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Naming What We're Doing: A Case Study

There is a fascinating story in today’s Washington Post about an FDA panel debating the question of whether to allow genetic modification of human embryos to “insert” genes of a third person, when there are genetic defects in the original DNA. Quite apart from how this displays our ongoing hostility toward disability, it has produced the most fascinating set of headline developments I have ever seen. On the paper copy of the Post in my library, the headline reads: “FDA debates idea of three-parent babies.” On the Web, the headline is “FDA panel debates technique that that would create embryos with three genetic parents.” Gone are the three-parent babies. Instead, bring in the “techniques” and the “embryos”! But the headline on the Web front page is even further from the print: “FDA debates procedure that mixes DNA from three people to form embryo.” Hmmm. Is “procedure” a bit more medical and less manufacturing in its resonance than is “technique”? Does “mixing DNA to form embryo” work better than “parenting”?

Herbert McCabe wrote in his magnificent Law, Love, and Language that what ethics is really all about is not simply law or love; rather, it is about developing a language whereby we could see more and more deeply and richly into the genuine significance of human living. The headline variance here provides quite a test case!

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The linked WaPo article contains quotes by Marcy Darnovsky of the Center for Genetics and Socirty about the dangers of the mitochondrial manipulation technology being considered by the FDA. Ms. Darnovsky had her own oped in the NYT a couple of days ago ("Genetically Modified Babies") in which she counseled against an "eggs-as-Lego-pieces approach" to building human beings.

http://www.nytimes.com/2014/02/24/opinion/genetically-modified-babies.html

      

David, I'm not sure I see the hostility to people with disabilities--just to the disabilities.  I also see the story as sensationalized.  IMitochondrial DNA furnishes a tiny percentage of the DNA. Mitochondrial DNA codes for approximately 37 out of  at least 20,000 genes, and approximately 16,000 base pairs out of 3 billion base pairs. 

I think the underlying ethical story actually points to a troubling type of genetic essentialism.  Why is a "mother" someone who contributes any type of genetic material--most of our genetic material, after all is common. Why is it wrong to fix a mitochondrial problem, but not to transplant a kidney?

I have a genetic disability - Stargardt's disease - and I don't see how trying to eliminate such things is hostile to the disabled.  Interesting, btw, that the Vatican  *is* for the genetic modification of some organisms ... http://www.nature.com/nbt/journal/v29/n1/full/nbt0111-11.html

It seems to me that replacing someone's liver with another (dead) person's liver is one thing.  There are only two people involved, but replacing genes is another. .The ethical problem, I think, is that we don't know enough at this time about possible unintended consequences of those changed genes.  Yes, there are relativley few genes involved, but we do know with great certainty now that even just one changed gene  -- as in random mutations -- can have terrible consequences.

Mitochondria are the descendents of bacteria that achieved symbiosis with larger more complex cells over a billion years ago.  These cells eventually evolved into multicellular life.  They have their own DNA.  We received it along with our mothers' eggs.  These mitochondria affect energy processing and therefore the health of the whole organism but not, as far as I know, any specific characteristics of the developed organism.  I don't think of this as anything like designer babies.  The question is, why not just not have kids and adopt?  Is this technology really necessary?  What does it do for the common good?  Aren't there other avenues of research that are more important, say, new antibiotics?  

Stanley,

Yes, the need for new antibiotics seems urgent.  (I wonder if the general populacre knows how bad the situation is.)  But isn't that a relatively old field of research, and aren't they stumped about where to turn next?  The field of genetic medicine, on the other hand, is wide open -- and that's the opposite problem.  

Who makes the decisions about priorities in basic research?  NIH?  AMA? Nobody?

Stanley Kopacz said, "...why not just not have kids and adopt?  Is this technology really necessary? What does it do for the common good?"  All of these are good questions which need to be discussed before we plunge headlong into genetic changes which may affect future generations in ways that were not anticipated.                                                                                                                                      

Re:  Ann Olivier's comment on antibiotic research, phage therapy may be a possible source of new treatments:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMc90351/

Sorry, bad link in previous comment.  Try this one:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC90351/

Although the government does subsidized the making of new antibiotics (http://www.nytimes.com/2010/11/06/health/policy/06germ.html?_r=0), the money is in genetic engineering, not in making pharmeceticals.  Michael Crichton wrote about this years ago in his book, Jurassic Park ...

