Worrying about CRISPR

Scientists have developed a new technology, CRISPR-Cas9, for editing genes in day old human embryos. The technology (explained here with terrific graphics) was used to edit out a gene that leads to a severe heart detect, though the embryos were then discarded.

We won't be using this technology to create genetically modified people until there has been a lot more research. There's also going to have to be an ethical and legal debate. Is there something worrisome about editing an embryo's genes?  There might be, but we need to be careful to have the right worries.  It's very easy to have worries that just don't make sense.

Take this Time Magazine op-ed, by Joel Michael Reynolds.  The title says it all:  Gene Editing Might Mean My Brother Would've Never Existed. His brother Jason had muscle-eye-brain disease and had "muscular dystrophy, cerebral palsy, severe nearsightedness, hydrocephalus and intellectual disability." Jason was lovely and beloved, and so Reynolds questions a technology that would prevent Jason from ever existing.

It's no fun criticizing someone who reveals love and grief in the way Reynolds does, but this worry about a specific person not existing is the wrong worry to have.  There are many things we do to control who is born that are either neutral or mandatory, but would alter who exists.

  • Picture the debate that went on before contraceptives were available. An opponent of legalizing contraceptives could look at his unplanned little brother and say that if his parents had had access to contraceptive technology, the boy wouldn't have existed. That fact surely has no weight at all, however much it may be painful to imagine a world without a specific person. 
  • Imagine a woman being told by her dermatologist not to conceive a child while she's taking Accutane, because Accutane causes abnormalities. She ignores this advice and conceives a child with some abnormalities. Should she really feel good about her choice, because without it, her child wouldn't have been born? 

We are simply confused when we object to an action or practice because, if opted for, this lovely and beloved child wouldn't have been born.  At the time that we're choosing the action or practice, there are millions of possible children who could come into existence, and there's nothing that says that the one who actually will be born should be born.

Reynolds is concerned that Jason be born, but also that people like Jason be born.  He gives us this description of Jason's life, to convince us that that he wasn't worse off than other children.
He lived past his first year thanks to marvels of modern medicine. A shunt surgery to drain excess cerebrospinal fluid building up around his brain took six attempts, but the seventh succeeded. Aside from those surgeries’ complications and intermittent illnesses due to a less-than-robust immune system, Jason was healthy. Healthy and happy — very happy. His smile could light up a room. Yet, that didn’t stop people from thinking that his disability made him worse off. 
This reminds me of the old joke: "Aside from that, how was the play, Mrs Lincoln?" I don't see how a string of surgeries, complications, and illness, in someone who evidently died before the age of two, leaves very much to be good.  It's not ableist, but just realistic, to think Jason was worse off than other babies.

Reynolds chocks it up to ableism that many parents would like to avoid having a baby like Jason. But even he seems to admit there are health problems that ought to be avoided.
We, who are often still unable to distinguish between positive, world-creating forms of disability and negative, world-destroying forms — between Deafness, short stature or certain types of neurodiversity and chronic pain, Tay-Sachs or Alzheimer’s. It is with great responsibility that we as a society balance along the tightrope of biomedical progress. 
I don't know about putting muscle-eye-brain disease in the "positive, world-creating" list, as if babies could creatively construct their own distinctive way of life and identity, in the manner that some people with deafness and short stature say that they do.  The heart problem that was eliminated by the CRISPR research also doesn't seem to belong on the "positive, world-creating" list.

So what's the right worry to have? I do think gene editing could lead to far too much choosiness in prospective parents--too much constructing of the preferred child and too little receptiveness. It could be over-used. I don't think there's a good, coherent reason to think it should never be used.


Wayne yuen said...

What is in the worry of it's over use?

Jean Kazez said...

Seems like it's an important thing in a prospective parent that they're receptive to the child who happens to be born, instead of building a child of their dreams and working to get the child up to speed, as the child grows up. So if someone went really nuts with gene editing, it might be evidence of an undesirable, non-parent-like state of mind. So...a little choosiness might be warranted, depending on what your genes are like, but you don't want it to drown out receptiveness, unconditional love, etc. That's the idea.

Wayne Yuen said...

That sounds like Sandel's argument in The Case against Perfection, that we just have to accept our children for what they are. But I'm not sure that receptiveness or acceptance of our children really entails that we shouldn't use GE, or that we should use it less.

So the obvious counter argument is, you could be receptive/accepting of disabilities. The argument usually then starts moving towards what counts as enhancement and treatment, since some health issues are a form of treatment, not enhancement. Of course this line is really fuzzy. Savulescu, I think has the stronger argument that there really isn't much difference between treatment and enhancement, so basically all GE gets put back on the table.

I'm really torn on this issue. I'm not sure I want designer babies, full hog, but I really can't find a principled way, that isn't arbitrary, that helps solidify a pretty hazy line.

I can be a receptive and accepting parent, of a GE child (I would have to, since all sorts of things affect phenotypes besides genotypes), but still engineer the heck out of my child.

I think where people go wrong more than anything, is overestimating the power of GE and not taking into account all the other factors that affect phenotypes. But if people had a healthy understanding of what GE can and can't do, and the wide variations that still exist even with GE, they couldn't help but be accepting, and hedging their bets at the same time.

So let's say I want a girl, and I know there are all sorts of techniques that I can use to hedge my bet that my child is conceived as a girl. So I do them, and I get a boy instead. I'm still accepting, but a little disappointed in that all of my efforts were for naught. Was it wrong for me to engage in all of the techniques to help conceive a girl?

Jean Kazez said...

I remember Sandel a tad differently. He thinks we generally ought to welcome talents and assets as gifts--whether in ourselves or in others. So it's not really a matter of the parental state of mind requiring this. That's the attitude we ought to bring to everything/everyone. Plus, the issue really is at the "enhancement" end for him--it's assets that we shouldn't try to implant in kids. I don't recall him having much to say about trying to prevent diseases and disabilities in "The Case Against Perfection." Possibly he thinks that's OK.