, but his parents persuaded a judge to give them time to get a second opinion.

Dr. Richard Taylor, a neonatologist from Victoria General Hospital, has agreed to examine the boy, but has just started reviewing the file and only arrived in Edmonton on Thursday. Taylor will return to Victoria to consult with colleagues before delivering his report.

Meanwhile, the Mays are trying to line up a second expert – which hasn’t been easy, said their lawyer Rosanna Saccomani. Some doctors are reluctant to get involved in a case that has attracted so much media attention; some charge fees beyond the Mays’ means.

“One doctor quoted us $750 an hour,” she said. “That’s prohibitive.”

Taylor is not charging a fee, May said.

Saccomani said the family may reach a decision by the next court date or they may not – they just want to take their time to ensure they’ve got the best advice.

“We don’t want to rush anything,” she said. “There’s no need to rush things. We’re hoping to have an answer sooner rather than later but we want the proper time to be taken so the family gets all the answers they need.”

Meanwhile, while baby Isaiah’s condition hasn’t changed much, he continues to grow and do well, said Rebecka May, 23.

“Everything is mostly the same. He has taken some breaths over the ventilator. He’s growing, he gains weight, he’s doing well overall.”

Father Isaac May, 22, said his son now weighs 5.5 kilograms.

“He looks like a perfect little boy,” said Isaac.

“We’ve had our ups and downs, of course, but the last few weeks have been pretty good. We’ve been able to have a break from everything and relax and spend a lot of time with Isaiah.”

WINNIPEG – A Manitoba politician is pushing for more measures to protect consumers after another Winnipeg store recently sold expired baby food.

NDP’s Judy Wasylycia-Leis, MP for Winnipeg North, says “the expiry date has to mean something.” Heather Benci said her family unknowingly bought baby formula that was more than six months past its expiry date at a Superstore.

Last November, Jose Edmond’s son, Jacob, became ill after consuming expired baby formula bought from a Winnipeg drug store.

That story prompted Benci to shop elsewhere but her family’s purchase of expired baby food has made her concerned.

Superstore’s head office said in a statement that there are procedures that check for products near expiration and to discard them once the date has passed.

“Independent auditors also conduct regular spot checks throughout the year. A rigorous reinforcement of this process is underway with the staff at this store,” the store said in its statement.

Wasylycia-Leis says the Canadian Food Inspection Agency and Health Canada should do more to protect Canadians by designating an absolute safe period for expiry dates and ensuring inspectors are checking that expired food is taken off shelves.

“We need to do something and I will look at a private member’s bill or motion to get the government to say what is that safe period of time and let retailers know that,” says Wasylycia-Leis.

The Canadian Food Inspection Agency investigates complaints of expired baby formula on store shelves but says its inspectors need to confirm and find the expired product in a store to take action against a retailer.

Wasylycia-Leis says that passes the burden of food safety onto the consumer and that needs to change.

Some of mankind’s most devastating inherited diseases appear to be declining, and a few have nearly disappeared, because more people are using genetic testing to decide whether to have children.

Births of babies with cystic fibrosis, Tay-Sachs and other less familiar disorders seem to have dropped since testing came into wider use, The Associated Press found from interviews with numerous geneticists and other experts and a review of the limited research available.

Many of these diseases are little known and few statistics are kept. But their effects – ranging from blood disorders to muscle decline – can be disabling and often fatal during childhood.

Now, more women are being tested as part of routine prenatal care, and many end pregnancies when diseases are found. One study in California found that prenatal screening reduced by half the number of babies born with the severest form of cystic fibrosis because many parents chose abortion.

More couples with no family history of inherited diseases are getting tested before starting families to see if they carry mutations that put a baby at risk. And a growing number are screening embryos and using only those without problem genes.

The cost of testing is falling, and the number of companies offering it is rising. A 2008 federal law banning gene-based discrimination by insurers and employers has eased fears.

Genetic testing pushes hot-button issues: abortion, embryo destruction and worries about eugenics – selective breeding to rid a population of unwanted traits. Yet it is touching a growing number of people:

-In suburban Cleveland, Beth and Thad Meese were stunned to learn during her second pregnancy that they carry genes that can cause cystic fibrosis. Tests show the baby won’t have the disease, but they have decided against having a third child or to screen embryos if they do. “I feel like we got lucky” and should not tempt fate again, she said.

