Parents banking on storage of umbilical cord blood: Founder keeps research alive through Genesis Bank

Blood from the umbilical cord of a baby expected to be born in Indianapolis later this month will be collected after her birth and saved for her 5-year-old sister, who has been diagnosed with cancer.

The stem cells extracted from the baby’s umbilical cord blood might someday save the life of her sibling.

While doctors at Riley Hospital for Children wait and see if the young cancer patient responds to standard treatment over the next couple of years, the stem cells will be frozen and stored at The Genesis Bank, an Indianapolis-based company thought to be the first in the state founded to store cord blood.

Stem cells from cord blood are used today to treat leukemia and other cancers, various blood disorders and immune deficiency diseases.

Researchers consider stem cells the building blocks of a person’s blood and immune systems. Many believe that someday they’ll be able to develop stem cells into other organs, muscles and nerves and use them to rebuild cardiac tissue, repair damage caused by stroke or spinal cord injuries, and reverse the effects of diseases such as Parkinson’s and multiple sclerosis.

Before the 1980s, stem cells were extracted from bone marrow and embryos.
About that time, researchers at Indiana University discovered that cord blood was a rich source of stem cells. IU researchers aided doctors in France in the first cord blood transplant in 1989.

With controversy over embryonic stem cell research not expected to lessen anytime soon, Genesis President and CEO Erik Woods expects the use of cord blood stem cells to increase.

“This is the ultimate alternative to embryonic stem cells,” Woods said. “A newborn is as close as you can get to a fetus. [Umbilical cord blood] is going to be thrown away otherwise.”

Woods, 33, whose background is in biology, biomedical engineering and cryopreservation-the freezing and thawing of cells so they retain their function-has been researching how to add shelf life to stem cells for about 10 years.

Frustrated that as a researcher he could not apply for certain federal grants he wanted, Woods incorporated Genesis in 1997 so he could continue his research.

Since then, Genesis has received nearly $3 million in grants from the National Institute of Health and others.

Today, Genesis, a private cord blood bank, stores samples for about 400 clients who pay $950 to have their newborn’s blood collected, tested and frozen. Afterward, they pay about $100 a year to have it stored for possible future use by the child
or, more likely, a sibling.

There are about 25 private blood banks nationally, up from an estimated 15 three years ago.

“We think of it as an alternative form of insurance,” said Jonathan Titus, a dental student at IUPUI whose wife, Mollie, gave birth to their son June 15.

After the birth, the couple watched a doctor puncture the umbilical cord and drain blood into a collection bag and two vials. Blood from the vials will be tested soon to ensure the stored blood will be viable for transplantation down the road.
“We’ll get to see the cultures in a couple of weeks,” Titus said. “For science nerds like me, that’s interesting.”

While Genesis’ revenue comes from collecting and freezing cord blood-the company is bringing in about $30,000 a month in revenue-Woods hopes his clients won’t have to use it.

“Fortunately, we haven’t had to do any transplants directly with our clients,” he said. The odds that a baby without risk factors will ever use her own banked cord blood is considered low. In fact, there are few cases

involving transplanted self-donated cells.

But if and when the stem cells are thawed from their minus-160 degrees centigrade liquid nitrogen vapor tanks, it’ll be because someone needs treatment for what might otherwise be an incurable disease or condition.

Such is the case with the 5-year-old child with cancer and her sibling soon to be born at Riley.

“A cord blood transplant in the future might be indicated, so we’re going to save the blood just in case,” said Dr. Scott Goebel, who is part of the pediatric stem
cell transplantation program at the children’s hospital. He is also one of three medical directors at Genesis.

That baby’s stem cells will be stored without charge by Genesis because the family cannot afford their services.

If the transplant takes place, it could be the first for Genesis, although about 100 such transplantations have been performed at Riley, said Goebel, who has done about 40 himself in the past six years.

If the blood is never needed, parents can donate the blood to Genesis, which would help create a public cord blood bank that could be tapped by doctors for patients unrelated to the original donor. One of Genesis’ goals is to have a public bank.

Those who start out storing blood could
later donate it or people could also choose to donate at the time of their child’s birth.

And while stem cells extracted from bone marrow must be a perfect match for a transplant recipient, cord blood cells don’t.

“Cord blood cells seem to be more forgiving, more naïve,” Goebel said. “That’s a prime selling point. This is essentially a free source of cells that are otherwise thrown away and they don’t have to be a perfect match as with bone marrow.”

Some doctors and organizations, such as the American Academy of Pediatrics, have cautioned that cord blood banks may be capitalizing on the fears of new parents with misleading marketing. They say the odds are long that children will ever need their own stored blood. Parents should
consider those odds before paying the steep fees associated with storage, critics say. They may be better off simply donating the cord blood to a public bank. Despite the concerns, Titus and his wife say they will likely continue storing their child’s blood beyond the time he’s grown. “Research and future technology seems limitless,” Titus said. Woods and Goebel agree. “There is research going on now at IU and around the world of how to do more with less,” Goebel said. Researchers are looking into growing cells in labs so there would be enough to use in adults, he said. “There are already more and more uses for these cells,” Woods said.