Tuesday, March 10th, 2015
If given the choice, would you want to know about your child’s risk for hereditary diseases years before they surface?
A new advancement in technology, called whole genome sequencing, will now make that possible—and 58 percent of parents surveyed have already expressed interest in testing their children, according to a study conducted by the University of Michigan Health System.
Whole genome sequencing examines DNA using a small amount of blood or saliva in order to determine a risk of genetic disease, or to diagnose active diseases or their symptoms. The technology is currently being used for patients who have yet to be diagnosed but who are displaying symptoms.
The research, which appears in the journal Public Health Genomics, was conducted to gauge the population’s interest in using whole genome sequencing to discover their potential for certain genetic diseases (such as cancers or Alzheimer’s) in the future—and around 59 percent of the total population confirmed their interest while almost 62 percent showed interest for themselves, reports Science Daily. Also, nonparents who were planning to have their first child within the next five years were more interested in whole genome sequencing than current parents were.
As with the introduction of any new medical technology, there are always additional factors to consider. “While sequencing could reveal risk of a handful of rare and preventable diseases, authors note there is concern for how accurately the information would be interpreted and how useful it will actually be for patients,” notes Science Daily.
When it comes to testing children, some experts believe it should be delayed until the child is old enough to understand and participate in the decision themselves. Because a disease your child may be at risk for—but may not even end up having—could take years to emerge and certain cures may still be unavailable, early knowledge may not be beneficial. Instead of dwelling on an uncertain reality, making more healthful choices may be beneficial.
“We want our patients to be active participants in their health; however, the value of genome sequencing in helping individuals understand their disease risks is still controversial, especially for children,” said Daniel Dodson, the study’s lead author.
Caitlin St John is an Editorial Assistant for Parents.com who splits her time between New York City and her hometown on Long Island. She’s a self-proclaimed foodie who loves dancing and anything to do with her baby nephew. Follow her on Twitter: @CAITYstjohn
Image: DNA strand via Shutterstock
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Tuesday, February 3rd, 2015
Update (2/25/15): Parliament passed the bill on Tuesday, 2/24, making Britain the first country to officially embrace this three-parent IVF technique.
Early last year, we blogged about a fairly new and controversial IVF technique called the mitochondrial transfer procedure. The IVF technique allows a mother’s egg and father’s sperm to be fertilized along with another donor woman’s genes, essentially giving a baby genes from three parents.
The “three-parent” IVF technique benefited babies predisposed to genetic disorders because the donor’s genes (contained in donated mitochondria) could “cancel” out any defected genes. But naysayers were concerned about the ethics of gene manipulation and the morals of “customizing” a baby to fit certain specifications. (Think: Gattaca)
Despite the concerns, Britain became the first country to begin legalizing the IVF procedure. The House of Commons voted 382 to 128 to approve a bill that would make “three-parent” babies official in the U.K. A similar procedure was also created in the U.S. over a decade ago, and a few benefited from having three-parent genes. But the procedure was eventually banned, reports The Washington Post
Later this month, Parliament will vote on the bill. If it passes again, the IVF technique will be legal in Britain starting in October.
Sherry Huang is a Features Editor for Parents.com who covers baby-related content. She loves collecting children’s picture books and has an undeniable love for cookies of all kinds. Her spirit animal would be Beyoncé Pad Thai. Follow her on Twitter @sherendipitea
Photo: Test tubes indicating boy or girl babies via Shutterstock
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Tuesday, June 11th, 2013
Omegaven, a medication developed at Boston Children’s Hospital to save the lives of infants who cannot absorb nutrition, is stuck in the FDA approval process, apparently causing delays that leave parents and doctors alike frustrated and worried. The drug is a crucial part of treatment for Microvillus Inclusion Disease, a rare genetic condition in which a child cannot absorb fluid or nutrients except through a direct injection of a treatment called total parenteral nutrition, or TPN. TPN, however, can cause liver damage over time; Omegaven counters that damaging effect. More from NBC News:
The potentially life-saving medication Omegaven, an intravenous mixture made with fish oil, reduces the fatal fat accumulation in children’s livers caused by TPN. Fish oil contains anti-inflammatory omega-3 fatty acids, which have been shown to prevent fat buildup.
It is unclear when or whether Omegaven will be approved. The normal FDA process for approval is to test medications in large trials that randomly assign patients to receive either the new drug or a placebo. In fatal illnesses, that can present doctors with a tough ethical quandary: Do you do the science right and potentially lose some patients or just keep treating patients in research studies.
Not daunted by the lack of FDA approval, Sam [O’Connor's] family signed him up for a Boston Children’s Hospital research study looking at the new medication’s efficacy.
It didn’t take long to see results.
“For me, it was . . . the personality change,” Debra said. “To have him start responding to me and playing, it’s just like he’s actually a person again. You know, it’s almost like his life started at that point because before it was just enduring.”
Now 5, Sam is one of the lucky ones because he was able to get the drug he needed. Other children aren’t so lucky, says Puder, who developed the Omegaven treatment after watching up to four children die from liver failure each year at his hospital alone.
Without FDA approval, Omegaven is available only to those who can come to Boston to take the drug in a research protocol, or at another hospital with special dispensation from the FDA, a provision called “compassionate use.”
Image: Doctor holding infant, via Shutterstock
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Friday, October 19th, 2012
An 11-year-old California boy has been told he needs to transfer to a different public middle school because he carries the gene for–but does not have–the genetic disease cystic fibrosis. From MSNBC.com:
Colman Chadam, was told last week that he’d have to transfer from Jordan Middle School in Palo Alto, Calif., to a school three miles away because he posed a risk to another student at school who does have the disease, according to TODAY.
“I was sad but at the same time I was mad because I understood that I hadn’t done anything wrong,” Colman told TODAY. He added: “It feels like I’m being bullied in a way that is not right.”
An inherited condition, cystic fibrosis causes the body to create a thick mucus that clogs the lungs and can lead to life-threatening lung infections. About 30,000 American adults and children have the disease and patients have an average life expectancy in the late 30s.
While it is not contagious, doctors say people with cystic fibrosis can pose a danger to each other through bacterial cross-contamination if they are in close contact.
“In general, we would prefer that there not be more than one cystic fibrosis patient in a school,” Dr. Thomas Keens, the head of the cystic fibrosis center at Children’s Hospital Los Angeles, told TODAY.
The district’s assistant superintendent, Charles Young, told NBC News that officials relied on medical authorities who said “a literal physical distance must be maintained” between patients and that the “zero risk option” was to transfer Colman.
Colman’s parents are homeschooling him while they await a decision on the school situation. They emphasized to the media and to school officials that their son has never had a clinical diagnosis of cystic fibrosis.
Image: School bus, via Shutterstock
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