The Next Frontier of the Stem Cell Debate

"Snowflake" babies, embryo "adoption," and being pre-born again

In November, Lauren, a pretty 36-year-old physician's assistant with a passing resemblance to Frances McDormand, traveled from her home in New York's Hudson Valley to a Knoxville, Tennessee, fertility clinic to claim three embryos left over from another couple's in vitro fertilization cycle.

Lauren and her husband can't conceive on their own. Three years earlier, they had adopted a little girl, and now, in a final bid to experience pregnancy, Lauren headed to the clinic, where the frozen embryos were thawed and transferred to her uterus.

Doctors call the procedure "embryo donation."

Jeffrey Marini
The next minority group: Frozen bundles of cells in “concentration cans”?
Newscom
The next minority group: Frozen bundles of cells in “concentration cans”?
Ron Stoddart remembers thinking, “Embryos—well, those are already 
pre-born children.”
Courtesy Ron Stoddart
Ron Stoddart remembers thinking, “Embryos—well, those are already pre-born children.”

Today, six months pregnant with triplets, Lauren is uncomfortable: Her back is killing her, and she has heartburn.

She reclines in a red, plastic chair at the local indoor play center in Fishkill, while her daughter, Maliha, romps on an inflatable castle nearby. Exhausted, she rubs her stomach up high, where the heartburn is the worst, and eats an energy bar. An Army veteran and a former marathoner, she's a little in awe of what has happened to her body.

But her discomfort goes beyond aches and pains. She also chafes at the idea that some people think of her as a participant in the ongoing culture wars involving abortion and stem cell research.

Since 1997, a small but growing arm of the pro-life movement has been promoting a new name for what Lauren went through to get herself pregnant: They call it "embryo adoption."

The idea is to convince people that embryos created for in vitro fertilization—undifferentiated clumps of cells roughly the size of a comma—are actually individuals that deserve legal rights and the same protections afforded to actual children during adoption. To help popularize the notion of embryos as unique individuals, pro-life advocates refer to them as human "snowflakes" (because no two are alike), and say that women like Lauren are helping to bring "snowflake babies" into the world.

But Lauren and her husband want to distance themselves from the political debate—they just want to have more children.

"I don't feel like there are unborn children out there that I need to save," she says. But she admits that she hasn't mustered up the nerve to tell her priest where her babies came from. And on the subject of embryonic stem cell research—which is very much a part of the "embryo adoption" debate—she is equally conflicted.

As expected, President Obama's election resulted in the lifting of severe restrictions on embryonic stem cell research put in place by his predecessor. Before Obama's election, however, pro-life advocates had already begun to think of other ways to block researchers who want access to embryos left over from in vitro fertilization—which is why they hope you'll be hearing more in coming years about embryos as people.

Embryo donation, or adoption—whichever you prefer to call it—is still little known to the public. But as the push for embryonic stem cell research intensifies, so will efforts by pro-life advocates to gain legal rights for embryos. Some advocates have already begun calling for nationwide "mandatory implantation provisions," which would require patients with excess frozen embryos to either implant them or relinquish them to adoptive parents, as is already the case in Louisiana, where a frozen embryo is a legal person and it's illegal to discard one.

"This is a civil rights movement," says Sam Casey, executive vice president and general counsel for Advocates International, a conservative Christian legal society. "The parallels are there. We could not admit the humanity of the slave; we had to think of them as biologically inferior sub-species." Likewise, calling frozen embryos "tissues" serves the purposes of the oppressors, says Casey. Right now, they're "a minority group without a vote."

Reproductive rights activists and supporters of embryonic stem cell research are watching with growing alarm. "I think it is dangerous," says Sean Tipton, spokesman for the American Society for Reproductive Medicine. "It's the language of embryo adoption that helps people start equating in their minds an embryo with a child. And if you establish that legally, it becomes very important."

By important, of course, he means bad—bad for in vitro fertilization, bad for the future of embryonic stem cell research, and bad for reproductive liberty.

