Tuesday, October 7, 2008
Infertility patients caught in the legal, moral and scientific embryo debate
Six years of frustration and heartbreak. That's how Gina Rathan recalls her attempts to become pregnant.
Finally, she and her husband, Cheddi, conceived a daughter, now 3, through in vitro fertilization. About a year later, she became pregnant with a second child, naturally. Their family was complete.
Then, a year ago, the Fountain Valley couple received a bill reminding them that their infertility journey wasn't quite over. They owed $750 to preserve three frozen embryos they'd created but hadn't used.
"I don't see them as not being life yet," says Gina Rathan, 42, a pharmaceutical sales representative. "I thought, 'How can I discard them when I have a beautiful child from that IVF cycle?' "
Many other former infertility patients also appear to be grappling over the fate of embryos they have no plans to use: An estimated 500,000 embryos are in cryopreservation in the United States.
As with the Rathans, this unexpected conundrum often arises well after the infertility crisis has passed, triggering impassioned and highly personal debates about the science and ethics of human life. The discussion boils down to a fundamental question: What is this icy clump of cells smaller than a grain of sand?
Across the country, people with less personal stakes in the matter are asking that question as well.
Colorado voters will decide in November whether to amend the state's constitution to assert that an embryo is a person. Indiana lawmakers have proposed legislation that would allow abandoned embryos to be adopted for implantation by another couple. New Jersey legislators have moved to allow unused embryos to become wards of the state. And Georgia and West Virginia are considering legislation that would give embryos "personhood" status.
Although these proposals are sponsored in large part by abortion opponents, infertility patients nationwide -- whose feelings about abortion run the gamut -- are finding themselves ensnared in a debate about when life begins.
"They are in the middle of this ideological war, although they may not be aware they are in the middle of a war," says Renee Whitley, co-chairwoman of the national advocacy committee for Resolve, an organization supporting people with infertility. "This is the politics of embryos."
Couples with leftover frozen embryos have three choices: discard them, donate to research or donate to another couple for pregnancy. The default option is to leave the embryos in a vat of minus-310-degree liquid nitrogen, paying for the storage and deferring the decision; in some cases, their children or other relatives may someday have to decide what to do with a most peculiar inheritance.
Embryo-protection legislation could ultimately winnow those options and, say doctors and consumer advocates for the infertile, possibly limit future infertility treatments.
"This is taking a pretty private decision and placing it squarely in the public's eye," says Nanette Elster, director of the Health Law Institute at DePaul University in Chicago.
Freezing excess embryos is a common strategy for in vitro fertilization. To make embryos, a doctor injects a woman with potent hormones to produce eggs. These are then harvested in a surgical procedure. The eggs are mixed with sperm in the laboratory, and some of the developing embryos are transferred into the uterus. A single cycle with fresh embryos costs more than $15,000, often not covered by insurance.
Subsequent attempts at pregnancy are less costly if frozen embryos are on hand, and the supply of extras spares a woman another round of harsh drugs to produce eggs. About half the people who undergo in vitro fertilization end up with one or more frozen embryos.
But no one can predict how many embryos will be produced and used. And as the success of the treatment has improved over the last two decades, doctors are now transferring fewer embryos to avoid multiple births.
Meanwhile, the glut of stored embryos grows and more families find themselves in a position some liken to playing God.
"They are wrestling with how to think of embryos. A person? Nothing? Something in between?" says Dawn Davenport, an adoption researcher who has an online radio show and a website called Creating a Family.
Infertility clinics report that they lose contact with about 15% to 25% of families with frozen embryos. According to the American Society for Reproductive Medicine's guidelines, a clinic can consider embryos abandoned and dispose of them if five years have passed without contact with the couple and if significant efforts have been made to reach the couple. But few doctors dispose of the embryos, says Dr. Richard J. Paulson, chief of reproductive endocrinology and infertility at USC's Keck School of Medicine.
"To my knowledge, no one in the United States has ever done that," he says. "We're all paranoid that a couple will show up the next day and say they want their embryos."
The federal government supports, via funding, only one option: adoption to another couple for pregnancy. In a highly publicized event at the White House in May 2005, President Bush posed for pictures with children born from adopted embryos -- sometimes called "snowflake adoptions," referring to the fact that the embryos are frozen and unique. And the Department of Health and Human Services funded a three-day conference in May to promote this alternative.
