Zenit - 2004; LA Times - 2008; “Catholic Position” ; Dign.Person 9/08 .
INFERTILITY PATIENTS caught in the legal, moral and scientific embryo debate
Tough decisions about what to do with unused embryos lead to a bigger question: When does life begin?
By Shari Roan, Los Angeles Times Staff Writer
October 6, 2008
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.”
New York Times
December 4, 2008
Parents Torn Over Fate of Frozen Embryos
By DENISE GRADY
For nearly 15 years, Kim and Walt Best have been paying about $200 a year to keep nine embryos stored in a freezer at a fertility clinic at Duke University — embryos that they no longer need, because they are finished having children but that Ms. Best cannot bear to destroy, donate for research or give away to another couple.
The embryos were created by in vitro fertilization, which gave the Bests a set of twins, now 14 years old.
Although the couple, who live in Brentwood, Tenn., have known for years that they wanted no more children, deciding what to do with the extra embryos has been a dilemma. He would have them discarded; she cannot.
“There is no easy answer,” said Ms. Best, a nurse. “I can’t look at my twins and not wonder sometimes what the other nine would be like. I will keep them frozen for now. I will search in my heart.”
At least 400,000 embryos are frozen at clinics around the country, with more being added every day, and many people who are done having children are finding it harder than they had ever expected to decide the fate of those embryos.
A new survey of 1,020 fertility patients at nine clinics reveals more than a little discontent with the most common options offered by the clinics. The survey, in which Ms. Best took part, is being published on Thursday in the journal Fertility and Sterility.
Among patients who wanted no more children, 53 percent did not want to donate their embryos to other couples, mostly because they did not want someone else bringing up their children, or did not want their own children to worry about encountering an unknown sibling someday.
Forty-three percent did not want the embryos discarded. About 66 percent said they would be likely to donate the embryos for research, but that option was available at only four of the nine clinics in the survey. Twenty percent said they were likely to keep the embryos frozen forever.
Embryos can remain viable for a decade or more if they are frozen properly but not all of them survive when they are thawed.
Smaller numbers of patients wished for solutions that typically are not offered. Among them were holding a small ceremony during the thawing and disposal of the embryos, or having them placed in the woman’s body at a time in her cycle when she would probably not become pregnant, so that they would die naturally.
The message from the survey is that patients need more information, earlier in the in vitro process, to let them know that frozen embryos may result and that deciding what to do with them in the future “may be difficult in ways you don’t anticipate,” said Dr. Anne Drapkin Lyerly, the first author of the study and a bioethicist and associate professor of obstetrics and gynecology at Duke University.
Dr. Lyerly also said discussions about the embryos should be “revisited, and not happen just at the time of embryo freezing, because people’s goals and their way of thinking about embryos change as time passes and they go through infertility treatment.”
Many couples are so desperate to have a child that when eggs are fertilized in the clinic, they want to create as many embryos as possible, to maximize their chances, Dr. Lyerly said. At that time, the notion that there could be too many embryos may seem unimaginable. (In Italy, fertility clinics are not allowed to create more embryos than can be implanted in the uterus at one time, specifically to avoid the ethical quandary posed by frozen embryos.)
In a previous study by Dr. Lyerly, women expressed wide-ranging views about embryos: one called them “just another laboratory specimen,” but another said a freezer full of embryos was “like an orphanage.”
Dr. Mark V. Sauer, the director of the Center for Women’s Reproductive Care at Columbia University Medical Center in Manhattan, said: “It’s a huge issue. And the wife and husband may not be on the same page.”
Some people pay storage fees for years and years, Dr. Sauer said. Others stop paying and disappear, leaving the clinic to decide whether to maintain the embryos free or to get rid of them.
“They would rather have you pull the trigger on the embryos,” Dr. Sauer said. “It’s like, ‘I don’t want another baby, but I don’t have it in me; I have too much guilt to tell you what to do, to have them discarded.’ “
A few patients have asked that extra embryos be given to them, and he cooperates, Dr. Sauer said, adding, “I don’t know if they take them home and bury them.”
Federal and state regulations have made it increasingly difficult for those who want to donate to other couples, requiring that donors come back to the clinic to be screened for infectious diseases, sometimes at their own expense, Dr. Sauer said.
“It’s partly reflected in the attitude of the clinics,” he said, explaining that he does not even suggest that people give embryos to other couples anymore, whereas 10 years ago many patients did donate.
Ms. Best said her nine embryos “have the potential to become beautiful people.”
The thought of giving them up for research “conjures all sorts of horrors, from Frankenstein to the Holocaust,” she said, adding that destroying them would be preferable.