As the conflict grows, however, most parents who turn to embryo adoption are doing so for reasons that have nothing to do with a political debate. "About 15 percent of our clients genuinely believe embryos are pre-born children," says Megan Corcoran, director of the Snowflakes Frozen Embryo Adoption program, the country's first such agency, based in Fullerton, California. "Most are really here not to save an embryo, but to get pregnant. They'll say, 'Yes, I believe that these embryos are life,' but they're the same people five months into it that say, 'Can we make sure that the embryos are from a woman under 32, that she's healthy, that the embryologist was from a highly rated clinic?' "

Lauren's decision to go with embryos was anything but ideological. "If I could have a child on my own, that would have been my first choice," she says. "I don't feel like I need to be a crusader in this."


On an afternoon in 1997, Ron Stoddart, father of the embryo adoption movement, was driving in Orange County, California, when he heard a radio show discussing the impending destruction of 3,000 surplus frozen embryos in Great Britain. The genetic parents had either given their permission for them to be discarded or were no longer reachable. The story troubled Stoddart. He remembers thinking, "Embryos—well, those are already pre-born children."

At the time, the 66-year-old adoptive father of four was working as a pro-life advocate and adoption attorney, and was executive director of a small adoption charity in Southern California, which today is called the Nightlight Christian Adoption Agency. He'd been watching the in vitro fertilization industry and was concerned about the growing number of surplus embryos in cryopreservation. Experts estimate that there are currently about 400,000 frozen embryos in cold storage.

Not long after Stoddart heard the radio show, a couple came to his office seeking help with an international adoption. Marlene and John Strege had been going through in vitro fertilization treatments, but all had failed. Out of curiosity, Stoddart asked them if they'd heard about the British embryos. They had. In fact, they had recently asked their fertility doctor if they might be able to acquire someone else's unwanted embryos through donation. Though relatively few couples ever chose it, the option had been quietly available for nearly 20 years.

Stoddart thought the idea was brilliant. Why not do it?

Because, the couple told him, the clinic had refused to release information about the donors. And they didn't want to use a donated embryo without someday being able to tell their child about his or her genetic parents; if they were going to do it, they wanted an open embryo "adoption."

So Stoddart started calling fertility clinics: Did they know of any donors who would be interested in an open exchange with the Streges? Time and again, the answer came back: No. "We really have very few people who would be interested in this," they told him.

But Stoddart didn't believe them. He suspected some couples would be eager to donate their embryos if they had more control over who would be getting them.

When Stoddart founded the Snowflakes Frozen Embryo Adoption Program, it became the country's first agency to broker embryo donations and apply adoption terminology and contracts to the transfer. The program offers a range of services traditionally reserved for the adoption of actual children, including background checks, visits to the prospective family's house by social workers, and adoption counseling.

On New Year's Eve 1998—in the same year that researchers at the University of Wisconsin would create the first human embryonic stem cell line—Hannah Strege, the world's first "snowflake baby," was born in Fallbrook, California. Experts estimate that 3,000 children have since been born through similar programs nationwide.


In July 2001, JoAnn Eiman, then-director of the Snowflakes program, traveled to Washington, D.C., to testify in Congress against embryonic stem cell research. Joining her were snowflake parents John and Lucinda Borden. In a moment later recounted in The New York Times, John Borden hefted his nine-month-old twin sons onto his shoulders and asked the panel of stunned Representatives: "Which one of my children would you take? Which one would you kill?"

But no one seemed to notice the more telling exchange between Eiman and Congresswoman Carolyn Maloney, a feminist and Democrat from New York. Maloney asked Eiman if she was in favor of actually forcing people to place their excess embryos up for adoption. At the time, a stunned Eiman said no. But later, in California, after the Congressional office sent her a transcript of her testimony and asked her to make appropriate corrections, Eiman changed her mind.

"We force people to put their kids into foster care if they're not good parents," she says. "If parents aren't parenting their children, aren't we responsible for making sure they do? Do we leave them frozen forever?"

One month after Eiman's testimony, in a prime-time TV address, President Bush restricted federal funding for embryonic stem cell research to those stem cell lines harvested from embryos that had already been destroyed. In anticipation of his impending decision, Stoddart had mailed an information packet about embryo adoption to the President, urging him to prevent the killing of pre-born children.

He assumes some of the materials reached the White House because, during his speech, the President used some of the organization's rhetoric: "Like a snowflake," he said, "each of these embryos is unique, with the unique genetic potential of an individual human being."

