How To Make Disease-Free Designer Babies

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At What Point Does Preventing Disease Turn Into Eugenics?

When it comes to "designer babies," the line is not so clear. 

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If you could live longer, avoid the effects of an inherited disease, or prevent your child from being sick, would you do it?  Of course you would, but what if it meant relying on a third person’s genetic material? This question, under debate since the FDA held a hearing on technologies to prevent mitochondrial disease earlier this year, showcases the fact that sometimes health-promoting technologies require deep ethical consideration. Longevity science, like other types of science, sometimes comes up against gut instincts and traditional views, making it important that society examines the issues closely.

Mitochondria are the energy centers of the cell, and when they don’t work properly, a number of diseases can take hold, potentially resulting in vision loss, seizures and other terrible, potentially life-threatening afflictions. The technique under the FDA’s consideration would remove disease-causing mitochondrial DNA from an otherwise healthy woman’s egg and replace it with mitochondria from a donor.  After that, the egg would be fertilized with the man’s sperm in an IVF procedure. 

The resulting so-called ‘three person embryo’ would be spared untold suffering, but the method raises questions as to whether this type of procedure crosses the proverbial red line. In an attempt to avoid ethical issues, the FDA’s committee asked participants to limit their discussion to safety, but the idea of genetically altering an individual before birth was too controversial to be compartmentalized in that way.

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Headlines like “FDA weighs evidence on producing '3-parent' embryos” and “FDA Holds Hearing on Disease-Free 'Designer Babies'” were lightening rods, making the process of fixing a disease-causing genetic defect sound more like some evil plot at tailoring society, which it is not. Those who disagreed with the procedure were quick to sound alarm bells.

“Genetic modifications of sperm, eggs and early embryos should be strictly off limits. Otherwise, we risk venturing into human experimentation and high-tech eugenics,” wrote Marcy Darnovsky of the Center for Genetics and Society.  Yet, that humans are continually experimenting and fixing disease-causing mutations seems like a no-brainer. As Duke University professor Nita Farahany has argued, people are already making decisions that affect the future prospects of their children: “Who we choose as a potential mate—that's selection bias,” she said.

Even so, there is a real concern over safety. If the genetic tweaks aren’t quite right, it’s possible that problems could surface down the road. That’s true of all new health technologies, but this case may be more important because it is being done before birth (as are procedures like in utero heart surgery) and has the potential to impact subsequent generations.

It turns out, however, that even before the FDA began looking at this issue, a number of parents had already made use of donor genetic material to protect against mitochondrial disease – as early as 1997. The children of these parents are healthy and now in their late teens. In the almost twenty years since those procedures took place, the world does not appear to have fallen apart because of them.  To the contrary – a number of very happy parents have been blessed with healthy, bright, and loving children.

Maureen Ott, one of the first parents to use a third person’s genetic material to ensure her child was not born with a debilitating mitochondrial disease, spoke with the New York Times Magazine. “If I was doing something like, say, I only wanted a blond-haired girl, I would feel that was unethical,” she said. “But what I was trying to do was use whatever medical procedures were available to me to get pregnant, and I didn’t think that was unethical.”

That makes sense to most people, and given that the FDA is looking at the idea after the fact helps to underscore just how fast things are moving in the biotech world. When asked whether health-promoting technologies like genetic engineering come into direct conflict with society’s version of the ‘natural’ human, longevity scientist Aubrey de Grey argued that it’s not a widespread issue.

“I don’t think we really have a broad-based irrational attachment to our 'natural’ state these days,” he said. “We’re totally comfortable with the prevailing and extremely unnatural freedom from most infectious diseases that has arisen from the past 200 years’ progress in understanding how they arise. Same goes for our unnatural ability to get from A to B quite a bit more rapidly than we could by running.”

De Grey is right – medically treating babies to avoid unnecessary disease and suffering should be added to the list of ‘unnatural’ things that human beings are doing to promote health and wellness in the world. Those who fight against this type of progress should notice that their position is the one with questionable ethics.