Enter the wild west of the embryo 'adoption' industry

By Fusion Staff  |  June 10, 2015 | 11:00am
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Two weeks before Christmas 2013, Jennie Granados took a road trip with her husband, 7-year-old son, and newborn baby to Sacramento, 70 miles north of their home in Tracy, California. She was nervous the entire ride up: she was going to meet the genetic parents of the son to whom she had just given birth.

Her five-week-old, Abel, was an “embryo donation” baby, so although Granados had carried and birthed him, she wasn’t genetically related to him. The embryo from which he developed had been frozen in a cryopreservation facility in Utah 12 years earlier, left over from another couple’s in vitro fertilization (IVF) treatments. In 2012, that couple, Alan and Angela Taylor, had given their eight remaining embryos to the Granados family through a Christian “embryo adoption” agency. FedEx was their stork.

Granados had talked with Angela Taylor on the phone while trying to get pregnant with her embryos, but meeting in person was daunting. She feared the Taylors would feel entitled to her child, that the two families wouldn’t get along, and that the children would be confused about how they were related. Abel was a full genetic sibling to Angela’s two children, 10 and 12, and not biologically related to the brother who shared the same womb at all.

Her apprehension quickly melted away upon meeting the Taylors at a cafe in downtown Sacramento that Saturday afternoon.

“We just hit it off right away. The kids were playing together. We just sat and talked for hours,” Granados told me. “She never made me feel like it was her child. He’s my child.” Since then, the families have stayed in touch, through email, Instagram, Facebook, and semi-regular visits to each others’ homes. They go to watch each others’ kids at softball and baseball games. They regard each other as cousins — family members they love but don’t get to see as often as they might like. And they have bizarre jokes born of their unusual arrangement. Granados teases her now 9-year-old, Ricky, that his baby brother is actually the elder sibling because Abel’s embryonic cells were frozen in 2000, six years before Ricky was born.

Today, there are more than half a million embryos in cold storage in the U.S., and with the increasing popularity of IVF treatments for women who are having children later in life, the number may continue to grow. Because implanted embryos don’t always “take” in IVF, doctors advise making extras. That can lead to leftovers, raising questions for families, medical facilities, policymakers and activists about what should be done with them. The Taylors and Granadoses are an example of one possible approach and demonstrate the evolution of the concept of the American family, in this case due to the convergence of two seemingly unlikely bedfellows: reproductive technologies and the conservative right.

When the first IVF ‘test-tube babies’ were created in the late 70s, embryo donations were handled by fertility clinics that matched donors with recipients anonymously. But in the late 90s, pro-life conservatives, who saw spare embryos from IVF treatments as abandoned little souls frozen in time, started founding “embryo adoption” agencies. These agencies, most of which have religious affiliations, brought over guidelines from traditional adoptions, like background checks and an open process in which the biological and adoptive parents agree to tell the child about his or her family history. (Bonus of the transparency: preventing inadvertent incest.) The agencies got a boost in 2005, when President George W. Bush campaigned against using embryonic cells for scientific research while surrounded by families with kids wearing “Former Embryo” t-shirts.

Pro-embryo-rights advocates often say there are 610,000 embryos in cold storage in the U.S. that need to be “adopted,” but only about 60,000 are thought to be available for donation, according to the U.S. Department of Health and Human Services. The rest are either earmarked for the couples who created them or have been donated for scientific research. (And there at least a few frozen embryos, like those belonging to actress Sofia Vergara and her ex Nick Loeb, that are caught up in custody battles.)

The exact number of families in the U.S. who have children thanks to embryo donations isn’t known, but the two largest embryo-donation centers in the country say they are responsible for over 900 births in the last two decades. The embryo adoptions have led to a new kind of extended family, where the ties that bind are the genetics of the children who developed from a common batch of frozen embryos, and a warping of time, due to cryonic interludes of as long as two decades in some cases.

But they haven’t necessarily led to diverse families. Many of the agencies that work in this space have religious affiliations. They receive federal funding and thus are not supposed to discriminate against would-be parents based on religion, sexual orientation, or age. But the agencies play the role of embryo matchmaker, letting donors choose among recipients based on occupation, education level, age, income, health history, ethnicity, sexual orientation, religious affiliation and how long a couple has been married. (All the agencies, donors and recipients I spoke with said donors don’t receive monetary compensation. That could run afoul of state “baby-selling” laws. Recipients are, however, allowed to reimburse donors for embryo storage fees and medical costs.)