-In Boston, Harvard psychologist and author Steven Pinker and his wife, novelist Rebecca Goldstein, learned last year that they carry genes that cause a serious neurological disease, familial dysautonomia. Too old to have children, they shared the news with younger relatives, who are being tested to see if they, too, have the gene. “There’s a tendency psychologically to think these are very rare and what are the chances that two people could both have rare genes,” Pinker said. “Not only can it happen, but it happened to me.”

-In the Canadian city of Vancouver, Jeff and Megan Carroll screened embryos to have two children free of the Huntington’s disease gene Jeff has. “I felt very strongly that I didn’t want to pass on this,” he said. Huntington’s “is done killing people in my family when I am gone.”

Although genetic testing can raise moral dilemmas, at least one conservative religious group – Orthodox Jews – has found ethically acceptable ways to use it to lessen diseases that have plagued its populations.

“I am a Holocaust survivor. I was born in the middle of the second World War. I hope that I am not a suspect for practicing eugenics. We are trying to have healthy children,” said Rabbi Josef Ekstein of New York, who founded a group that tests couples and discourages matches when both carry problem genes.

Some diseases – sickle cell, cystic fibrosis, Tay-Sachs, thalassemia, spinal muscle atrophy – occur when people inherit two bad genes, one from each parent. The genes can pass quietly for generations until two carriers mate; then children have a one-in-four chance of getting the disease.

(Down syndrome is the best known disorder for which prenatal testing has long been available, but it’s caused by an extra chromosome during abnormal cell division – not genes inherited from the parents.)

Statistics for inherited diseases are hard to come by – birth certificates often don’t list them, and they sometimes aren’t diagnosed for months or years after birth. Yet, there’s little doubt that testing has put a dent in many.

“We’re definitely seeing decreased rates of certain genetic disorders as a result of carrier screening,” said Dr. Wendy Chung, clinical genetics chief at Columbia University. In five years, she has seen only one case of Tay-Sachs, a neurological disease that used to be more common in Ashkenazi, or Eastern European Jews. Children with the disease lack a key enzyme; they lose mental and physical abilities and usually die by age 4.

In the last decade, only about a dozen new cases of Tay-Sachs occurred each year in the United States, said Dr. Michael Kuback, a professor at the University of California at San Diego who tracks the disease.

Ekstein, the rabbi, lost four children to it before founding Dor Yeshorim, a Brooklyn-based group that recruits Jews to be tested. Using confidential PIN numbers, they call a hotline to see if a prospective mate would be a risky match. The group has 300,000 members and tests for nine diseases, including cystic fibrosis.

“In the Orthodox Ashkenazi community around the world, we virtually have wiped out the diseases we screen for,” said the group’s development director, Allan Binder.

One is familial dysautonomia. Since 2004, only a few children worldwide have been born with it each year, and it soon may cease to exist because of genetic screening, said Dr. Barron Lerner, a Columbia University medical historian. The disease causes faulty nerve development, floppy muscles, digestive and other problems, and kills many by young adulthood.

Fragile X syndrome, the leading cause of mental impairment in boys, may decline because carrier testing for parents and prenatal testing of fetuses is now available for it, said Barbara Biesecker, director of the genetic counselling program at the National Institutes of Health.

Lots of eyes are on cystic fibrosis, a disease that causes sticky mucus buildup in the lungs, digestive problems and death in young adulthood. More than 10 million Americans – one in 25 to 29 whites, who are more at risk for it than blacks – carry a gene mutation for it. In 2001, the American College of Obstetricians and Gynecologists and other groups recommended that white pregnant women be offered testing for mutations. Tests on partners and fetuses often followed, and an unknown number of abortions.

The impact showed up two years later in Massachusetts, one of the few states testing newborns for the disease at the time. Births of babies with cystic fibrosis dropped, from 29 in 2000 to only 10 in 2003, ticking up to 15 in 2006, said Dr. Richard Parad, a Brigham and Women’s Hospital physician who helped set up the screening program.

In California, Kaiser Permanente, a large health maintenance organization, offered prenatal screening. From 2006 through 2008, 87 couples with cystic fibrosis mutations agreed to have fetuses tested, and 23 were found to have the disease. Sixteen of the 17 fetuses projected to have the severest type of disease were aborted, as were four of the six fetuses projected to have less severe disease.