About 1,000 babies have been born in the U.S. from embryo adoption since it became available 10 years ago, said Ron Stoddart, who founded the Snowflakes Embryo Adoption Program, based in Fullerton.
However, research by Anne Drapkin Lyerly, an associate professor of obstetrics and gynecology at Duke University, as well as other surveys, have found that most families prefer not to donate embryos for adoption. In a paper published last year, of 1,020 couples with frozen embryos, 22% said they were somewhat or very likely to donate to another couple. Slightly more said they would probably thaw and discard them. Almost half said they would donate them to science, including for use in stem cell research.
Donating to research appears to represent to many couples a kind of peaceful middle ground.
Human embryos are the primary source of stem cells, and the uptick in stem cell research has fostered a growing demand for donated embryos. Although such research destroys the embryos, the broader effort is aimed at curing disease. This goal resonates with couples who have endured reproductive health problems, says Lee Rubin Collins, co-chairwoman of Resolve's national advocacy committee. "Reproductive medicine is about creating life, not ending it," she says.
Angela and Dave Casella tried for three years to have a baby. Using in vitro fertilization, Angela Casella became pregnant with twins on two occasions but miscarried both times. Devastated, the Huntington Beach couple took a year to grieve and think about their options. They decided to adopt a child but still had to contend with a single embryo left in cryopreservation.
They chose to donate it to research.
"We felt maybe this was the embryo that was going to close the deal for science," Angela Casella, a Pilates instructor, says of the embryo. "Maybe she didn't grow up to be a scientist or a doctor or anything you would want for your child. But maybe she would still do some good for the world."
Other couples who want to donate to science find that researchers are not nearby, that their infertility clinic isn't associated with a research program and thus can't facilitate donations, or that their state prohibits research on embryos.
"There are tremendous obstacles to being able to donate to research," Collins says. "The research community hasn't caught up with the desire of many patients to contribute."
Infertility patients may support embryo use in research, but much of the nation appears to be more conflicted.
No federal funding is available for embryonic stem cell research, and only eight states -- including California -- fund such research within their borders. Last year, Bush vetoed a bill that would have allowed federal funding for new stem cell lines derived from fertility clinic embryos.
In a survey of 1,003 adults in the U.S. published in the spring issue of the New Atlantis, about half the respondents said destroying embryos is unethical because they're humans, but 41% -- some of the very same people -- said it was ethical to destroy human embryos in the course of research if the research can help people.
"People are not quite sure where this set of issues belongs," says Yuval Levin, bioethics director for the Ethics and Public Policy Center, an ecumenical think tank in Washington that publishes the New Atlantis. "To some it's an element of the abortion debate. For other people it has to do with science and medicine. We've never really thought through what the moral status of the embryo is."
That's beginning to happen. The proposed Colorado amendment states, "The term 'person' or 'persons' shall include any human from the time of fertilization." If it is passed, the courts would have to interpret the meaning of those words, says Kristi Burton, sponsor of the initiative and founder of Colorado for Equal Rights, which focuses on the rights of unborn children. The goal of the amendment, says Burton, a college student, "is to respect and protect all life."
Fertility advocates are skeptical that "personhood laws" wouldn't limit their choices for reproductive healthcare. In August, Resolve released a statement opposing the Colorado amendment.
"The motivation is abortion," says R. Alta Charo, a professor of law and bioethics at the University of Wisconsin at Madison. "If the Supreme Court allows states to declare embryos as personhood, you would be in a position to say immediately that all abortions have to stop."
The reproductive rights of infertile women may not be the target, says Dr. William Schlaff, director of reproductive endocrinology at the University of Colorado Health Sciences Center, "but the implications are massive depending on how this law would be used if adopted."
For instance, what happens to embryos determined to be afflicted with serious genetic diseases? "What do you do with that embryo then?" Schlaff asks.
Says Burton of the initiative's possible ramifications: "All those things would have to be dealt with later on. . . . We don't see it as preventing infertility treatment."
As for the Rathans, over the course of several weeks, the couple ruled out discarding the embryos. They discussed donating them to research but heard that option was a logistical nightmare. They pondered giving the embryos to another infertile couple.
"Before I became pregnant, I thought the decision would be easier for me," Gina Rathan says. "But when it actually happened, I realized these are three potential lives."
Finally, the couple paid for three more years of cryopreservation.
"I think about the embryos every day," Rathan says. "I am their mother. I see them as my own children. They are the DNA from my husband and I. It's something I worry about, especially when the three years is over and I have to make a decision again."
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