Eiman was watching that night. "He put us on the map," she says. The following year, Bush cleared the way for a $1 million Department of Health and Human Services (HHS) grant for embryo adoption and donation awareness campaigns. Nearly $11 million in federal funding has been spent in the promotion of awareness since 2002.

In May 2008, the country's first conference on embryo donation and adoption, funded by an HHS grant, was held in Arlington, Virginia, across the Potomac River from Washington, D.C. In the peach-and-plush conference room of the Marriot Crystal Gateway Hotel, embryo adoption heavyweights like Ron Stoddart and Sam Casey mingled with adoptive parents and donors. A smattering of medical professionals and property attorneys were there, too. Panel discussions like "Bringing Embryo Donation and Adoption to the Mainstream" presented tips for promoting embryo adoption to the public.

E. Christian Brugger, a Harvard- and Oxford-educated theologian and ethicist, who led a panel entitled "Thorny Ethical Issues," recalled later that "everyone present agreed that something needed to be done" about the frozen embryos stranded in "concentration cans," an expression first coined by Dr. Jérôme Lejeune, the renowned French geneticist and Roman Catholic who discovered the cause of Down syndrome.

Anita Catlin, perinatal ethicist, author, and professor of nursing at Sonoma State University, was also at the conference, where she found herself among a scant few skeptics. "There was no debate," she recalls. "The thought there was, 'These are children living in little straws,' " a reference to the tube in which cryogenically frozen embryos are kept.

Catlin, who views the embryo as a "substance worthy of respect," found the religious tenor of the federally funded conference and its emphasis on the personhood of the embryo disturbing. "These people were saying to use embryos for research would be a 'holocaust.' "

Thomas C. Atwood, then-president of the National Council for Adoption, called for the use of the neutral term "embryo placement" as an alternative to adoption. Those who insisted on calling the practice "adoption," he warned, "may lose some potential allies who might support the practice if its name was less loaded."

He also voiced concern about the fates of "born children" awaiting adoption. "Is it appropriate to encourage prospective adoptive parents to receive embryo placements when there are countless millions of born children of all ages around the world in need of adoption?" he asked. "Does embryo placement compete for prospective parents with the adoption of children in foster care?"

Snowflakes' founder, Ron Stoddart, was listening to Atwood from the wings: "The topic of his talk was supposed to be lessons learned from adoption that could be applied to embryo donation or adoption, and he spent half of his talk trying to come up with a set of terms that would be acceptable to everyone. I thought it was a waste of time."


The first time that Lauren's fertility specialist suggested embryo adoption, she wasn't interested. Her doctors had only recently confirmed her worst fears. "They'd managed to fertilize 12 eggs, but they all died in the lab dish," she recalls. "They weren't sure why." Emotionally wrought from the news and from her recent round of fertility meds, Lauren and her husband, who is a reserve Army officer, walked away from assisted reproduction, they thought, for good.

They contacted Bethany Christian Services and began filling out paperwork for a domestic adoption. Almost right away, a birth mother picked them. One day in May 2006, they received a call to come to the hospital. Whatever joy they were feeling was quickly tempered by the anguish of the birth mother.

For two days after the baby was born, they sat with the birth mother in her hospital room. "It was a tough situation," recalls Lauren. "I stayed with her. I didn't just walk in and take her baby. She was very strong. She tried to do as little nurturing as possible, but, of course, she still held the baby."

At the end of the second day, Lauren and her husband left the room and went downstairs to wait, while a counselor met with the birth mother and reiterated to her that she had the right to change her mind.

"We were nervous about it," Lauren remembers. "We went in and said our goodbyes. There was a lot of buildup—you can imagine. When we were finally leaving, and she was saying goodbye, she was crying, I was crying, everyone was crying. It was the happiest day of my life, but it was also very upsetting."

When their daughter, Maliha, was a year and a half old, Lauren and her husband started talking about adopting again, and again, their fertility specialist asked them if they'd consider frozen embryos. They had already gone through the background checks and social worker visit that Bethany requires for all its adoptions, so they just needed to pick a donor and hope that donor approved them. So Lauren did some research. Many couples doing embryo adoption for the first time now turn to online communities like the Forum Circle's "Snowbabies" and Bethany's embryo adoption discussion board. Adoptive parents share tips and talk about their "embies," and others seek advice about their "FETs," or frozen embryo transfers. Unlike in vitro fertilization, Lauren didn't have to go back on fertility meds, drive to the clinic every few days, check the number of eggs she had ovulated, wait for the doctor to scan them for quality, and have them retrieved for fertilization in the Petri dish. This time, all she had to do was show up and have the embryos transferred to her uterus.