Comparisons to couples not given prenatal screening suggested that screening had cut births of babies with severe disease in half, researchers reported at a genetics conference in 2008. Studies in Canada, Italy, Australia and in Europe also found that cases dropped after screening began.

The Cystic Fibrosis Foundation’s registry, which tracks voluntarily reported cases, shows a steady rise in recent years. But that is because more states have started testing all newborns, discovering cases that previously went unreported, some researchers believe. In December, Texas became the final state to add such testing; the first reliable national estimate of cases is expected in a couple of years.

Beth Meese, the Cleveland nurse who discovered from prenatal tests that she and her husband are carriers, wishes they had been screened before pregnancy. By the time they learned of their risk, they had seen an ultrasound and decided to have the baby no matter what its tests showed.

“We saw the baby, saw it moving,” she said. “It makes that decision that much more difficult to make.”

Gene testing hasn’t led to declines in all diseases. Sickle cell, a blood disorder that causes anemia and pain and raises the risk of stroke, has not dropped. It mostly afflicts blacks; gene carriers are said to have sickle cell “trait,” which sounds harmless.

“Now we’re actually learning that it’s not as benign as we thought it was,” and that carriers have higher risks for certain medical problems, said Dr. Lanetta Jordan, a Florida physician and chief medical officer of the Sickle Cell Disease Association of America.

Newborn screening is finding more sickle cell carriers and cases, but this doesn’t seem to affect parents’ future family plans, Jordan said.

Gene testing also has had little impact on Huntington’s disease, a progressive, fatal neurological disorder. Unlike many other inherited diseses, only one bad copy of a gene is needed to cause Hungtington’s, and symptoms don’t usually appear until middle age, after many have already had children.

Fewer than 15 per cent of people in families with a history of it agree to be tested, said Kimberly Quaid, an Indiana University genetics researcher.

“They just prefer to live their life and hope for the best,” she said.

Jeff Carroll, the Canadian who, with his wife, screened embryos because he carries the Huntington’s gene, said it is “unconscionable” to procreate without taking steps to prevent passing on the disease. “Having my test result has immensely improved my life. I was able to make reproduction decisions that ended HD in my family,” and to launch a career as a biologist researching the disease, he said.

The number of fertility treatments that include embryo screening has been on the rise in recent years, with nearly 5,200 screenings in 2006, according to the Society for Assisted Reproductive Technology. Carrier testing also is rising. A California company, Counsyl, sells a $349 saliva test for genes for more than 100 inherited disorders. Several thousand people used it over the last year, the company reports.

Eliminating disease is a noble goal but also “should give us pause,” Lerner, the Columbia historian, wrote recently in the New England Journal of Medicine.

“If a society is so willing to screen aggressively to find these genes and then to potentially to have to abort the fetuses, what does that say about the value of the lives of those people living with the diseases?” he asked.

It’s a touchy issue. The Cystic Fibrosis Foundation points out that the disease varies greatly in severity, and life expectancy with it is now 37 years.

Diseases like familial dysautonomia and Tay-Sachs, which kill before school age, are easier cases. If one of those vanishes, “thank God,” said Rabbi Ekstein of the Jewish testing group. “It gives me a very good feeling that we are a part of such life-saving efforts.”

-

On the Net:

March of Dimes: www.marchofdimes.com/pnhec/4439.asp

National Human Genome Research Institute: www.genome.gov/19516567

American College of Medical Genetics: www.acmg.net

Some of mankind’s most devastating inherited diseases appear to be declining, and a few have nearly disappeared, because more people are using genetic testing to decide whether to have children.

Births of babies with cystic fibrosis, Tay-Sachs and other less familiar disorders have dropped since testing came into wider use, The Associated Press found from a review of studies and interviews with numerous geneticists and other experts and a review of the limited research available.

Many of these diseases are little known and few statistics are kept. But their effects – ranging from blood disorders to muscle decline – can be disabling and often fatal during childhood.

Now, more women are being tested as part of routine prenatal care, and many end pregnancies when diseases are found. One study in California found that prenatal screening reduced by half the number of babies born with the severest form of cystic fibrosis because many parents chose abortion.

More couples with no family history of inherited diseases are getting tested before starting families to see if they carry mutations that put a baby at risk. And a growing number are screening embryos and using only those without problem genes.

The cost of testing is falling, and the number of companies offering it is rising. A 2008 federal law banning gene-based discrimination by insurers and employers has eased fears.