Because agencies identify as Christian institutions, they often attract religious donors, and many donors tend to choose families that resemble their own. That means that individuals who are single, LGBTQ or agnostic could be at a disadvantage.

Meanwhile, smaller organizations without federal grants, like Embryos Alive, are explicitly discriminating. Bonnie Bernard, its director, told me her agency didn’t deal with same-sex couples because of her personal beliefs. “As far as gays and lesbians, we don’t do that…[because of] the Bible,” she said.

That said, it’s still far more popular for people trying to conceive to use donor sperm or an egg than a whole embryo because they prefer at least one parent is genetically related to their future children. In 2013, the first year for which we have stats about donated embryos, there were 1,100 attempts to implant frozen donated embryos, according to the Society for Assisted Reproductive Technology, which resulted in over 400 births. There were eight times as many attempted pregnancies with donated eggs, and with a higher success rate; over half of them resulted in live births.  “When you’re giving up an embryo—particularly for a couple that’s had a child—that embryo is a potential sibling to their child,” said Dr. Marcelle Cedars, the director of the University of California, San Francisco Center for Reproductive Health. “The psychosocial relationship of the donor and recipient is very different with a gamete [an egg or sperm cell] versus an embryo. There is much more widespread donation of eggs and sperm.”

A decade after they did IVF, Angela and Alan Taylor decided it was time to take their remaining eight embryos out of frozen limbo. They contacted Nightlight Christian Adoptions’ Snowflakes Embryo Adoption program and started the process of getting certified as donors. Nighlight, like other embryo “adoption” agencies, tries to keep all embryos together, to increase the chances that any future children will grow up in the same family. The Taylors knew they didn’t want any more children, but parting with the embryos was harder than Angela Taylor had imagined.

Around the same time, the Granadoses were discovering they might not be able to have a second child. Jennie Granados was diagnosed with low ovarian reserve, a condition in which the ovaries’ pool of viable eggs are severely diminished. She only had a five percent chance of conceiving, so they began considering adopting through Bethany Christian Services. But Granados felt guilty because she already had a child, while other couples waiting to adopt a baby didn’t. After hearing this, a friend who’d adopted two children through the same agency told her that the Christian adoption agency also had an “embryo adoption” option. Granados was intrigued.

After Granados inquired, the staff at Bethany referred her to several embryo donation agencies, including Nightlight, which has run its Snowflakes program since 1997. Both Bethany and Nightlight have federal grants to support their embryo adoption efforts thanks to funds earmarked by Congress in 2002 to promote a “frozen embryo adoption public awareness campaign.” At the time, Arlen Specter, the late Republican Senator from Pennsylvania, told the Associated Press that the purpose was to use excess embryos from IVF treatments to help infertile people start families and “to produce life.”

Since then, the program, which is administered through the Department of Health and Human Services’ Office of Population Affairs, has doled out more than $25 million in grants to mostly pro-life Christian organizations. Since the program’s inception, Bethany Christian Services has received roughly $1.6 million. Nightlight, one of the biggest beneficiaries, has received over $2.6 million to push embryo adoptions, according to numbers publicly available on the HHS website. Only in recent years has the government awarded sizeable grants to non-religious agencies, such as Boston IVF and RESOLVE.org, a patient advocacy group.

The fact that the government calls them “embryo adoptions,” as it does on the HHS website, rather than “embryo donations” is problematic. The American Society for Reproductive Medicine, a membership organization for health workers, cautions people to avoid the term. “Embryos are deserving of special respect, but they are not afforded the same status as persons,” said an ethics report from the group. “Equating an embryo with an existing child and applying the procedural requirements of adoption designed to protect existing children to embryos is not ethically justifiable and has the potential for harm.”

The families and agencies I spoke to saw embryo “adoption” as a great equalizer—a chance for aspiring parents to start families and experience parenthood in full, pregnancy included. The process can cost from a few thousand dollars to over $20,000. That’s expensive, but cheaper than going through IVF, where embryos have to be made from scratch.

“It’s nice living in a country that has so many options for families,” said Becky Henderson, who donated her embryos through Nightlight’s Snowflakes program. But she admitted that because many of the organizations tend to be Christian, traditional Christian families might have an edge. Nightlight “is open to anyone. [But] by using an agency from a more Christian traditional background—that’s going to attract those of us who have more traditional values,” Henderson told me.