That was all she needed to hear. "Being able to eliminate that first part was," she pauses for emphasis, "huge." It also allowed her the opportunity to experience pregnancy and bond with her babies before their birth. And—perhaps even more critical—it eliminated the risk of the birth mother changing her mind. Because, says Lauren, "I was going to be the birth mother."

Embryo adoption can also be substantially cheaper than its alternatives. Stoddart's Snowflakes and Bethany Christian Services, the two biggest brokers of embryo adoption, charge between $7,000 and $13,000. Some other agencies ask considerably less. Domestic adoptions average around $20,000, while international adoptions are often twice that much. Since potential parents have to pay up-front, it's been common for people to refinance their homes or take out loans. But with the souring of the economy, all but the wealthiest would-be parents are now scrambling to raise money. On a recent afternoon, suggestions on Adoption.com's financing forum ranged from old-fashioned church fund-raising potlucks to selling homemade jewelry at the online store Etsy, and posting the fundraising widget, ChipIn, to Facebook profiles.

HelpUsAdopt.org is a New York–based grant program that raises money for people who can't afford to adopt. Since its founding last year, it has given away $53,000 to eight recipients, but it won't fund embryo adoptions. Becky Fawcett—who founded HelpUsAdopt.org with her husband, Kipp, after their own challenging experience with financing a domestic adoption—says it is primarily because embryo adoptions are so much less expensive than adopting a child.

"What adoptive parents have to pay is extreme," she says. "Think of what you have to earn in a year to have an extra after-tax $30,000 lying around your house. Let's set ethics aside—if an embryo adoption gets to $30,000, $40,000, call me."


Bonnie Steinbock teaches philosophy and bioethics at SUNY Albany and has written widely on frozen embryos, abortion, and stem cell research. Her students like her for her ability to translate the moral and legal issues into terms they can understand. She's also a member of the Ethics Committee of the American Society for Reproductive Medicine. She views the embryo adoption campaign as an anti-abortion, anti–stem cell crusade.

"It's a backdoor way of making embryos seem like people," she says.

In fact, in late April, Ron Stoddart assisted a California man with the "ceremonial" posthumous adoption of two fetuses that his wife had previously aborted. His wife had come to view the fetuses, conceived with other men, as children, and had asked her husband to give them his name for a cemetery memorial.

It's this broad use of the word "adoption" that has Steinbock's colleague, Tipton, of the American Society of Reproductive Medicine, worried. Instead of dismissing embryo adoption advocates as a fringe group, he fears the potential power of adoption language to sway public opinion against—among other things—abortion rights. "It appears to be innocuous, when, in fact, it's not," he says.

Stoddart rejects accusations that Snowflakes' is a personhood campaign and that he was attempting to undermine procreative liberty when he used the word "adoption." "The least of my thoughts was Roe v. Wade. What I was trying to do was create a process that respected the rights of the donors, the rights of the receiving parents, and, ultimately, the rights of the child. And I always have felt that it was going to be much easier for the children if they knew how they came to be—that they were adopted as an embryo, rather than that they were 'donated.' "

But Steinbock says Stoddart and his colleagues are being inconsistent. "What they want is a halfway kind of thing," she says. "If they were really serious" about embryos being pre-born children, "they'd do what the Catholic Church has done—which has been very consistent, actually—and they'd oppose every kind of assisted reproduction out there."

Though Sam Casey may not be calling for protests at fertility clinics, he is waging a more discreet operation: calling for government restrictions that would limit the number of embryos a patient can produce in the first place. He cites studies like the one published last December by Duke University, which found that patients are largely dissatisfied with their options of disposing of their embryos. Not wanting to donate them to another couple, but also uncertain about the moral implications of discarding or donating them to research, many patients are now delaying their decision by paying storage fees of as much as $750 a year. Others have simply walked away, leaving their doctors in the awkward position of having to decide what to do with them.

"People typically delay the decision, deny the decision, or run from the decision," says Casey. "But why is it such a tough decision if it's just property? It's because they really know what it is—particularly the ones who have been through in vitro fertilization and have already had children."