Genetic testing pushes hot-button issues: abortion, embryo destruction and worries about eugenics – selective breeding to rid a population of unwanted traits. Yet it is touching a growing number of people:

-In suburban Cleveland, Beth and Thad Meese were stunned to learn during her second pregnancy that they carry genes that can cause cystic fibrosis. Tests show the baby won’t have the disease, but they have decided against having a third child or to screen embryos if they do. “I feel like we got lucky” and should not tempt fate again, she said.

-In Boston, Harvard psychologist and author Steven Pinker and his wife, novelist Rebecca Goldstein, learned last year that they carry genes that cause a serious neurological disease, familial dysautonomia. Too old to have children, they shared the news with younger relatives, who are being tested to see if they, too, have the gene. “There’s a tendency psychologically to think these are very rare and what are the chances that two people could both have rare genes,” Pinker said. “Not only can it happen, but it happened to me.”

-In Vancouver, Jeff and Megan Carroll screened embryos to have two children free of the Huntington’s disease gene Jeff has. “I felt very strongly that I didn’t want to pass on this,” he said. Huntington’s “is done killing people in my family when I am gone.”

Although genetic testing can raise moral dilemmas, at least one conservative religious group – Orthodox Jews – has found ethically acceptable ways to use it to lessen diseases that have plagued its populations.

“I am a Holocaust survivor. I was born in the middle of the Second World War. I hope that I am not a suspect for practising eugenics. We are trying to have healthy children,” said Rabbi Josef Ekstein of New York, who founded a group that tests couples and discourages matches when both carry problem genes.

Some diseases – sickle cell, cystic fibrosis, Tay-Sachs, thalassemia, spinal muscle atrophy – occur when people inherit two bad genes, one from each parent. The genes can pass quietly for generations until two carriers mate; then children have a one-in-four chance of getting the disease.

(Down syndrome is the best known disorder for which prenatal testing has long been available, but it’s caused by an extra chromosome during abnormal cell division – not genes inherited from the parents.)

Statistics for inherited diseases are hard to come by – birth certificates often don’t list them, and they sometimes aren’t diagnosed for months or years after birth. Yet, there’s little doubt that testing has put a dent in many.

“We’re definitely seeing decreased rates of certain genetic disorders as a result of carrier screening,” said Dr. Wendy Chung, clinical genetics chief at Columbia University. In five years, she has seen only one case of Tay-Sachs, a neurological disease that used to be more common in Ashkenazi, or Eastern European Jews. Children with the disease lack a key enzyme; they lose mental and physical abilities and usually die by age four.

In the last decade, only about a dozen new cases of Tay-Sachs occurred each year in the United States, said Dr. Michael Kuback, a professor at the University of California at San Diego who tracks the disease.

Ekstein, the rabbi, lost four children to it before founding Dor Yeshorim, a Brooklyn-based group that recruits Jews to be tested. Using confidential PIN numbers, they call a hotline to see if a prospective mate would be a risky match. The group has 300,000 members and tests for nine diseases, including cystic fibrosis.

“In the Orthodox Ashkenazi community around the world, we virtually have wiped out the diseases we screen for,” said the group’s development director, Allan Binder.

One is familial dysautonomia. Since 2004, only a few children worldwide have been born with it each year, and it soon may cease to exist because of genetic screening, said Dr. Barron Lerner, a Columbia University medical historian. The disease causes faulty nerve development, floppy muscles, digestive and other problems, and kills many by young adulthood.

Fragile X syndrome, the leading cause of mental impairment in boys, may decline because carrier testing for parents and prenatal testing of fetuses is now available for it, said Barbara Biesecker, director of the genetic counselling program at the National Institutes of Health.

Lots of eyes are on cystic fibrosis, a disease that causes sticky mucus buildup in the lungs, digestive problems and death in young adulthood. More than 10 million Americans – one in 25 to 29 whites, who are more at risk for it than blacks – carry a gene mutation for it. In 2001, the American College of Obstetricians and Gynecologists and other groups recommended that white pregnant women be offered testing for mutations. Tests on partners and fetuses often followed, and an unknown number of abortions.

The impact showed up two years later in Massachusetts, one of the few states testing newborns for the disease at the time. Births of babies with cystic fibrosis dropped, from 29 in 2000 to only 10 in 2003, ticking up to 15 in 2006, said Dr. Richard Parad, a Brigham and Women’s Hospital physician who helped set up the screening program.