When the Granadoses started the matching process through Nightlight in August of 2012, they created a profile detailing their life stories and preferences, which included a desire for a family without a history of major mental or health issues. Their profile was sent to the Taylors, who had created a similar dossier. The Granadoses didn’t have a strong preference for a particular ethnic or religious background, but when they got the Taylors’ profile they were happy to find out that Angela was Spanish and Alan was white. The Granadoses had a similar background: Jennie’s husband, Richard, is Mexican and she’s white. They also appreciated that the couple was religious (though that didn’t factor heavily into their decision, Granados told me). They immediately felt a connection. The Taylors felt the same way and by October, the match had been approved.

At that point, the embryo transfer process began, during which participants must contend with both medical and property law issues. Medically, embryos are considered tissue, not persons. While the FDA has guidelines for tissue donation, requiring a genetic history and medical testing of the donor at an FDA-approved lab, it created exemptions for embryo donors, as long as the recipients are warned the donors haven’t been tested.

These technologies have been around for decades, but the law hasn’t caught up to the science. The legal status of embryos varies by state. Some state courts deem embryos property;  some as non-living persons, and still others as somewhere between person and property, since they have the potential for human life. That makes drawing up contracts for embryo donations super complicated.

“There’s not one way that couples are hooked up, for lack of a better word,” said Nanette Elster, a reproductive law expert and member of the American Bar Association’s Special Committee on Bioethics and Law.

Most states don’t have laws on the books that specifically govern how embryo donations should go, so some agencies and the law firms broker them like property transfers, through which donors relinquish all their ownership and parenting rights. Others advise clients to go through a formal adoption after the child is born. A handful of states—including Delaware, Georgia, North Dakota, Oklahoma, Texas, Utah, Virginia, Washington, and Wyoming—do explicitly say donors aren’t the legal parents of any children that result from assisted reproduction, which includes embryo donation. (In Florida, only married embryo recipients have those protections.)

For the Taylors, once the contracts were signed, they had agreed to effectively relinquish their rights to the children that might be born of their embryos. Often with traditional adoptions, biological parents have a window of time during which they can change their minds, but that’s not the case for the embryonic version. In the U.S., the legal mother of a child is usually the woman who births it (and yes, that can be complicated with surrogate births).

The Granadoses went through all eight of the Taylors’ embryos before conceiving Abel. Four of the embryos didn’t make it through the thawing process and three of them failed to implant. But that doesn’t always happen. The contracts that Nightlight brokers stipulate that once the recipient family is done having children, ownership of the leftover embryos goes back to the donors, who then can choose a second family.

For instance, Kelli Gassman and her husband, Dan, adopted 11 embryos in 2012. After having two children, there are still five embryos remaining. Like the Taylors and Granadoses, the Gassmans and their donors, Chris and Becky Henderson, have developed a tight-knit extended family. So now, the two couples are choosing a second recipient family together.

“I don’t know why anyone would not include the first adoptive family…It just makes sense to have them as part of the process,” Becky Henderson told me. “It’s very important we find the right couple for us because all three families will be connected by our kids.”

From what I can gather, their families are in a unique situation. This is the first time since Nightlight started its embryo “adoption” service in 1997 that this has happened, and it’s pushing the boundaries of how we define— legally, socially and emotionally—the concept of parenthood and family.

It’s unclear what the future of embryo donation is. Laws need to get worked out so families don’t get caught up in legal blackholes — but that’s unlikely to happen any time soon. By the time it does, the issue may be less urgent. One fertility doctor at UCSF’s Dr. Cedars told me she’s seen a steep decline in embryo donations over the last two decades. She used to see 10-20 cases a year. Nowadays, it’s more like one. Dr. Valerie Baker, the director of the Stanford University’s fertility and reproductive health program, said some institutions, including Stanford, don’t have embryo adoption programs set up because demand is low. Experts expect there will be fewer embryos created in the future because reproductive technologies have improved and doctors now need to produce fewer embryos than they did in the past, leaving fewer spares behind.

If the donations do become rarer, that makes these genetic extended families all the more interesting — a quirk of a period of time when our reproductive health technologies, while amazing, are inexact, leaving complicated leftovers out in the cold.

Daniela Hernandez is a senior writer at Fusion. She likes science, robots, pugs, and coffee.

 
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