Out of the Freezer, Into the Family - The booming, and bizarre, business of embryo adoption.
By Liza Mundy
Posted Tuesday, May 31, 2005, at 11:50 AM ET
On May 24, as the House of Representatives was preparing to vote on federal funding for embryonic stem-cell research, President Bush appeared with a prop designed to dramatize his opposition. The prop was a baby—21 babies, rather, former frozen embryos that had been relinquished by their biological parents and gestated by other couples. The president wanted to show what an embryo can grow up to be if it doesn't grow up to be a stem-cell line; that there are other options, aside from eternal replication in a Petri dish, for the nation's half-million frozen embryos that are left over from in-vitro fertilization procedures. What the president did not seem to know was that for months the U.S. Food and Drug Administration had been preparing new tissue-testing restrictions that would make embryo donation impossible, foreclosing the very option he was holding up before the cameras.
But somebody, apparently, realized this in the nick of time. Shortly before the stem-cell vote went forward, an amendment to the new FDA rules was quietly announced, noting that a strict infectious-disease-testing requirement would be waived for donated embryos. Clinics, which had been braced to shut down their donation programs, suddenly found the problem had evaporated. "It was an eleventh-hour reprieve," says Diahn Oakley, spokeswoman for the National Embryo Donation Center, who began frantically e-mailing fertility clinics to let them know.
This latest twist in what you might call embryo politics is emblematic of the incoherence and unusual alliances that prevail on a reproductive frontier unfamiliar to most Americans. The president's baby-cuddling highlights the willingness of the conservative right, which normally opposes assisted reproductive technologies as a step on the slippery slope to abortion, to harness IVF to satisfy its own anti-embryo-research agenda when it needs to. Meanwhile, the fertility industry finds itself counting on unlikely allies in a battle against often inscrutable FDA policies. And for a public that may well have never heard of embryo "adoption," the president's photo op opened a window onto a niche of fertility medicine that is booming, rather bizarre, and all but uncontrolled.
"HAPPILY married Catholic couple without children seeking donor embryos," reads one posting on a Yahoo! group called SnowBabies, a kind of exchange mart for people seeking to get or give away frozen embryos. The posting goes on to explain how this truly unfortunate couple went through fertility treatment after fertility treatment: how they conceived twins, which were born premature and, tragically, died; how the mother's eggs are now deemed too old for a successful pregnancy; and how the two of them "desperately want to 'be pregnant' again and experience what we feel we have been cheated out of—a full-term pregnancy and a baby to hold in our arms once again." There are many other postings, some from couples who have finished treatment and now have excess frozen embryos; most from infertile people seeking precious leftovers before they get discarded by couples who are ready to stop paying "storage fees."
The department of second chances in the fertility industry is a thriving business these days, for many reasons. For one thing, unlike most of IVF, donated embryos are cheap. One irony of fertility medicine is that the whole costs much less than the part. When patients get to the awful point in infertility treatment where IVF clearly will not work with their own genetic material—the sperm is flawed, perhaps, or the eggs are past their expiration date—they often have to decide whether to obtain part of the raw material from other sources. If they resort to an egg or sperm donor, they'll have to spend quite a lot. This is particularly true with egg donation, which runs as high as $20,000 including drugs, egg retrieval, fertilization, transfer, and payment to the donor. Embryos, however, come ready-made, and embryos cannot be paid for. Though the fertility industry likes to promote the idea that they are multicelled clumps of tissue, it accepts that it would be morally unacceptable to pay money for an embryo, just as it's morally unacceptable to pay for a baby. Typically, a person receiving donated embryos would have to pay only for the medical costs of the transfer and maybe some retrospective storage fees: anywhere from $1,000 to $4,000, making it way cheaper than ordinary IVF—cheaper, too, than most conventional adoption.
It probably seems less risky, in some ways, than conventional adoption as well. Given what we now know about the importance of the uterine environment, many parents, rightly or wrongly, would just as soon not have to worry about a birth mother's prenatal behavior. And as the posting shows, while pregnancy was once viewed as a potentially deadly ordeal, it's now viewed as an "experience" many women crave. Birth from a donated embryo also, at least in theory, allows would-be parents to bypass the oversight that states have evolved to regulate adoptions of the conventional kind, including psychological evaluations, credit reports, lawyers for parents and birth mothers, and home visits by licensed clinical social workers.
