What CRISPR and gene editing means for women's reproductive health
You may have seen or heard the nebulous acronym “CRISPR” being tossed around in the media. CRISPR, which stands for “Clustered Regularly Interspaced Short Palindromic Repeats,” is perhaps the single most momentous breakthrough in biomedicine in years—maybe even decades. We can be thankful to its founders not only for coming up with a considerably shorter version of its name, but also for developing what is being heralded as the key to long-awaited cures for a number of intractable diseases. CRISPR is being explored as a solution to HIV, Zika virus, antibiotic-resistant bacteria, a slew of cancer varieties, and much more. If CRISPR continues to fulfill scientists’ expectations, odds are you will receive some sort of therapy that harnesses CRISPR at some point in your life. That being said, what in the world is this CRISPR thing that promises to so profoundly impact human health?
Understanding the details of how CRISPR technology works is less important than understanding what it is broadly capable of—although you can read and watch an excellent layman’s explanation of the process here. The essential point to grasp is that CRISPR makes it possible to change what is encoded in living organisms’ DNA.
Written so simply, this might not sound as impressive as it actually is. To better understand the significance of CRISPR, we can rely on the oft-heard analogy of DNA being a blueprint and a living organism being the house that is made from the blueprint. To extend this metaphor, CRISPR is a technology that allows you to rewrite parts of the blueprint after the house is already built—and then the house spontaneously alters itself to match the edited blueprint. Pretty powerful stuff, to say the least.
It’s no wonder CRISPR has so rapidly risen to popularity in science, medicine and the media alike. In the four years since its development, dozens of therapeutic, diagnostic and biotech startups have coalesced around the technology. Its inventors are already favored for a Nobel Prize, and earlier this month the first human trial for CRISPR-based cancer therapeutics was just cleared to proceed by the NIH.
With all of these fast-moving developments and the rosy publicity that surrounds them, it’s hard not to get caught up in the hype that CRISPR is going to save the world. But, as with any powerful technology, there is a darker side to how it can be used. One part of that dark side is germ-line genetic engineering.
Germ-line genetic engineering entails changing the DNA of cells that are associated with reproduction—that is, the sperm, the egg and/or the embryo. The use of CRISPR to change the DNA of these cells would allow scientists to cure heritable diseases before they can even manifest, erasing the problematic part of the blueprint before it gets built into the body. On the one hand, this would be a monumental boon for families with a genetic history of debilitating diseases like cystic fibrosis, hemophilia or Huntington’s disease. Germ-line editing with CRISPR would make it possible to ensure that children do not carry the diseased genes of their parents or relatives, thus stopping the inheritance of a disorder in its tracks.
On the other hand, germ-line editing is the doorway to the world of designer babies, one of the most ethically controversial ideas in our collective imagination. Depictions of this future world of designer babies typically entail parents picking and choosing their offspring’s qualities down to the most superficial minutiae. There are fears that this would lead to a horrific monocultural crop of human beings, a super race of blonde-haired, blue-eyed, type-A personality geniuses. It’s also feared that the design-a-baby technology would be reserved for the rich and privileged, leading socioeconomic classes of genetically superior and inferior humans (think Gattaca-style social relations).
With the advent of CRISPR these imaginations finally have a realistic pathway to reality, and are certainly something we should be thinking about as they inch closer to becoming part of our material world.
But these imaginations are not what I’d like to talk about here.
Instead what I’d like to talk about is what the use of CRISPR for germ-line editing would mean for women. Because, owing to differences in our reproductive machinery, what CRISPR means for women is not the same as what it means for men.
The reason why comes down to ease of access to germ-line cells. If you want to extract a woman’s eggs for germ-line editing, her body requires a long regimen of pharmaceutical treatment leading up to invasive surgery. To extract a man’s sperm requires, well, shall we say a much more technologically minimalist approach.
In other words, while a man’s germ cells can be obtained in 10 minutes with a cup in the bathroom, a woman must undergo an in vitro fertilization procedure, or IVF.
