Wednesday 17 October 2018

The great frozen embryo debate

It’s been 40 years since the first successful IVF birth. Now an estimated one million embryos are on ice in the U.S., but who gets to decide whether these “maybe babies” are human life, a clump of cells, or something in between?

t took less than five minutes to place the embryo in my uterus. Wearing a paper gown and cap, I was led by a nurse to a surgical suite, where I placed my legs in stirrups. I assumed the position, and a second nurse confirmed my identity while someone else inserted a catheter through my cervix. Then a doctor—and this is the term he used—"squirted" a roughly 0.1 millimeter ­bundle of cells into me. After six months of infertility treatment, I was prepared to have some emotional reaction, but it felt more like I was being prepared for a covert science experiment than a much-hoped-for pregnancy.

Then came the photo. As I was wheeled out of the operating room, someone handed me a heavily magnified shot of the embryo printed on glossy paper. I let out the kind of unruly laugh that has no place in a hospital. The seriousness of the moment had been punctured by the arrival of what felt like a souvenir, the kind shilled by amusement parks after a ride on their tallest roller coaster. Visually, it wasn’t much to see: a gray, scaly moon blown up to the size of an Oreo. Still, it was my Oreo moon. I put the picture in the corner of my bedroom mirror and gazed at it while my husband gave me the nightly progesterone shot to help my “maybe baby” survive the precious days after in vitro fertilization. A few weeks later, after I miscarried, I tucked the photo in a drawer where I knew it would get lost but not destroyed.

Four months passed, and it was time to do it all over again. Hair in cap, legs in stirrups, squirt. Afterward I tossed the photo of embryo number two in with the post-op paperwork, uninterested in contemplating its potential. Today I have all the evidence I need in the form of a sturdy one-year-old boy named Levi. But Levi’s very first photo? Yeah, I don’t know where that went.

These are some ambivalent feelings, I know. But the five- day-old embryos often used in IVF can do this to a person. They’re tiny, smaller than a grain of sand, and they give rise to some big emotions and bigger questions. What, really, was I holding a picture of? A person? A speck on a page? A chemistry experiment that could be destined to fail? Forty years after IVF became an option, we’re only beginning to figure that out. “Medically, we know what an embryo is. But what kind of moral and legal status does it have? There isn’t much agreement about that,” says Lisa Campo-Engelstein, Ph.D., an associate professor of bioethics at Albany Medical College in New York, who writes about reproductive ethics. “Are they persons, property, or something in between?”

Even with all the controversy, more and more are using frozen embryos to help build their families: IVF rates continue to rise and cases of donation went from 621 cycles in 2004 to 1,179 cycles in 2014.

And what if your own answer to that question changes? Or your partner disagrees? Ruth Whippman, a 44-year-old author based in northern California, conceived her second son, Zeph, through IVF. At first she rarely thought about the four extra embryos she and her husband kept in the freezer following his birth. But then, about a year later, Whippman found herself sentimentalizing her frozen embryos, or “frosties,” as they’re sometimes referred to on infertility discussion boards.

There are currently an estimated one million frosties in the United States, a source of both hope and stress for potential parents around the country. Research shows that figuring out what to do with unused embryos is a difficult and contentious process: A University of California, San Francisco, study found that one third of people keep their embryos on ice because they are unable to decide what to do with them. Sometimes this is the result of ambivalence; other times it’s because of a disagreement between a couple. “It crept up on me that their genetic material had already been set—whether they had curly hair, were male or female,” Whippman says of her own embryos. “It felt like, These are my kids, and they are in the freezer. As if they didn’t have their coat on and were cold.”