There is no central oversight for embryo transactions or even, in most cases, state legislation. Instead, over the past several years a number of informal approaches have developed. The first is something like the Yahoo! group, an ad hoc arrangement, often facilitated by the Web, whereby genetic parents and would-be parents make contact with one another and find their way tentatively toward some sort of agreement, drawing up questionnaires and drafting who-we-are-letters, hammering out what sort of relationship they will or will not have afterward. The second involves a brokerage of sorts: an agency that works with both relinquishing and would-be parents, to facilitate the matching process. There are a couple of these agencies, including NEDC (which also provides the medical procedures), and they tend to be motivated by a combination of Christian charity and pro-life conviction. Like the Bush administration, these agencies like to refer to the embryo-donation process as an adoption, to promote the idea that the embryo is a child with a child's full rights. For the exact same reason, it's a term that the fertility industry abhors, opening up, as it does, the prospect of government oversight of what fertility medicine prefers to think of as tissue.
Chief among the embryo brokers is Snowflakes, the embryo-adoption agency responsible for the babies in whose presence President Bush was basking. Founded in 1997 by Nightlight Christian Adoptions, Snowflakes opposes IVF medicine because of what doctors rather antiseptically refer to as "embryo wastage" but tries to make the best of the situation by giving some of them a living future. Like conventional pro-life groups, Snowflakes even does "rescues," springing into action whenever it hears about a couple on the verge of no longer paying storage fees. Last summer I interviewed the Snowflakes director, Lori Maze, a likable, down-to-earth woman, trained as an attorney, who confided that she had been your basic pro-choice career gal until she found herself infertile, at which point—and this is not uncommon—she began to view every aborted baby as one she herself could have adopted, and her views on the abortion issue did a 180. She now runs a very efficient operation, which has made Snowflake the flagship agency for embryo adoption.
Technically, embryos cannot be adopted; in most states they are legal property, so what really happens is that property rights are transferred. Nevertheless, Snowflakes does a conventional adoption home study and generally tries to make sure the embryos will end up in an "appropriate" family. And the "genetic" parents can define appropriate: If they want their embryos to be adopted by Chinese Buddhists, or Republicans, or short rich people who live west of the Mississippi, Snowflakes will store the embryos until they find the exact right fit. "We get a ton of stay-at-home mom preferences," Maze says. "Or they'll say part-time work is OK, but the child care has to be provided by a family member." She tries hard to accommodate but grants that "there are some things I can't promise. If they say I want a family that won't get divorced, I say, I can't promise you that." The drift of preferences is clear: The typical Snowflakes donor, while not necessarily Christian or conservative, is unlikely to favor gays, lesbians, or even single mothers. "Most want a mommy and a daddy for their embryos."
The third approach is what Sean Tipton, spokesman for the American Society for Reproductive Medicine, is careful to refer to as "embryo donation for the purpose of family building," deliberately avoiding the dread word adoption, conferring, as it does, humanhood on a four-cell-to-eight-cell entity. In these arrangements, the IVF clinic itself acts as a kind of ad hoc liaison between donor and recipient. There is not necessarily a home study: If you can pay the costs, you can have the embryos, whether you're a short Republican or a gay person or a single mother. Up to a point, recipients can choose the donors based on a sketchy list of characteristics; there may or may not be contact, depending on what the parties request.
There is at once a bargain-basement flavor and a sci-fi aura to all these setups. One of the odder qualities of embryo donation is that often the agencies—Snowflakes, NEDC, and the clinics—will cobble together different groups of embryos into one donated batch. Typically, embryos are frozen in tubes called straws, a few at a time; depending on how many embryos were created to begin with and how many were used, an IVF patient might have one, two, or 12 left over. To maximize a recipient's chances of success, agencies will guarantee a minimum number of embryos, and if this means mixing two or three groups of unrelated embies (as they're called), so be it. Thus a woman receiving donor embryos can gestate twins that are genetically unrelated. It would be intriguing to know if, when he was proffering the Snowflakes babies, the president fully appreciated what a freaky, cutting-edge niche of reproductive medicine he was endorsing.