In California, Kaiser Permanente, a large health maintenance organization, offered prenatal screening. From 2006 through 2008, 87 couples with cystic fibrosis mutations agreed to have fetuses tested, and 23 were found to have the disease. Sixteen of the 17 fetuses projected to have the severest type of disease were aborted, as were four of the six fetuses projected to have less severe disease.

Comparisons to couples not given prenatal screening suggested that screening had cut births of babies with severe disease in half, researchers reported at a genetics conference in 2008. Studies in Canada, Italy, Australia and in Europe also found that cases dropped after screening began.

The Cystic Fibrosis Foundation’s registry, which tracks voluntarily reported cases, shows a steady rise in recent years. But that is because more states have started testing all newborns, discovering cases that previously went unreported, some researchers believe. In December, Texas became the final state to add such testing; the first reliable national estimate of cases is expected in a couple of years.

Beth Meese, the Cleveland nurse who discovered from prenatal tests that she and her husband are carriers, wishes they had been screened before pregnancy. By the time they learned of their risk, they had seen an ultrasound and decided to have the baby no matter what its tests showed.

“We saw the baby, saw it moving,” she said. “It makes that decision that much more difficult to make.”

Gene testing hasn’t led to declines in all diseases. Sickle cell, a blood disorder that causes anemia and pain and raises the risk of stroke, has not dropped. It mostly afflicts blacks; gene carriers are said to have sickle cell “trait,” which sounds harmless.

“Now we’re actually learning that it’s not as benign as we thought it was,” and that carriers have higher risks for certain medical problems, said Dr. Lanetta Jordan, a Florida physician and chief medical officer of the Sickle Cell Disease Association of America.

Newborn screening is finding more sickle cell carriers and cases, but this doesn’t seem to affect parents’ future family plans, Jordan said.

Gene testing also has had little impact on Huntington’s disease, a progressive, fatal neurological disorder. Unlike many other inherited diseases, only one bad copy of a gene is needed to cause Hungtington’s, and symptoms don’t usually appear until middle age, after many have already had children.

Fewer than 15 per cent of people in families with a history of it agree to be tested, said Kimberly Quaid, an Indiana University genetics researcher.

“They just prefer to live their life and hope for the best,” she said.

Jeff Carroll, the Vancouver man who, with his wife, screened embryos because he carries the Huntington’s gene, said it is “unconscionable” to procreate without taking steps to prevent passing on the disease. “Having my test result has immensely improved my life. I was able to make reproduction decisions that ended HD in my family,” and to launch a career as a biologist researching the disease, he said.

The number of fertility treatments that include embryo screening has been on the rise in recent years, with nearly 5,200 screenings in 2006, according to the Society for Assisted Reproductive Technology. Carrier testing also is rising. A California company, Counsyl, sells a $349 saliva test for genes for more than 100 inherited disorders. Several thousand people used it over the last year, the company reports.

Eliminating disease is a noble goal but also “should give us pause,” Lerner, the Columbia historian, wrote recently in the New England Journal of Medicine.

“If a society is so willing to screen aggressively to find these genes and then to potentially to have to abort the fetuses, what does that say about the value of the lives of those people living with the diseases?” he asked.

It’s a touchy issue. The Cystic Fibrosis Foundation points out that the disease varies greatly in severity, and life expectancy with it is now 37 years.

Diseases like familial dysautonomia and Tay-Sachs, which kill before school age, are easier cases. If one of those vanishes, “thank God,” said Rabbi Ekstein of the Jewish testing group. “It gives me a very good feeling that we are a part of such life-saving efforts.”

-

On the Net:

March of Dimes: www.marchofdimes.com/pnhec/4439.asp

National Human Genome Research Institute: www.genome.gov/19516567

American College of Medical Genetics: www.acmg.net

TORONTO – About 60 would-be parents rallied outside the Ontario legislature Monday to mark the province’s second annual Family Day by requesting government funding for in vitro fertilization treatments, which cost about $10,000 per cycle.

The rally was organized by Conceivable Dreams, which represents 1,100 couples who cannot conceive without medical assistance. The problem affects one in six Ontario couples, the group says, but still carries a stigma that leaves many uncomfortable even talking about it.

Quebec and Manitoba fund the expensive IVF treatments, infertility patient Jane Evans of Toronto told the rally. She and her husband considered moving to Quebec to try to start their family.

