The year of the embryo: Part 1

Can we finally address America’s questions about IVF?

Photo courtesy of Elizabeth Carr.

In the final days of 1981, with armed guards outside the door, Elizabeth Carr took her first breath. Her birth was a sensation. When her family returned home from the hospital, they were trailed by television crews. 

The story of how she came to be is one she is very used to telling. “I said to one reporter, welcome to the issue I’ve been speaking about since I could string a sentence together,” Elizabeth recounted when we caught up last week.

She was the first American to come from a human egg that was fertilized outside her mother’s body.  To many, her existence represented hope. But to some, her conception was immoral. The anticipation of it prompted activists to take out an ad in the New York Times calling in vitro fertilization “abhorrent technology.”

Here’s the thing: in nature, embryos do not always implant, gestate, and get born. Due to some genetic or environmental misfortune, one in four human pregnancies are “spontaneously aborted,” resulting in miscarriage. 

IVF similarly requires creating embryos, and also discarding embryos, either because they are not healthy or because they are not needed. The difference is that the human hand in this process holds moral weight. 

A few years before Elizabeth was born, the Carter administration commissioned an Ethics Advisory Board to sift through the unique ethical and legal considerations of IVF. Composed of physicians, legal experts, theologians and philosophers, the board said IVF was an acceptable technology to benefit infertile couples but in their view it needed to be used judiciously. They recommended that measures be taken to “minimize” the creation of unimplanted embryos. They did not fully specify what those measures should be. 

Everything old is new again

Elizabeth began her life as an anomaly. Now she is one of 8 million people born via IVF, a number that is certain to grow. The World Health Organization estimates that 1 in 6 reproductive-age adults may benefit from fertility assistance. That’s hundreds of millions of people. 

But despite its popularity and need, earlier this year IVF became a lightning rod. 

First, the Alabama supreme court issued a ruling that suddenly conferred personhood to embryos, halting all procedures in the state. Just as quickly, the Alabama legislature took measures to reinstate them. Then, President Biden spoke in support of IVF during his State of the Union speech (Elizabeth was in the room as a special guest). 

Just last week, both sides of the aisle proposed laws protecting IVF, and then voted those laws down. Southern Baptists, the nation’s largest Protestant denomination, convened 10,000 delegates to vote against the use of it. Simultaneously, lawmakers proposed a separate bill that would promote “restorative reproductive technology,” a movement that aims to help couples grow their families without IVF. 

It’s easy to point to the 2022 Dobbs decision as the catalyst for the recent attention to IVF and the subsequent discord. But the need to create and then discard embryos has long been legally perilous. Louisiana, for example, had a long-standing prohibition on embryo destruction that predated Dobbs by many years. 

I asked my friend Glenn Cohen, a professor at Harvard Law School and a leading expert on the intersection of bioethics and the law, to help me make sense of this. 

“We saw unsuccessful personhood ballot initiatives in states like Mississippi in 2011,” Glenn told me over email. What’s different is the politics of Dobbs, not the law. “Now that Roe has been overturned, the abortion-restriction movement is focusing on new goals.” 

Unfinished business

The questions at the center of these debates are the same that the ethics board brought before the Carter administration and American public at the very start. Under what conditions is it ethical for unimplanted embryos to be discarded? Where is the line between discarding unhealthy embryos and eugenics? 

The ethics board acknowledged that they didn’t have all the answers. They decided that the only way to ensure IVF was both safe and ethical would be to regulate it on an ongoing basis. But how much regulation, and by which agencies? Well, they never got to that. 

A year later, the Ethics Advisory Board’s charter expired. Two years later, they were disbanded altogether. For over a decade, federal policy required review and approval of all assisted reproductive technology research by a board that did not exist. By the time President Clinton took office and moved to lift the federal ban on embryonic research, it was reinstated by Congress as a rider on the following year’s appropriations bill. (That rider, called the Dickey-Wicker Amendment, has been added to every appropriations bill since.)

What is “ethical” IVF?

Ahead of the latest racket of legislation, the Heritage Foundation released a “Christian’s Practical Guide to Reproductive Technology,” which encourages the creation of one embryo at a time, without the use of injectable fertility medication. Their aim seems to be not that IVF should be outlawed, but that no embryos should be wasted.  The significant downside to this approach of course is that it limits the effectiveness of each IVF cycle, costing the intended parents both money and precious time.