IVF is another acronym that has rocketed into mainstream consciousness in recent decades. IVF is the leading medical solution for female (and sometimes male) infertility. IVF entails giving a woman drugs that cause her body to produce a larger-than-normal amounts of eggs. Then those eggs are surgically extracted and fertilized with sperm outside of the body. Finally, one or more of the embryos is implanted back into the woman’s uterus, hopefully resulting in a pregnancy. It’s a procedure increasingly being used by women who find themselves otherwise unable to get pregnant. As of 2013, the number of total births resulting from IVF globally was estimated at 5 million.
While this can certainly be seen as a good thing insofar as it has allowed women to overcome their infertility and achieve motherhood, IVF is no walk in the park. In fact, it is extremely hard on women’s bodies. Doctors are finally beginning to acknowledge that the IVF procedure is associated with risks of severe and sometimes life-threatening side effects, such as ovarian hyperstimulation syndrome, dramatic and irreversible bone density loss, dementia, pituitary apoplexy and cancer. Some women have died from side effects associated with IVF drugs or complications associated with the egg removal surgery.
Furthermore, with a success rate varying from 13-43% (depending on age), multiple attempts at the procedure are usually required. Women have been known to undergo as many as 12 unsuccessful cycles of IVF at extreme risk to their own health.
Oh, and the average price tag on a single cycle of IVF in the U.S.? $20,000.
And that’s without CRISPR technology added to the mix. There’s no way to speculate what additional cost CRISPR blueprint-editing services would add on top of the already hefty price of just getting access to the original blueprint.
What is certain, however, is that any woman who wants to take advantage of the power of CRISPR will have to undergo IVF to extract her germ cells.
Up until now, IVF has rightfully only been targeted toward women who experience fertility problems. With the availability of CRISPR, suddenly the target audience expands to any woman who wants an additional, genetic level of control over the health and wellbeing of her child.
And what future mother doesn’t want that? What woman wants to play genetic roulette with her future child when she has the option of greatly improving the chances that her baby turns out healthy?
On its face, this sounds like a great option to have. The worrying thing about this is the pressure that it puts on women to make choices that may be harmful to them—emotionally, physically, and financially.
Studies have shown that women are willing to engage in risky behavior in the pursuit of cultural ideals of motherhood, shouldering extreme risks upon themselves in order to produce a child and mother that child flawlessly. One explanation for this lies in the sociocultural pressures and expectations associated with being a perfect mother. The cultural message that women must sacrifice what is good and right for them in order to do what is good and right for their children has been linked to rising levels of guilt, anxiety and depression in mothers. On top of all of this emotional turmoil, the physical suffering and financial strain that women experience when they are compelled to make these sacrifices—such as pursuing multiple cycles of IVF—can be absolutely devastating.
If CRISPR is legalized for germ-line editing, every woman will be faced with an impossible choice: improving her future child’s genetics at the expense of her own wellbeing, or preserving her own health but leaving her child’s genetics up to chance.
Just imagine being a woman planning to have a baby and being faced with this decision. What kind of diseases and risk factors in your family history do you need to worry about? Are you in good enough health to undergo the procedure? Can you even afford the procedure? Should you get a second mortgage on the house to pay for it? What if you forgo the procedure and your child has genetic imperfections? Will he or she be less happy? Will he or she be less healthy? And if not, who do you have to blame but yourself?
I’m not saying that women don’t have a right to explore these questions, exercise their agency and make informed choices. But we can’t ignore the kind of economic and cultural environment in which women are forced to make these choices, especially when the playing field isn’t even for women and men. This is part of the justification for illegalizing such acts as prostitution, polygamy and others—and I believe it should be part of the argument for illegalizing (or at least strongly regulating) germ-line editing in the United States.
Being a mother is already hard. CRISPR germ-line editing is going make it that much harder.
Right now at least four laboratories around the world—one in the U.S., one in the U.K. and two in China—are experimenting with human germ-line editing. Furthermore, last year a form of non-CRISPR germ-line editing was legalized in Great Britain when mitochondrial transfers were declared permissible. Slowly but surely, germ-line editing is creeping into reality right under our noses. If it is allowed to continue, within a matter of years all women of reproductive age will be faced with these choices.
And that’s a frightening future I’m not sure I want to live in.
Christine is a passionate social science scholar who works at a sustainable biotech venture capital fund. She spends most of her spare time tending to her dogs, cats, chickens, and vegetable garden.