Words like “designer babies,” “three person embryos” and “Frankenbabies” litter headlines opposing an emerging technology that could save thousands of children’s lives each year. These controversial buzzwords are used to describe a method called mitochondria replacement.
The process is technically difficult, But, it could cure a set of rare and varied diseases that derive from faulty mitochondria. These components are found in every cell of the body. They’re responsible for helping each cell produce and use energy. And they have their own genomes, different than the cell itself. Mothers are the only source of mitochondria DNA. All the mitochondria in a person’s body are derived from the original set in the fertilized egg.
Transferring the fertilized nucleus of an embryo with diseased mitochondria to a donor egg with healthy mitochondria stops transmission of diseases which take a brutal and swift toll on babies born with the conditions.
Ewen Callaway in Nature describes one family’s struggle to understand the disease, losing a total of seven children before they realized that mom Sharon was a carrier of mitochandrial disease:
Bernardi had lost three children within hours of birth, owing to a mysterious build-up of acid in their blood. So it was a huge relief when Edward seemed to develop normally. “He did all his milestones: he sat up, he crawled and started to walk at 14 months,” Bernardi recalls. But when he was about two years old, he began to fall over after taking a few steps; he eventually started having seizures. In 1994, when Edward was four, he was diagnosed with Leigh’s disease, a condition that affects the central nervous system. Doctors told Sharon that her son would be lucky to reach his fifth birthday.
If this technology can offer a chance that families won’t suffer horrible loss, why is there such opposition? Perhaps it has something to do with the terminology thrown around by opponents. Instead of explaining what the technology actually does, writers like Jessica Cussins at Biopolitical Times choose technical and stigmatized terminology like ‘germ line manipulation,’ ‘designer babies’ and ‘three parent embryos’ to confuse and put off readers who are not given a chance to understand the technology or its potential impacts.
Even more troubling, Cussins writes about “The Global Consensus against Human Germline Modifications” which inaccurately describes the results of a single survey of UK residents, paid for by an anti-mitochandrial replacement Christian charity, to further lead readers to believe that the technology is ethically untenable and widely accepted as such. Cussins own reporting of the study refutes the idea there is any sort of consensus:
The poll asked 2,031 people three sets of questions. Overall, 35 percent supported changing the UK law to permit “3-parent embryos,” 34 percent opposed it, and 31 percent said they didn’t know. But out of the women who responded, who made up 52% of the total, only 31 percent supported the change while 36 percent opposed it.
That sounds like the British public is at best undecided about the ethics of mitochondrial replacement and offers zero information about global opinion.
Opponents who are willing to discuss the technology argue that there could be unknown effects.
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This is true of most emerging medical procedures.
Callaway’s reporting noted that some researchers worry about potential incompatibility between the donor mitochondria genes and those in the nucleus. Some studies have found negative effects and some haven’t.
Others argue that if we allow genetic manipulation of humans to cure these diseases, it will be only a matter of time before we are altering egg and sperm to pick out our children’s eye color and intelligence. But our society has managed to adopt many technologies and adapt them to fit the ethical norms of our culture.
Although it’s a messy process, we have guns but outlaw murder. We use the internet but prosecute child pornographers. To think we can’t do the same with genetic technologies, that they’re some how different, is absurd. Right now the FDA won’t let private industry offer interpretations of DNA to consenting adult customers, for example.
Stories like that of the Bernardi’s family inspired neurologist Douglass Turnbull to become an expert on mitochondrial disease. And his work has come to the forefront of a ongoing legal debate in the UK on whether to permit this research. Critics have been vocal, throwing around the usual buzz words. But for Tumbull, none of it makes sense when compared to the good mitochondrial replacement could do:
“This is not a slippery slope, in my view,” Turnbull says. “This isn’t ‘designer babies’. This is about preventing serious, life-threatening, disabling diseases.”
Sources:
- Reproductive medicine: The power of three, Nature
- Will the UK Disrupt the Global Consensus against Human Germline Modifications?, Biopolitical Times
- Majority of UK Women Oppose Legalizing the Creation of “3-Person Embryos”, Biopolitical Times
Additional Resources:
- Deconstructing the polarizing debate over oocyte modification (3-parent babies), Genetic Literacy Project
- Three parent baby debate: FDA ponders mitochondrial manipulation and, perhaps, germline modification too,
- Multiplex babies? New wrinkle on ‘new eugenics’ and the debate over 3-parent IVF babies, Genetic Literacy Project
- British ’3-parent’ IVF babies could come as early as 2015, Genetic Literacy Project
