The options for Alternate Family Planning are always increasing, and now we are seeing a push to get rid of inherited genetic conditions that are maternally passed through mitochondrial donation.
Mitochondrial diseases are often terminal conditions that most often affect the heart, kidney, skeletal muscle, and brain of the child but can have other effects on the body as well. In Australia, approximately 1 child dies every week of a mitochondrial disease. Mitochondrial diseases are passed solely through genetic material of the mother, and the conditions are constantly mutating, with over 700 mutations since the first mitochondrial disease was discovered. Most children with the disease are not expected to live for longer than a few years, due to the nature of their conditions at such a young age. Even for children that make it through the critically dangerous period of life, they can be affected by myopathies, neurodegenerative diseases, diabetes, cancer, and infertility as they go onwards, and the symptoms of their mitochondrial disease can still present themselves severely.
These critically dangerous conditions have created a need for research into how they can be avoided in genetic lines going forward. Recently, mitochondrial donation was developed, allowing a child to have healthy mtDNA implanted in the embryo stage so that they are not born with a mitochondrial disease.
How Does It Work?
The Mitochondrial donation process is similar to IVF in many respects. The parents prepare an embryo in the same method as they would for standard IVF and implantation. However, in this case a third party also prepares for the transfer. The 3rd party with healthy mitochondrial DNA. This technique ensures that only health mitochondria are bred into the child.
This new technique has yielded several children without mitochondrial disorders, sparking excitement from parents that are affected by these conditions in their family planning. Unfortunately, testing found that this procedure cannot be used to repair an existing mitochondrial disease.
How Legal Is It?
Currently, mitochondrial donation techniques are legal in the United Kingdom. Australia has likewise opened its doors to testing of the procedures in the coming years. In the US, mitochondrial donation is effectively banned due to a congressional amendment that passed in 2015 that has been renewed every year since. However, through the campaigning of certain senators and legislators, the FDA has designated that mitochondrial donation warrants more testing and evaluation before the practice is allowed.
Legally, there is a more complicated issue for the child, as it technically has three genetic parents. This invites an opening for court cases over custody that we have not seen before, where three people have biological relation to the child as a parent. In addition, many countries have determined that no alteration be made to an egg or sperm before an embryo is created to avoid cases of eugenics or “designer babies”.
The National Academies of Science, Engineering, and Medicine however have determined that this kind of genetic modification would be ethically permissible to prevent a child from being born with a potentially fatal or chronically detrimental disease. This opens the door for future testing being implemented to try to help children be born free of these diseases.
What are the Concerns?
Genetic modification has been a subject of interest for many as it has been sensationalized by science fiction media. The idea of tailoring ideal children through genetic modification even down to hair and eye color has permeated the media, meaning that that is what people think of when they consider mitochondrial donation.
There are reasons to be concerned about this procedure that go beyond sensationalism. No one thinks that children should be born with devastating genetic disorders such as mitochondrial disease, but it is hard to ignore some of the criticisms coming from experts when it comes to future generational genetics, long-term consequences for the child mentally and legally, and ethical issues of consent.
This practice is relatively new, and we are not aware of the long-term consequences to altering a child’s genes through mitochondrial donation. None of the children helped by this process are old enough to have adult conditions present themselves or have reproduced themselves. There is a substantial danger that we are creating new genetic anomalies through this process.
There are also valid criticisms of the process itself for being extremely expensive, making it so that only financially privileged people have the opportunity to prevent their children from being born with mitochondrial disease.
Finally, despite the expense and the danger, the procedure does not yet guarantee that the child will be born free from mitochondrial disease. This was originally the case with many forms of alternate family planning, and they became more refined as time went on.
Once, IVF and IUI were new processes where the outcomes were unknown and the impacts were potentially high. All treatments and procedures go through a period where they are cleared for practice but not 100% effective yet. Mitochondrial donation may yet be a very good way to protect children from mitochondrial disease and eventually get rid of these devastating conditions completely, but we can’t know until children born from this procedure start passing down their genes.
Keep an eye on these studies in the coming years to see how they develop, and make an informed decision on whether you see success in the process.
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