"[T]he original genetic engineering companies, like Genentech and Cetus, were all started to make pharmaceuticals. New drugs for mankind. Noble, noble purpose. Unfortunately, drugs face all kinds of barriers. FDA testing alone takes five to eight years - if you're lucky. Even worse, there are forces at work in the marketplace. Suppose you make a miracle drug for cancer or heart disease - as Genentech did. Suppose you now want to charge a thousand dollars or two thousand dollars a dose. You might imagine that is your privilege. After all, you invented the drug, you paid to develop and test it; you should be able to charge whatever you wish. But do you really think that the government will let you do that? No, Henry, they will not. Sick people aren't going to pay a thousand dollars a dose for needed medication - they won't be grateful, they'll be outraged. Blue Cross isn't going to pay it. They'll scream highway robbery. So something will happen. Your patent application will be denied. Your permits will be delayed. Something will force you to see reason - and to sell your drug at a lower cost. From a business standpoint, that makes helping mankind a very risky business."

There may be serious questions in this mattar - unintended consequences included.  But the "third parent" notion is simply silly.   My genetic signature, and also that of all of you reading this (provided only that you are of Eurasian descent, at leat in part), contains a few percent of Neandertal genetic information.  A small contribution from yet another source in  a genome that hs evolved over some millions of years?  Please.    

Mark L.

Consider the extreme case, one that might seem science fiction but, to me, doesn't sound like an impossibility.  What if nanomanipulation allowed the stringing together of base pairs from scratch, the total manufacture of chromosomes which could then be inserted into an egg evacuated of original  genetic material?  This would produce a human being with no biological history.  For this reason,  I think the debate of even relatively ethically mild cases such as mitochondrial transplant is good as preparation.  Of course, sometimes ethical debate in a market-driven civilization seems futile.  Only the Amish seem to make communal decisions about introducing technology and adhere to them.

Almost on a daily basis my nieces and nephews play computer games in which they "create" new "persons". It's the computer equivalent of playing with dolls, where with a few clicks they can pick from a large assortment of clothes, hairstyles, skin colors, eye shapes, lips, ears, etc. They call it "creating" a "person". They say proudly: "Look, I created this person!", or "Today I created 5 persons, 2 girls and 3 boys"

When they're adult, maybe the kind of extreme scenario suggested by Stanley won't seem so extreme, thanks to the language they got used to while playing computer games.

 

Long before we humans had the technology to modify an organism directly at the level of genes, we were changing plants and other animals by selective breeding to enhance attributes we liked: faster horses, more colorful and aromatic flowers, tastier vegetables, greater milk or meat production from cattle, etc. Not many people were troubled by moral considerations, because the objects of experimentation were not human. But often the changed creatures were less hardy than the wild types. Thoroughbred horses may run faster than mustangs but, left to themselves, they will struggle to compete and survive. Like hothouse plants, they now require our care in order to thrive.

Very often a single gene will not have a one-to-one effect on the phenotype. Genes work together to produce many results, and it's unlikely that we have a complete catalog yet of the possibilities. So there is plenty of room for caution and doubt to go along with elation at the possibility of making something better. And that is before we even get to the eugenicky part.

However, the point of the post was not the morality of gene manipulation, but the significance of word choice in headlines. Frankly, I don't see much that is new here. Editors, constrained by space limitations, give a brief summary of the story, hoping to emphasize what is new and entice readers to read on. These three headlines all agree that there is a debate, even if they describe it in somewhat different terms.

Katherine --

 

Thanks so very much for the highly informative article about phage therapy.  It does give some hope.  But why doesn't the American Congress support more research?  Public  ignorance? Do people not know that diseases evolve too?  I guess most Americans are too young to remember life before penicillin (which *often* doesn't work these days). 

 

What I understand least is why the press hasn't sensationalized what should, for once, be sensationalized.  You'e think the National Enquirer would love headlines like "Staph skin infection scars Kim Kardashian's face" or "World-wide plague possible by end of year".

 

No doubt the reason I find this so scary is that New Orleans history has taught us well that diseases can decimate our own population.  And the plot of the movie "Panic in the Streets" reminded us of real possibilities -- in it a Public Health Officer has one day to get to the source of a case of pneumonic plague.  Today, a mutated Black Death is not unthinkable.  

 

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About the Author

David Cloutier is associate professor of theology at Mount St. Mary’s University and editor of catholicmoraltheology.com. He is the author of Love, Reason, and God's Story: An Introduction to Catholic Sexual Ethics (2008) and is working on a book on the moral problem of luxury in contemporary economic ethics.