Her teenage daughter favors letting another couple adopt the embryos, but, Ms. Best said, she would worry too much about “what kind of parents they were with, what kind of life they had.”
Another survey participant, Lynnelle Fowler McDonald, a case manager for a nonprofit social service agency in Durham, N.C., has one embryo frozen at Duke, all that is left of three failed efforts at the fertility clinic.
Given the physical and emotional stress, and the expense of in vitro fertilization, Ms. McDonald said she did not know whether she and her husband could go through it again. But to get rid of that last embryo would be final; it would mean they were giving up.
“There is still, in the back of my mind, this hope,” she said.
At the Genetics and IVF Institute in Fairfax, Va., Andrew Dorfmann, the chief embryologist, said many patients were genuinely torn about what to do with extra embryos, and that a few had asked to be present to say a prayer when their embryos were thawed and destroyed.
Jacqueline Betancourt, a marketing analyst with a software company who took part in the survey, said she and her husband donated their embryos at Duke “to science, whatever that means.” It was important to them that the embryos were not just going to be discarded without any use being made of them.
Ms. Betancourt, who has two sons, said: “We didn’t ask many questions. We were just comfortable with the idea that they weren’t going to be destroyed. We didn’t see the point in destroying something that could be useful to science, to other people, to helping other people.”
Ms. Betancourt said she wished there had been more discussion about the extra embryos early in the process. If she had known more, she said, she might have considered creating fewer embryos in the first place.
EMBRYO RIGHTS MUDDLE
IVF Leaving Ethics in the Dust
Frozen Embryos Generating a Host of New Legal Problems
ZENIT News Agency, The World Seen from Rome
LONDON, MAY 10, 2003 (Zenit.org).- A new study revealed that U.S. fertility clinics have about 400,000 frozen human embryos in storage, the Washington Post reported May 8. The number is much larger than previous estimates. The embryos are being held for possible future use, though experience shows that many will simply be left unused.
The question of frozen embryos raises a number of problems. Storage fees run up to $1,500 a year. Yet the idea of throwing them out appalls those who protest at discarding human life. Some groups propose adoption of the unwanted embryos as an alternative to their destruction, but philosophers and theologians are divided over the morality of such action. The Catholic Church has made no official declaration as to whether such adoption is licit.
Further complicating matters are the recent experiments on human stem cells. These raise the possibility that the surplus frozen embryos could be used as a source of tissues either for experiments or commercial use.
The nationwide survey revealing how many embryos are frozen was carried out by the Society for Assisted Reproductive Technology and RAND Corporation. The survey also found that the parents of at least 11,000 embryos have given explicit permission for their embryos to be made available for research.
One group that active promotes adoption of frozen embryos in the United States is Snowflakes. The Fullerton, California-based group is part of the Nightlight Christian Adoptions agency. So far, 19 babies have been born through Snowflakes, which matches infertile couples with embryos from other couples’ IVF treatments, the British newspaper Telegraph reported March 30.
“I believe that every embryo is a child that deserves a chance to be born,” said JoAnn Eiman, a director of Snowflakes. “This is more than mere tissue.”
Congress recently approved $1 million for a public awareness program on embryo adoptions. Half of this has gone to Nightlight, and it is using the money to set up a promotional Web site and make video films and brochures to distribute to clinics. The remaining $500,000 has been distributed to other Christian-based adoption groups and centers.
Abortion rights groups fear adoption programs. The Telegraph quoted Kate Michelman, president of the National Abortion and Reproductive Rights League, as saying that the idea of adopting embryos appeared to be laying the legal groundwork for considering embryos as human beings with full legal rights.
In Spain, too, estimates on the numbers of frozen embryos have risen. The government calculates there are around 40,000 embryos held in 126 clinics, the Madrid-based ABC reported March 7. That’s only a guess, since there is no official national registering process. In 1998 Spain’s National Commission for Assisted Reproduction estimated there were over 25,000 frozen embryos, of which 15% had been held for more than five years.
A debate has raged in Spain over whether these embryos should be allowed to be used for scientific research. The Ethics Committee of the federal Science Ministry has come out in favor of using the stem cells from those frozen embryos that would otherwise be destroyed.
But a Church representative, Inocente García de Andrés, declared that such a use of frozen embryos is ethically unacceptable. The absolute value of human life, including that of the embryo, must be recognized, he said.
And when there’s a divorce
Another series of problems resulting from frozen embryos relates to their fate after a divorce or separation. In Scotland, for instance, a woman discovered that her stored embryos had been destroyed at the request of her ex-husband, the Scotsman reported Feb. 10.