Her husband, Neil, a software product manager, felt little connection to what he calls his “AmEx points,” a reference to the monthly $45 storage fees they paid with their credit card. (Even if clients stop paying those fees, few facilities will dispose of them out of fear of getting sued down the line.)
While Whippman always thought about having three kids, it was the existence of the extra embryos that turned this hazy longing into an undeniable need. She and Neil decided to give their embryos a shot. Two were deemed viable to try, and the second one stuck. Now they are parents to three sons, two of whom were fertilized at the same time—fraternal twins born four years apart. Whippman describes herself as “100 percent pro-choice” and sees no conflict between her feelings about her embryos and a woman’s right to abort them. “These are my emotions for me to deal with about my embryos. That is what choice means,” she says. “The embryos meant totally different things to me and to my husband. To him, they were as close to nothing as you can possibly get. To me, they were as close to everything as you can possibly get.”

Whippman is describing what Campo-Engelstein calls a relational model for embryos, which means their moral status can be defined only by the person or people who created them (or received them through a donation). In this thinking, the embryo doesn’t intrinsically have a moral status. It’s not a little person. It’s also not not a little person. “Embryos are valuable because people value them, not because of their innate worth,” Campo-Engelstein says.

While a “you do you” approach may work in our personal lives, it can be tricky legally. Take, for example, the recent accidental destruction of thousands of frozen eggs and embryos at fertility clinics in San Francisco and Cleveland. There are currently more than 60 pending lawsuits seeking compensation. “How do we explain that loss in legal terms? Some people see them as frozen children; other people see them as bunches of cells,” Campo-Engelstein says. “There’s such a huge spectrum of views that it can be hard to even begin the conversation.” (Of course, this question—When does life begin?—is one people have grappled with for centuries.)

What to do with leftover embryos complicates decisions about whether or not to use frozen embryos at all as well as how to pick among them. For instance, the Internet raged when Chrissy Teigen announced that she and husband John Legend had chosen to transfer a female embryo in 2015 (now their daughter, Luna). Critics were uncomfortable with the couple selecting an embryo based on sex; some saw it as evidence that IVF was paving the way for “designer” babies. (It is not currently possible to single out an embryo for traits like high intelligence, eye color, or a calm demeanor.)

Like a rising number of IVF patients, Teigen and Legend had their embryos tested for chromosomal abnormalities before transferring them. During this process, the sex is revealed, and some patients choose to learn that information. As Teigen saw it, the idea that she should not interfere with fate was ridiculous. By doing IVF, necessary because of the couple’s struggle with infertility, she had already intervened with nature’s plan. On Twitter, she asked, “What is that difference though? I’ve already created embryos with a doctor. Only after must it be random?” Two years later Teigen and Legend used their remaining embryo to become pregnant with their son, Miles.

The Internet raged when Chrissy Teigen announced she and John Legend had chosen to transfer a female embryo in 2015. Critics were uncomfortable with the couple selecting an embryo based on sex; some saw it as evidence that IVF was paving the way for “designer” babies.

The backlash Teigen experienced may be due in part to the mixed messages Americans receive about embryos. Right now, if you have embryos to freeze, you have control over what happens to them next, and there are no laws governing how long you can keep them on ice. On the other hand, the Dickey-Wicker Amendment, signed into law by President Clinton in 1996, bans federal funding for research involving human embryos. The bill’s authors, then representatives Jay Dickey (R–Ark.) and Roger Wicker ­(R–Miss.), opposed such research because of their belief that an embryo is, in fact, a life.

This ban has handicapped infertility research, says ­Barbara Collura, president and CEO of Resolve: The National Infertility Association, a nonprofit advocacy organization. With few exceptions, doctors and scientists working on embryo-related projects are not eligible to apply for the nearly $30 billion worth of grant money from the National Institutes of Health and must rely on funding from other sources. “The fact is, we know more about a mouse embryo than a human embryo,” Collura says. “The embryo is the holy grail, and researchers have their hands tied.”

But even with all the controversy, more and more are using frozen embryos to help build their families: IVF rates continue to rise, and cases of donation went from 621 cycles in 2004 to 1,179 cycles in 2014, according to the Society for Assisted Reproductive Technology. These donations can take place through fertility clinics, embryo banks, or personal connections forged in person or online. As with all embryo-related matters, the experience varies dramatically.

