HILLSBORO, Ore. — Gabrielle Mileti says it’s tough being a mother of a child with mitochondrial DNA disorder. The condition literally saps her son of his energy.
New research on monkeys doesn’t hold out promise for her son, Joey. Instead, it raises new ethical issues by attempting to prevent the disorder in new babies — by giving them two mothers.
“Daily tasks such as feeding, walking and even playing are an extreme challenge,” with Joey, age 5, Mileti said.
Mitochondria are often called a “cell’s powerhouse.” They produce 90% of the energy a body uses. Joey’s energy-making mitochondria are suffering from the equivalent of an energy “brown-out.”
“Socially, interacting with ‘normal’ children and their families becomes more and more difficult,” said Mileti. “Joey cannot do the things that developing kindergarten-age children can.”
Children with severe mitochondrial defects hit developmental stages late — or never at all. Joey was first diagnosed with the disease at age 2.
The Miletis are parishioners at St. John and Paul in Larchmont, N.Y. The parish recently raised funds for research into his disease. Currently, there is no cure, and Mileti isn’t likely to back any ethically questionable approach.
“We have dedicated our lives to three things since the diagnosis,” said Mileti. “God and the Catholic Church, finding a cure for mitochondrial disease and giving Joey the best life he can possibly have.”
A new technology tested on monkeys at the Oregon National Primate Research Center in Hillsboro, near Portland, addresses the problem at its root, but raises ethical issues.
Think of it as Brave New World meets The Matrix.
In the Aldous Huxley novel, children are produced in “hatcheries.” In the movie version, machines power themselves by using the energy generated by people’s bodies.
In Oregon, scientists bred monkeys in a lab after replacing the “batteries” in their originating egg cells.
“We’ve been able to replace the mitochondrial DNA in the egg, and it’s pretty efficient in terms of the procedure itself,” said Shoukhrat Mitalipov, who did the research. The monkey embryos created from those eggs “have come to term, and we had healthy infants.”
He added, however, that his experiment didn’t use monkeys with mitochondrial problems. “We used just healthy monkeys, just with two different types of mitochondrial DNA.”
How big of a breakthrough is this research?
Said Father Tad Pacholczyk (pronounced puh-HOLE-chick) of the National Catholic Bioethics Center in Philadelphia, “It’s a kind of next step in a long train of developments involving nuclear transfer.” Nuclear transfer is the central process involved in cloning.
The difference between cloning and the new “DNA swap” technology is that scientists didn’t make a new monkey — they made a new monkey egg.
That difference affects the ethics of the situation.
“Normally, when you do cloning,” said Father Pacholczyk, “you are making an organism. They didn’t do that here. They didn’t make the organism until they did in vitro fertilization and put the sperm and egg together. This is a variation on the theme.”
Essentially, the process, if it were used on humans, would use two biological mothers to create one egg. One mother’s problematic mitochondria would be replaced with the healthy mother’s. That egg would then become a new person with two mothers.
The new technology comes at a time when mitochondrial disease is increasingly in the news, although its still uncertain what promise it holds.
Cliff Gorski, director of communications at the United Mitochondrial Disease Foundation in Pittsburgh, said the research is interesting but not necessarily a help to those who have the disease already.
“Our organization deals with people who are currently affected by mitochondrial disease,” he said. “As I understand it, this research probably wouldn’t affect anybody that we currently deal with.”
Boston Red Sox outfielder Rocco Baldelli was thought to suffer from a mitochondrial disorder until he was rediagnosed last year with a treatable disease.
Recent studies have linked mitochondrial disorders to a number of genetic conditions that often present themselves later in life, such as Lou Gehrig’s disease, Parkinson’s and Alzheimer’s. The cachet that comes with “big name” diseases is attracting more attention — and more funding — to mitochondrial disease foundations and interests.
U.S. Rep. Jim McDermott, D-Wash., is sponsoring a bill — H.R. 3502 — that would establish a national office for mitochondrial disorders at the National Institutes of Health.
The Register asked if the office would fund research on humans like the “DNA swap.”
“Dig it out and read it,” his press secretary, Mike Decesare, said. “We’re doing a bunch of other things right now.”
By our reading, it seems that the McDermott-proposed office would fund this kind of research. Mitalipov said that his project was mostly funded by the National Institutes of Health even without the special office.
It might surprise constituents to know that the National Institutes of Health’s Office of Child Health and Human Development was funding cloning experiments on monkeys.
Mitalipov, who did the research, sees the new technology as an ethical breakthrough for humans.
He said the way in vitro fertilization would normally be used to solve a problem like mitochondrial disorders is that a lab “creates multiple embryos and then the doctor chooses which don’t carry the disease at all and then uses those. The rest would be thrown away — killed.”
With the new “DNA swapping” procedure, “We will correct one embryo. There will be no extras created,” said Mitalipov. “No embryo destruction. Ethically, our approach is solving many ethical questions.”
Not so fast, says Father Pacholczyk, who earned a Ph.D. in neuroscience from Yale University, then did postdoctoral research at Massachusetts General Hospital/Harvard Medical School before studying theology in Rome.
There are two aspects of the situation to be considered: the technology itself and the end product.
First is the problem of the process itself.
Father Pacholczyk said, “The technology would promote the use of in vitro fertilization, the making of test-tube babies, and that technology is in and of itself invariably immoral. It’s a technology that involves fundamental violations against the good of human sexuality and human life, as well.”
But then he addressed the product of the process. “What you’re doing here is a kind of an egg construction project,” he said. “The egg that’s used to create a human being actually comes from two women. So you in a sense are creating children who have two mothers, and, in a sense, diluting parenthood here by doing this because you aren’t using simply one woman’s egg.”
Why is that a problem? Because “all of us are entitled to come into the world with a direct and linear relationship to a mother and a father,” said Father Pacholczyk.
“Knowing one’s origins is hugely important to all of us. As kids we all start to wonder, ‘Where did I come from? How did I get here?’ If there’s uncertainty about this, it can be devastating for a child.”
Adopted children and orphans don’t have the same sorts of questions as test-tube babies, he said.
“Adopted children know they came from a father and a mother,” said the priest. “They may not have had the opportunity to meet them due to circumstances beyond their control. But they weren’t circumstances chosen against the child in some way.”
For children of anonymous sperm or egg donors, that’s not the case. “This is the kind of thing that weighs on them for years and decades,” he said. “In the case of the anonymous sperm donor, you have a decision made by the donor and the agency involved to make sure this information is not made available.”
Father Pacholczyk raised one other ethical issue in the “DNA swapping” procedure.
“By doing all of this, you are modifying not just the genetic traits of the one individual that you created by in vitro,” he said. “You are also modifying the traits of all his or her descendents. We call this a change in the germ line.”
Mitalipov argued that the research he did suggests that you could correct for one defect and “do no harm” in the germ line.
Said Father Pacholczyk, “Any time you undertake a change of this sort, you have to understand the magnitude of the changes. You need to be very certain that this is something of zero risk or very low risk” of passing on abnormalities for generations.
Tom Hoopes writes
from Atchison, Kansas,
where he is writer in residence
at Benedictine College.