Not surprisingly, Casey is also advocating for restrictions on what patients can do with their embryos, not just how many they can create. "We need to ask, as a nation, whether parents have the right to give proxy consent for their child's death"—by which he means thawing and discarding them or donating them to stem cell research. "Parents should have no greater rights to terminate a living human embryo outside the womb than the rights they now have to terminate the life of any one of their other children living outside the womb."

The real legal struggle over frozen embryos may still be on the horizon: In 1996, the so-called Dickey-Wicker Amendment banned the use of tax dollars to create human embryos or fund research in which they are destroyed. Every year since, Congress has voted to uphold the law. By lifting the restrictions on embryonic stem cell research in March, Obama directed the National Institutes of Health to draw up "guidelines" for how it might proceed if the Dickey-Wicker ban on federal funding for embryonic stem cell research could be overturned. Obama doesn't have the authority to overturn the ban himself—only Congress does.

"Right now, nobody understands that this kind of research isn't going to get federally funded until Congress itself decides to change the rules of the game," says Casey. "If Obama really wants to force it, I guess he can. He's the President. But all of a sudden, I think he'll see a lot of action"—which could very well include another lawsuit like the one Casey filed in 2001. Back then, when it looked as if the NIH would circumvent Dickey-Wicker and push for federal funding of embryonic stem cell research anyway, Stoddart's Nightlight Christian Adoption Agency, with the assistance of Casey, filed suit against the NIH, the HHS, and HHS Secretary Tommy G. Thompson. The suit was ultimately dismissed in 2002, when President Bush withdrew the NIH's proposed plans, or guidelines.

"The pro-life community seems to be playing by the rule of the country so far. But they'll participate in full voice," says Casey, if the NIH guidelines again suggest that the agency will push for federal funding of research on embryos, as they're expected to do. The NIH final guidelines are due to be published on or before July 7.

Congresswoman Diana DeGette, a Democrat from Colorado, originally sponsored a bill that would have overturned Dickey-Wicker, but it was twice vetoed by President Bush. DeGette and Mike Castle, a Republican congressman from Delaware, are again trying to gain support for overturning the ban.

In an interview with the Times, DeGette said she was working with pro-life Democrats who are now open to reversing the policy, which could potentially deepen the divide between pro-life groups that view embryos as pre-born children and those that are more focused on protecting the fetus and are open to stem cell research on embryos. If DeGette's pro-life allies do indeed lobby to overturn Dickey-Wicker, it's likely that the country will see pro-life groups going toe-to-toe over the fate of frozen embryos.


The last time Lauren's husband saw her in person, she was one month pregnant. He was deployed to Baghdad last summer and was home on leave for Christmas.

This afternoon, in early May, he boarded a plane bound for home. The doctor had told him that 25 weeks was about the time that women expecting triplets start to get really uncomfortable. Lauren is at 26 and a half. "I'm feeling it," she says. "I'm already nine-months-pregnant–size."

Her friends and family have been helping her throughout the pregnancy. Today, a girlfriend is helping to clean her refrigerator, since Lauren can no longer bend over. They're having fun, Lauren directing her friend to put the Parmesan here, the yogurt there. They're joking around, laughing. Lauren recently put their house up for sale, since it's too small to accommodate four kids and a nanny. She's had to deal with a mason and a landscaper, and, until recently, was still trying to go to work a few days a week. It's been stressful—she knows that it's a rotten time to be trying to sell. It's likely that she and her husband will be bringing their babies back to the old house instead of to a new one. "The babies will just kind of have to sleep anywhere," she jokes.

Despite all the stress of preparing for the babies' arrival, Lauren is excited to meet her future kids—two boys and a girl. It wasn't that long ago that she doubted this day would ever come. Questions over the personhood of frozen embryos and embryonic stem cell research are the furthest thing from her mind right now.

Tomorrow, she starts shopping around for a minivan, one big enough to seat six comfortably: two adults and four car seats.

"A minivan—ha!" she smiles. "Who would have thought?"

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1 comments
IVFSpecialist
IVFSpecialist

In vitro fertilization has been the beacon of hope for people that are unfortunate to naturally have children due to certain disorders. This is why more research is ought to be done in this regard for better and effective ways of executing IVF.

 
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