Clinically, this practice is sometimes referred to as “mini IVF.” Dr. John Zhang, IVF Lab Director at the Institute for Human Reproduction, trained his staff on mini IVF several years ago, believing it might be an appealing option for religious families seeking fertility care. So far, he says, not a single person has opted for this approach. While there’s evidence this method might work for some people, perhaps unsurprisingly, most people didn’t want treatments that even have a chance of being less effective.

The same could be said of the movement for “restorative reproductive medicine,” advocated by a recent bill—on paper this care aims to prioritize patients with conditions such as endometriosis, adenomyosis, and PCOS, while steering them away from IVF. In reality, this approach creates a false choice. Good medicine must address pre-existing conditions before turning to ART. But one shouldn’t—and needn't—replace the other. 

Advocates like Elizabeth are concerned these kinds of calls for policy will increasingly become the norm: more than banning IVF altogether, which isn’t popular, advocates will seek to regulate its medical implementation in a way that severely diminishes access and effectiveness, either by limiting the number of embryos people can collect or implant or both. IVF, as we know, is a numbers game. Making those numbers smaller only reduces your odds of success.

A way forward

Today, Elizabeth is a professional advocate who leads marketing at Genomic Prediction, a lab that tests embryo health in order to help couples better select those that are most likely to result in a live birth. From her vantage point, science should be deployed to create life, and it’s not clear that more federal involvement is the answer.

She says that, paradoxically, what makes today’s anti-IVF arguments new is that the average person is more familiar with IVF than ever before. “We've done a really good job educating people around what IVF is, but there are still people who don't fully understand it. Of the people who have enough knowledge to be dangerous, they are sowing the idea that this industry isn’t safe,” she told me. 

In this way, Elizabeth expects activists across the spectrum will increasingly coalesce around calls for regulation, something we’ve already seen in headline after headline. The problem, Elizabeth says, is that it’s not clear what we actually mean by regulation. It’s one thing to think critically about lab procedures that ensure safe embryo collection and storage. But it’s quite another to wonder if embryos should be collected or stored altogether. Without this clarity, advocates on both sides may rush past many of the practical steps to protecting IVF that most of us actually agree on.

And, this part is crucial: we agree on a lot. Just as the debates haven’t changed, neither has public opinion. The overwhelming majority of Americans still support broad access to IVF, just as they did when Elizabeth was born. They also agree on many steps to make it safer: like ensuring that IVF is the final destination to fertility care, not the first. Or mandating that all embryology labs subscribe to common sense rules. 

At present, there appears to be a window to clarify questions that have remained murky for forty years—at least to the American public. Amidst fear-mongering headlines, what actually happens in an embryology lab? When it comes to ethical practice, what kinds of basic rules should great fertility clinics be following? And what does great even look like?

More on that next time!

What my team is reading, thinking, and building against:

• I’m grateful to live in a world where technology made the life of a terrific person like Elizabeth Carr possible—and also that she’s devoted that life to ensuring all people can access such technology. You can read more about Elizabeth’s incredible journey here, or you can find her memoir here.

• As is true of most things, the laws and the science answer different questions about IVF. For a more thorough legal breakdown on the landscape after Alabama, Glenn has an excellent piece in JAMA about the exactitudes of “fetal personhood” as a concept.

• We’ll return to this subject next time, but make no mistake: fertility clinics really are subject to plenty of medical oversight, it just isn’t uniform. For a thorough (and nuanced) understanding of the many current rules at play, this Vox explainer breaks it down enough that you could probably have a confident dinner party conversation afterwards. 

• In a slight gear shift, I’d be remiss if I didn’t mention this excellent deep-dive reporting out of GQ on performance enhancing drugs, and what they mean for the future of how men access health care. The entire thing is worth a read, but in particular this line struck a chord: “The gap between our society’s embrace of once-taboo ideas and its faith in institutional medicine is widening—and personally, I laugh anytime I catch a drug commercial telling me to consult my doctor, because who the hell has a doctor anymore?”