“Last year we finally told our parents what we had been going through and how hopeful we were that the (Ontario) government would fund IVF so we could have a baby here and wouldn’t have to move to Quebec,” she said.

“Both sets of grandparents were shocked that we would consider moving out of province, and each offered to help us pay for IVF, so we scraped together enough money for one cycle of IVF as well as all of the drugs. One chance.”

It’s a very emotional experience now that she’s in the middle of the one round of IVF treatment her family can afford, said Evans.

“I’m excited and terrified: excited that our dream might come true this month, and terrified that it might not.”

Two Ontario government-ordered reviews of in vitro fertilization have recommended the province fund up to three rounds of treatments.

Funding IVF would reduce instances of costly multiple births and save the province about $550 million over 10 years, said Dr. Art Leader, professor of medicine at the University of Ottawa and a member of the government’s expert panel.

“By linking funding to single embryo transfer we can bring happiness to tens of thousands of Ontarians, and at the same time reduce the multiple birth rate – the highest in Canada,” said Leader, the father of a daughter conceived through IVF.

“This approach will save the province hundreds of millions of dollars, enough to pay for the added costs of IVF care.”

Ontario women wait too long before trying infertility treatments “because they can’t afford them until later in life,” added Leader. At age 38, the live birth rate after in vitro fertilization is 11 per cent, compared to 40 per cent at age 35.

“Premier McGuinty, follow through on your promise to ease the suffering of those who long to build a family but cannot do so,” Leader said to cheers from the prospective parents at the rally.

However, Health Minister Deb Matthews said Friday that the Liberal government only promised to study IVF, not to fund it, and is reviewing the studies’ recommendations while also keeping an eye on the record $24.7-billion deficit.

“They make a pretty compelling case that (funding IVF) is the right thing to do,” Matthews said. “But we really do have to look at it in the context of the fiscal reality in which we’re all living.”

The financial argument doesn’t hold water, said opposition critics.

“The only argument we get from the McGuinty Liberals is about money,” said New Democrat Cheri DiNovo. “It’s not about ethics, it’s about money, and even that argument is fallacious because it would actually save money to fund IVF.”

It’s better financially to fund IVF so Ontario doesn’t have so many multiple births and the complications that come with that, said Progressive Conservative critic Christine Elliott.

“From a purely dollar and cents standpoint, it makes sense, but over and above that, it’s just the right thing to do,” said Elliott.

TORONTO – A group representing more than 1,100 Ontario couples who need help conceiving a child plan to rally outside the legislature Monday, the second annual Family Day holiday, to demand provincial funding for in vitro fertilization treatments.

The Liberal government has commissioned two in-depth studies of the issue, both of which recommended the Ontario Health Insurance Plan cover the IVF treatments, which can cost up to $10,000 per cycle, said Joanne Horibe, co-founder of Conceivable Dreams.

“Infertility is a serious medical condition with huge economic, social and personal consequences,” Horibe told the legislature’s finance committee during recent pre-budget hearings.

“One in six Ontario couples struggles with infertility.”

In vitro fertilization is one of the safest and most effective infertility treatments, said Horibe.

“It can control the number of embryos implanted, and therefore ensure that one healthy baby is delivered at a time,” she said.

“Many Ontarians could conceive through the use of IVF, but the cost is beyond the financial reach of most families.”

Many couples undergo three rounds of IVF treatment, at a total cost of about $30,000, said Horibe, who postponed her own wedding to save money for the treatments.

“We spent tens of thousands of dollars on drugs and treatment and suffered disappointment and heartbreak to pursue our dream of having a family,” she said.

Premier Dalton McGuinty made an election promise to help the more than 350,000 infertile couples in Ontario build a family, but nothing has been done despite two studies showing IVF funding would reduce multiple pre-term births, and save taxpayers’ money in long-term health costs, said Horibe.

“Ontario could save $400 to $550 million over the next 10 years by tying public funding of IVF to more stringent criteria, limiting the number of embryos transferred and therefore reducing the incidents of multiple births,” she said.

“By providing upfront access to optimal, regulated infertility treatment, the government will avoid most of these back-end costs.”

The government did not promise to fund in vitro fertilization treatments in its 2007 election campaign platform, said Health Minister Deb Matthews.

