FDA, Mitochondrial Manipulation, Three Parent Children, and the NY Times

In yesterday’s NY Times Op-Ed page Marcy Darnovsky writes about FDA’s consideration of mitochondrial manipulation therapies later this week. As she describes it:

The F.D.A. calls them mitochondrial manipulation technologies. The procedures involve removing the nuclear material either from the egg or embryo of a woman with inheritable mitochondrial disease and inserting it into a healthy egg or embryo of a donor whose own nuclear material has been discarded. Any offspring would carry genetic material from three people — the nuclear DNA of the mother and father, and the mitochondrial DNA of the donor. 

As she writes in her opinion:

Some media accounts about these techniques have misleadingly referred to “saving lives,” as if they were aimed at people who are sick and suffering. Others have failed to note how very few women would be candidates for even considering them. And they could turn to safer and simpler alternatives. An affected woman could adopt or use in vitro fertilization with another woman’s eggs. Of course, the resulting child would not be genetically related to her, but neither would the child be put at grave risk by an extreme procedure.

The F.D.A. advisory panel says that its meeting will consider only scientific aspects of mitochondrial manipulation and that any “ethical and social policy issues” are outside its scope. But those are precisely the issues that we must address. Simply being able to do something doesn’t mean we should do it.

That conclusion is a bit pat, though I don’t fault her too much given how tight op-ed word limits are, and maybe a tad reactionary. I do think she raises an interesting point about how this is not saving lives, though I think so for different reasons.

As I have argued in depth elsewhere, when we adopt or forbid a technology or regulation that will alter which children are conceived (genetically speaking) we cannot be said to harm or benefit the children that would have been born had we not used that technology. This is what I have called as the flaw of Best Interests of the Resulting Child reasoning.

Now that may not actually be true for mitochondrial replacement to the extent there is “original” material left over, making it more like a different case I have written about – genetically altering a child to have a disability – for which concepts of harm and benefit might be more appropriate.  This raises the “Ship of Theseus” problem of when a thing that is replaced in part remains the original.  As Plutarch put it (thanks wikipedia!)

The ship wherein Theseus and the youth of Athens returned from Crete had thirty oars, and was preserved by the Athenians down even to the time of Demetrius Phalereus, for they took away the old planks as they decayed, putting in new and stronger timber in their place, in so much that this ship became a standing example among the philosophers, for the logical question of things that grow; one side holding that the ship remained the same, and the other contending that it was not the same.

If every board but one is replaced, is it still the same ship? My own intuitive sense is that there is enough replaced in mitochondrial replacement that the problem with best interests reasoning (or to speak like a philosopher the “Non-Identity Problem”) would attach in this case but that is not a foregone conclusion as it is with other technologies/regulations that completely alter the genomes of who is born.

While Darnovsky seems alarmed at the challenges of this technology to social and ethical thinking, to me they are exciting and worth engaging. I think the most interesting possibility is the way this technology might de-center the notion of genetic parenthood as being the relevant concept of parenthood. Or to put it slightly differently, this would problematize the notion of who genetic parents are, since there are now *three* genetic parents. This relates to work I have done elsewhere on why genetic parenthood matters, in my papers The Right Not to Be a Genetic Parent? and The Constitution and the Rights Not to Procreate. Would surrogacy and sperm donor parentage case law and statutes that give primacy to genetic parents including all three genetic parents in this brave new world?

I. Glenn Cohen

I. Glenn Cohen is the James A. Attwood and Leslie Williams Professor of Law at Harvard Law School and current Faculty Director of the Petrie-Flom Center. A member of the inaugural cohort of Petrie-Flom Academic Fellows, Glenn was appointed to the Harvard Law School faculty in 2008. Glenn is one of the world's leading experts on the intersection of bioethics (sometimes also called "medical ethics") and the law, as well as health law. He also teaches civil procedure. From Seoul to Krakow to Vancouver, Glenn has spoken at legal, medical, and industry conferences around the world and his work has appeared in or been covered on PBS, NPR, ABC, CNN, MSNBC, Mother Jones, the New York Times, the New Republic, the Boston Globe, and several other media venues. He was the youngest professor on the faculty at Harvard Law School (tenured or untenured) both when he joined the faculty in 2008 (at age 29) and when he was tenured as a full professor in 2013 (at age 34).

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