Margaret Grant found out that her former spouse had ordered the destruction after the couple split while undergoing infertility treatment. According to the UK’s Human Fertilization and Embryology Authority, her ex-husband was legally entitled to discard the embryos without his ex-wife’s permission or knowledge.
Margaret Grant is now campaigning for a change in laws so that clinics must inform both partners before embryos are destroyed.
In England a case involving two women, one divorced and the other no longer engaged, will be heard by the High Court this June, BBC reported Jan. 16. Natallie Evans and Lorraine Hadley are challenging, on human rights grounds, a law which says both parties must consent to the storage and use of the embryos.
Evans had six embryos frozen before undergoing cancer treatment, which resulted in her not being able to conceive naturally. Hadley has a 17-year-old daughter from a previous relationship, but suffers from fertility problems because of a medical condition. She wants to use two of her stored embryos to try to get pregnant. Both women say the frozen embryos represent their only chance of having a child.
Conceived as orphans
Apart from frozen embryos, IVF techniques continue to create a variety of other legal conundrums. In England this year the mother of a baby conceived through anonymous donated sperm won a court battle to put an end to her former partner’s being recognized as the legal father.
The Telegraph on Feb. 19 noted that the pair were approved for donor insemination in 1996. But when this proved unsuccessful, the mother and her then partner signed a consent form for IVF treatment involving egg removal, fertilization with an anonymous sperm donor and embryo replacement. By signing the form, the man had acknowledged that he and the woman were being treated together -- even though he was not providing sperm -- and that he would become the legal father of any resulting child.
After years of legal battles, three judges of the Court of Appeal decided that, since the former partner did not provide the sperm, he should not have any legal status as the father of her child.
Also problematic is the question of children conceived after their father’s death. Legal opinions are divided on the issue. Last year a federal judge in the United States ruled that two IVF children conceived and born after their father’s death are not legally his offspring.
Netting and Rhonda Gillett were married in 1993. They had problems conceiving and she began fertility treatments. A year later, Netting was diagnosed with cancer. Because chemotherapy could leave him sterile, he had sperm preserved. After his death in 1995 his wife underwent IVF treatment, resulting in the birth of twins.
The federal judge’s decision in the case means the children are not entitled to Social Security survivor benefits, the Arizona Daily Star reported Nov. 13. U.S. District Judge John Roll said Arizona law requires that a child has to be at least conceived at the time of the parent’s death to be considered an heir.
A legal case in England produced a different outcome. A widow won a battle to have her dead husband recognized as the legal father of children conceived and born after his death, the Guardian reported March 1.
Diane Blood, who first fought a legal battle for the right to have children using her dead husband’s sperm, went to the High Court to have him legally recognized as their father.
Previously a UK law specifically denied children conceived after their father’s death the right to have his name on their birth certificates. This has now been declared to be incompatible with the European convention on human rights.The multiple legal and ethical complications of IVF procedures give good cause to rethink the wisdom of the rush to conceive children at any cost.
CATHOLIC MORALITY and EMBRYO ADOPTION
From the Christian Medical and Dental Association Website:
THE VATICAN has not taken a formal position on the issue. Currently, Catholic scholars have lined up about 2 to 1 in favor of embryo adoption (41-45). The majority hold that although IVF itself is considered illicit in the eyes of the Church, couples seeking to adopt embryos are helping to solve a problem they did not create, and thus are performing a rescue. The countervailing issues posed by the minority scholars, that is, that embryo adoption may violate the sanctity of a couple’s marriage or constitute complicity with the practice of IVF, continue to be debated.
41 Iozzio MJ. It Is Time to Support Embryo Adoption. National Catholic Bioethics Quarterly 2002 Winter; Vol. 2 (4), pp. 585-93
42 Tonti-Filippini N. The Embryo Rescue Debate: Impregnating Women, Ectogenesis, and Restoration From Suspended Animation. National Catholic Bioethics Quarterly2003 Spring; Vol. 3 (1), pp. 111-37
43 Berkman J. Gestating the Embryos of Others: Surrogacy? Adoption? Rescue? Natl Cathol Bioeth Q 2003 Summer
44 May WE. The Embryo Rescue Debate. National Catholic Bioethics Quarterly 2004 Spring; Vol. 4 (1), pp. 9-14
45 May WE. On "Rescuing" Frozen Embryos: Why the Decision to Do So Is Moral. National Catholic Bioethics Quarterly 2005 Spring; Vol. 5 (1), pp. 51-7