“What we promised to do is look at it, and that’s exactly what we’re in the middle of doing right now,” Matthews said in an interview.

“No decision has been made.”

Many infertile families resort to less effective and more dangerous alternatives to IVF, such as ovarian stimulation with hormone injections, to boost their odds of getting pregnant, said Horibe.

In Ontario, the rate of multiple births resulting from assisted reproduction technologies is estimated to be 27.5 per cent.

“These less than optimal treatments significantly increase the risk of multiple, pre-term births and severe medical and developmental problems,” she said.

“The McGuinty government’s expert panel concluded that public funding of IVF will not only improve the health of mothers and babies, but it will also reduce hospital and other health-care costs.”

The expert panel made a good case for IVF funding, admitted Matthews, but the huge budget deficit will limit the government’s ability to respond to the demand by Conceivable Dreams.

“They make a pretty compelling case that it’s the right thing to do,” said Matthews. “But we really do have to look at it in the context of the fiscal reality in which we’re all living.”

Organizers expect about 100 people to attend Monday’s rally at the legislature, where they will stand in front of oversized building blocks spelling out how much taxpayers can save by funding IVF.

VANCOUVER, B.C. – Cheese wraps, urine poultices, cell cures – when it comes to injuries, elite athletes can be game for some pretty out-there therapies.

That propensity came to light this week when U.S. Alpine skiing star Lindsey Vonn, widely predicted to be the “It Girl” of the Vancouver Games, announced she had been wrapping her right leg in cheese – a European curd cheese – to treat a deep bruise that could stand between her and Olympic glory.

The therapy, from which the U.S. Olympic team’s chief doctor quickly distanced himself, was administered in Austria. That’s where Vonn sustained her injury and where the curd cheese, topfen, is apparently hailed for anti-inflammatory properties.

There doesn’t appear to be any scientific evidence to suggest the cheese has those or any other medicinal powers. PubMed.gov, an online database of published medical studies maintained by the U.S. National Library of Medicine, draws a blank in a search for “topfen.”

But that hasn’t stopped other members of the U.S. ski team from trying the cure, which is also, a Google search reveals, used to treat mastitis, a painful inflammation of breast tissue that sometimes afflicts breastfeeding women.

“I don’t have a lot of experience with it. I know a lot of the athletes on the U.S. ski team . . . have had a good experience with it,” Dr. Bill Sterrett, the team’s physician, said with no audible note of cynicism Wednesday.

Sterrett certainly wouldn’t be the first physician looking after athletes to be asked to administer, endorse or at least oversee a therapy that’s not taught in medical schools.

“I’ve heard of stranger,” Dr. Bob McCormack, chief medical officer for the Canadian Olympic team, said Thursday when asked about Vonn’s cheese nostrum.

“I remember one of our athletes coming to a previous Games, a young athlete who was told by her coach, for her sprained ankle, what she needed to do was urinate in a rag and wrap her ankle in the urine-soaked rag.”

“The idea was the uric acid would drain out the swelling. That’s an example of something that’s been used in Eastern Europe, a little bit more in the past,” said McCormack, who is an orthopedic surgeon from Vancouver.

McCormack said while he sees no reason why poultices of curd cheese or the urine equivalent of a mustard plaster would help speed recovery of a bruised shin or a sprained ankle, he doesn’t object if the remedy isn’t going to make the injury worse or trip a positive doping test.

“For me, the issue is, ‘Will it do harm to the athlete and is it performance enhancing from the WADA perspective?’ he said, referring to the World Anti-Doping Agency. “Cheese curd falls into neither of the those (categories).”

“I can’t see it doing any harm and if the athlete believes in it, I am OK with it,” he added, noting there are lots of such remedies in use.

The willingness of Sterrett and McCormack to go along with treatments that seem at odds with evidence-based medicine probably lies in the latter’s comment about an athlete’s faith in a given remedy.

People who treat elite athletes agree the placebo effect is strong in this highly motivated group of individuals.

Sometimes, though, the remedies they latch on to aren’t as benign as curd cheese and urine soaked rags.

Dr. Harm Kuipers, a physician and professor of exercise physiology at the University of Maastrict in the Netherlands, once treated a cyclist who sought Kuipers’ help when he developed symptoms of having over-trained.

There was no obvious explanation for his decline in performance and the problem was a mystery until the man noted in passing that his symptoms started around the time he had what he called a “cell cure.”