Consider Tina and Benjamin Gibson of Knoxville, Tennessee. Because of Benjamin’s cystic fibrosis, the couple wasn’t able to have biological children and had long been considering creating a ­family through adoption. Then one night Tina’s dad heard about embryo donation on the news and rushed to tell them about it. After some research and deliberation, Tina, a 27-year-old schoolteacher, and Benjamin, a 34-year-old information technologist, decided to give it a shot.

They reached out to a nonprofit in Knoxville, the National Embryo Donation Center. After a few medical tests, the Gibsons were able to choose embryos from the NEDC’s large database of donor profiles. When they went in for their embryo transfer in March 2017, they learned that the donated embryo they were about to use was 24 years old. About a year later, they became the proud parents of the ­longest-known frozen embryo to result in a successful birth. “While we have never had our own biological kids, I can’t imagine feeling any different,” Tina says of Emma. “The connection comes when you make your decision to commit your life to another human.”




The Gibsons were happy to talk about their experience, which was covered in national outlets like CNN and The Atlantic. “When we first thought of embryo adoption, it seemed very strange and unfamiliar. We did a lot of praying and soul-searching about it,” Tina says. Eventually they came to the conclusion that embryo donation is consistent with their anti­abortion outlook. “We really believe this was saving a life. For us, an embryo is a life.”

Many religious Christians share the Gibsons’ belief that life begins at conception, whether it happens in or outside of the womb. IVF patients with these views often try to use or donate all their extra embryos. Another less common option is to have what is known as a compassionate transfer, in which doctors place an embryo in a woman’s womb during a point in her cycle when it’s unlikely to survive.

Others see an embryo more as a rough blueprint for a baby than a baby itself. After Ona Brazwell had received treatment for a rare ovarian cancer, it didn’t look as though the then nearly 40-year-old engineer from Maine would be able to get pregnant. When artificial insemination and IVF with her own egg and donated sperm failed, she found embryo donations.

Brazwell opted for an open donation, as opposed to an anonymous one. That way her potential future children could “know their roots,” she says. She hit dead end after dead end and was in “a dark place” when she saw a post on a surrogacy discussion board: “Seeking Christian Couple for Anonymous Donation.” Brazwell wasn’t Christian, in a relationship, or in pursuit of an anonymous donation. She wrote the couple anyway, and eventually they agreed to an open donation. Today she has twins born from the embryos, a son and a daughter. The children see their embryo donors, whom they call “auntie” and “uncle,” at least once a year.

Since giving birth to her children, Brazwell has been looking into epigenetics, or how certain genes can switch on and off. This happens during pregnancy, when a mother’s mental health, nutrition, and hormones can affect a child’s long-term development. “There’s all sorts of research out there showing that stuff is happening in the womb,” she says. Over the years Brazwell has observed shared physical similarities with her kids—“My daughter looks just like me as a child,” she says—the fact they gestated inside of her makes them, in ways scientists are only beginning to comprehend, also physically hers.

Unlike Brazwell’s or the Gibsons’ donors, I wasn’t willing to recycle my extra embryos. After the miscarriage and Levi, we still had two left over. We don’t want more children, but I also can’t imagine them being born to someone else. Would he have my smile? Would she have my husband’s animated brow? I’d always be looking. (My husband feels otherwise.)

It’s been a year since we sent in the paperwork informing our clinic that we would like our embryos to be used for research in the lab. By now there’s a good chance that our frosties have helped to train an incoming embryologist, or to test a new freezing technique. When friends and family raise eyebrows at this decision, I explain that it costs $1,200 a year to keep an embryo on ice at our clinic, an amount that would better serve our sons’ college funds. But it isn’t just about money. The decision was also borne of a desire to free myself of those nagging what-ifs—What if we implanted those embryos? What if they turned into children? What if I am a terrible person because I don’t want to give them a chance?—and focus on the what is.

There are still days when those questions torment me. But most of the time, when I think about those embryos, I think about what they already brought me: my second child, a child who wasn’t going to come into the world the old-­fashioned way. Levi is where my embryos story ends. And it’s my story to tell.

(Source: Glamour)

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