Rewriting the future: How DNA-enforced IVF May End Mitochondrial Disease
- Mary Bicknell
- Dec 26, 2025
- 4 min read
When asked what my favorite rabbit hole to go down when it comes to medicine, it was no surprise. It is related to a family disease process, mitochondrial disease.
At 19, M, my grandson, is a functioning high school graduate with many quirks and twists. Today, one sees a tall, very thin, quiet, long red-haired man with a beard that is patchy in places but covers much of his face. As you walk past him you notice he is very quiet, even if he is talking to someone. His eyes are usually downcast, and he avoids looking at others. He walks with his arms straight at his sides, swinging only minimally. However, if you listen closely, you will hear a boy who likes to make subtle, ever-present jokes, talks obsessively about a single topic, there are several, but most of them are subjects the general public only has a passing interest in. If you listen, you will know that he is smart, and clever, and wants to interact with a limited group of people. If you ask M who he is, one of the first things he will tell you is that he is a poet, which he is, though not published yet.
So why, you might ask, did this push me down the rabbit hole of mitochondrial disease and what is that, for goodness’s sake. If you liked high school anatomy and biology, you may remember the mitochondria being called the powerhouse of the cell. Mitochondria produce ATP which is the major energy used by the cell. We don’t need to go any further in high school science but to remember that all the cells in the body rely on this ‘organelle’ to produce energy. What happens if there is a genetic mutation to the mitochondria of a baby when they are born? By 10 years of age, or earlier, that child will be affected by what we call mitochondrial disease, or, to a lesser degree, mitochondrial defect.
To know how common this defect is, we need to look at the data. How many babies have been born with any specific unusual or unknown genetic mutation in the United States? The CDC pointed out that the US does not have a national system that tracks birth defects. It is noted that most states do have a system to keep track and those numbers are extrapolated to estimate the number of defects in the US. So, the truth is that we don’t know the exact number of infants born with any defect, but when the estimated numbers are examined, we can get a reasonable idea of the likelihood of any baby being born with that specific defect. The best knowledge is that Mitochondrial genetic defects happen in 1 in 4,300 births.
So, if a child is born with a genetic altering of mitochondria, all cells can be affected, which would mean all organs can be affected, and therefore, all systems of the body can be affected. There are varying degrees of effect for each individual.
You might ask, what is the real-life effect for the child and the family? Since every cell of the body has mitochondria, the symptoms can affect all body systems. Children’s Hospital of Philadelphia states the symptoms can include 14 different problems, including things like
Problems with growth and muscles
Neurologic issues, including seizures or Autism
Learning delays, hearing and sight problems
Problems with the gastric or circulatory or endocrine system
And the problems do not stop there. Since every cell is affected, every cell can be impacted, and you cannot predict which symptom is going to show up for any one patient.
The rabbit hole of this scenario started because I read recent research published in Brittan, reporting on a study addressing the possibility of decreasing the chance of Mitochondrial gene defects. The research explored editing a very small portion of an egg’s DNA prior to fertilization, to disavow the genetic formula coming from the mother being translated to the infant. Basically, what that means is, even if the mother has the gene to pass on mitochondrial disease, the baby would not get that gene. The method used is called DNA-enforced IVF. At the point of this writing, there are 8 babies, 19 months old, who are all passing their normal milestones, and showing no signs of the disease. It appears these 8 babies will not endure the trials of mitochondrial mutation.
Being a nurse for several decades, I have cared for infants and toddlers who have been affected by mitochondrial disease. I have worked with a family who lost a boy and a girl, both before they were 4 years old. So, you might say that my grandson is luckier than some, my daughter is luckier than some, and that is true. However, M spent many months each year in the hospital, he has had more than 30 surgeries and dozens of hospital admissions. He has numerous diagnoses; many centered on the digestive system. He also is mildly autistic, and the disease has affected his respiratory and neurologic system. My daughter never had a job until M was well into his teens. She was usually at the hospital with him during his many stays or was dealing with some aspect of his disease process. And, for my granddaughter, who has been determined to have the same gene make up, and will likely pass it on to her children, what does she do now? As a young woman of childbearing age, it is very hard to consider having a child that would live through the many difficulties she watched her brother live through. This new research could provide her with an answer to a life altering decision.
Is this new process a step toward reshaping our world and allowing more individuals to experience what it is like to be human without these limitations that cause barriers to everyday life? With the new research and the promising results, parents may have the potential of having a healthy infant, instead of one whose life is uncertain in many ways.
Newcastle University Press Office. 2025. “Mitochondrial Donation Treatment.” Newcastle University, July 2025. Accessed August 12, 2025. http://www.ncl.ac.uk/press/articles/latest/2025/07/mitochondrialdonationtreatment/.
National Human Genome Research Institute. (2025, November 3). Mitochondria. https://www.genome.gov/genetics-glossary/Mitochondria
Centers for Disease Control and Prevention. (2024, November 19). Data and statistics on birth defects. https://www.cdc.gov/birth-defects/data-research/facts-stats/index.html
Lanese, N. (2025, July 16). 8 babies spared from potentially deadly inherited diseases through new IVF ‘mitochondrial donation’ trial. Live Science.
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