From what Kuipers could tell, the man had had a series of injections of some unidentified animal proteins. After the first, he felt fine. After the second, he felt a bit uncomfortable. After the third, the man told Kuipers, he felt very sick and actually thought he was going to die.

“I said, ‘Well, congratulations, you had an anaphylactic shock,”‘ Kuipers said, referring to a form of severe allergic reaction that can be fatal.

Said Kuipers: “I’ve seen and heard a lot of strange and crazy things.”

Canadian figure skater Patrick Chan knows about injuries. But when he injured his calf last fall, he couldn’t test out the cheese cure. He didn’t know about it.

“I’d be too hungry, I’d eat the cheese before I’d let it settle.” he quipped Thursday. “I’ve never heard of that. It sounds cool though.”

-with files from Donna Spencer and Lori Ewing in Vancouver

WASHINGTON – A critical safety net for babies – that heelprick of blood taken from every newborn in the U.S. – is facing an ethics attack.

After those tiny blood spots are tested for a list of devastating diseases, some states are storing them for years. Scientists consider the leftover samples a treasure, both to improve newborn screening and to study bigger questions, like which environmental toxins can harm a fetus’s developing heart or which genes trigger childhood cancers.

But seldom are parents asked to consent to such research – most probably do not know it occurs – raising privacy concerns that are shaking up one of public health’s most successful programs. Texas is poised to throw away blood samples from more than five million babies to settle a lawsuit from parents angry at what they call secret DNA warehousing. A judge recently dismissed a similar lawsuit in Minnesota.

Michigan just moved four million leftover blood spots into a new “BioTrust for Health,” planning a public education campaign about the research potential and how families can opt out.

Advisers to the U.S. government hope to have national recommendations in two months on how to assure all babies still get their newborn tests while allowing parents more say in what happens next.

“It’s a critical thing that we take action,” says advisory board member Sharon Terry of the non-profit Genetic Alliance. She says distrust over the leftover blood spots threatens public confidence in newborn screening itself.

“The sunshine on the information – educating parents – is the way lesser threat. Done well and done right, there will be an enormous benefit overall to the system,” she says.

Newborn screening is not new. It began in the 1960s, and today every baby is supposed to be tested for at least 29 rare genetic diseases in hopes of catching the fraction who need early treatment to help avoid brain damage or death. Now being added to the list: Bubble-boy disease, formally known as SCID for severe combined immune deficiency.

The program catches about 5,000 babies a year in need of treatment.

Because newborn screening is mandatory, only a handful of states provide much upfront parent education. Leftover spots mainly are used for double-checking that newborn tests are accurate. Sometimes, families ask geneticists to study them after a child’s death from a disease doctors can’t immediately diagnose.

But as scientists sought to use the leftovers for broader research, suddenly the informing of parents – especially about long-stored spots – became an issue. While blood spots are stripped of identifying information before being handed over to scientists, people generally need to consent to participate in research.

“My kid is not a lab rat. You have to ask before you can use him in an experiment, before you can use his blood, his tissues, his DNA, whatever,” says Andrea Beleno, one of the Texas parents who sued. Among their worries: that genetic information about the children could fall into the wrong hands.

Had she only been asked, Beleno adds, she probably would have let her son’s blood spot be stored.

To scientists who pore through dusty warehouses in search of blood samples stored by health department ID codes – not the babies’ names – privacy concerns are exaggerated.

“There’s a gap between the name and the DNA. … There’s no way one could just put one’s hands on these blood spots and know anything about that person,” says Dr. Christopher Loffredo of Georgetown University, who needed families’ permission to cull about 1,200 blood spots stored in Maryland for a study that linked a pregnant woman’s smoking or exposure to certain chemical solvents to fetal heart defects.

Still, Dr. Jennifer Puck of the University of California, San Francisco, who created the new SCID test using leftover blood spots, understands parents’ concerns.

“DNA is your personal signature, and it uniquely identifies us,” Puck says. “We all have to become more careful and more specific in terms of what we’re going to do with the blood spots.”

Bioethicist Aaron Goldenberg of Case Western Reserve University studied parent attitudes, and found three-quarters would be willing to have their baby’s leftover blood spot used for research if they were asked first. But they generally oppose that research without consent.

The balancing act for states, he says, is separating the two issues – lifesaving newborn screening and other use of the leftover blood – in the little time available to educate parents.