This Page

has moved to a new address:


Sorry for the inconvenience…

Redirection provided by Blogger to WordPress Migration Service
The Parents Via Egg Donation Organization: November 2008

Friday, November 28, 2008

New embryo test could detect thousands of hereditary disorders

By Rebecca Robey:

UK scientists have developed a new screening technique that could allow prospective parents to test their IVF embryos for any known genetic disease. The test, dubbed 'a genetic MoT', would cost just £1500 and could be available by next year pending licensing by the Human Fertilisation and Embryology Authority (HFEA).

There are approximately 15,000 known genetic disorders and currently only two per cent of these can be tested for. The HFEA permits couples to use these tests to screen their IVF embryos prior to implantation in order to avoid having children with debilitating hereditary conditions. Now, researchers at the Bridge Centre in London have developed a new technology called 'karyomapping' that they say will be able to detect any genetic disease using a single test.
Conventional genetic screening techniques are limited to searching for the presence of specific genes or gene combinations. Karyomapping, by contrast, examines the embryo's whole complement of DNA and compares it to those of the parents, grandparents and any siblings. By tracking 300,000 specific genetic markers through the generations, the family's genetic history can be mapped out and the presence of any genetic regions associated with familial hereditary disorders in the embryo's DNA can be flagged up.

Professor Alan Handyside, who led the research team, told BBC News Online: 'the current tests can only identify a small number of defects. One of the main things for patients is that, quite often, there isn't a test for their particular condition. This is a single test - a universal method'. Karyomapping has been successfully used to screen embryos at the Hammersmith Hospital, London, but the technology is still in the early stages and further evidence will be needed before the HFEA grants a licence for it to be made commercially available. Prof. Handyside said: 'We are still validating it, but it is going to be a revolution if it works out. It makes genetic screening very much more straightforward'.

Theoretically, the technique could be further applied to determining a predisposition towards many more complicated disorders with genetic elements, such as heart disease, diabetes, breast cancer and Alzheimer's, or even to detecting other genetic traits such as eye colour. This has led to concern that it could be used for the selection of 'designer babies'. The researchers, however, refuted this, saying: 'When you start looking for more than two or three traits, you've just got no chance of getting a match. You'd need thousands of embryos, and we don't have a practical way of making thousands of embryos'. Furthermore, the HFEA will have the authority to specify exactly what the technique can or cannot be used for.

Getting the Lingo Right

I was reading this morning an article from Columbia University titled
The Egg Hunt: Cashing in on college fertility
. And as I read the article it began as a typical article about egg donation, why college girls donate, how much money they receive, what they plan to do with the money etc..

Then the journalist ask the egg donor:

"But how does she feel about her DNA’s being used to help a couple produce a baby?“

It’s a great feeling,” she laughs loudly. “I’m a mom without any of the actual stress of being a mom!” But then she abruptly stops. “Are you looking for a more serious answer? I don’t know. I don’t know how I feel yet, really.”

Okay hold the presses.

Egg donors are not our children's mothers in any shape of the word. And each and every time I read something like this it irritates me on so many levels.

I want to know for instance - when this egg donor was going through her psych evaluation did they ask her how she felt about parting with her genetic material. She says she doesn't know how she really feels -- yet. Shouldn't that have been caught during screening? And regardless of how funny she thinks she's being -- I do think there is a speck of truth that maybe down deep she doesn't think she's our children's mother.

And to be frank -- I am not okay with that.

In my day to day dealings with people in general about egg donation I often hear terms like:

"The donor mother"
"The real mother"
"The biological mother"

These terms are all incorrect. Egg donors are egg donors period. They are donating a single cell to be fertilized with another single cell, and we hope out of that process an embryo is created. The reality is -- sometimes it is, and sometimes it's not.

We as recipient mothers carry our babies to term, we raise them, love them, care for them, worry about them.

The egg donor does not.

Where is the egg donor in all of this? The egg donor is an integral part of this. Without her, we wouldn't have our child. Without our partner, or sperm donor we wouldn't have our child, and most importantly, without you and me -- we wouldn't have our child.

Are we grateful? You bet we are, more than you will ever know. But are egg donors our children's mothers?

Not on your life.

So let's get the lingo right -- and let's continue to educate the masses on what egg donation really is -- which is more than just paying an egg donor 5-10k for eggs. It's a process that all parties go through: The egg donor and the recipient parents alike.

The other part of this article that I found interesting and would like to address is the comment from Barnard’s newly inaugurated president Debora Spar. Spar says that she’d like to see a public registry in place so that if egg donors want to track their children and if children want to track their genetic parents, they’d be able to do that.

I disagree with Ms. Spar on a few issues. While I think a public registry is a good idea. It needs to be voluntary. Contrary to popular belief not all egg donors thing twice about donating their eggs. Once it's over it's over for them. Many many egg donors I have interviewed over the years tell me they don't worry about and obsess about an egg they discard each month when they menstruate -- and many feel the same way about this procedure. This process is not akin to adoption where a birth mother becomes pregnant, carries that baby and then places that child out for adoption. This is about egg donation, where a pregnancy may or may not occur -- and let's face it, egg donors move on. Many go on get married and have their own children and having their own families. They don't donate to become parents, or have someone knock on their doors 18 years later and say "Oh hi, I am your child, you know the one you created 18 years ago, you know your egg donor cycle?" -- That's not what egg donors sign up for.

And Ms. Spar -- the children that result in egg donation are not the egg donors children, they are the children of the recipient mothers who carry and birth them themselves, or they are the children of the recipient mothers who contract with a gestational carrier to carry and birth that baby. And again, that's not to say we don't love and respect our egg donors we do, but they really are not the mothers of our children -- I can't emphasize that point enough -- WE ARE.

I think that everyone needs to be really careful in the verbiage used when talking about egg donation because frankly it's delicate, and we all work very very hard in making sure the right language is used, and most importantly having the right mindset.

Sunday, November 16, 2008

Souls On Ice -- Yes or No?

Aanis Elspas is a mother of four. Unlike most parents, she had three of her children simultaneously. The nine-year-old triplets were born in 1997 after Elspas underwent a series of in vitro fertilization treatments for infertility. Her oldest child, 10, is the happy result of a prior ivf treatment round. Elspas worked hard to get her children, and is grateful to have them. But four, thanks very much, are plenty. The problem is that Elspas also has 14 embryos left over from the treatment that produced her 10-year-old. The embryos are stored in liquid nitrogen at a California frozen storage facility—she is not entirely sure where—while Elspas and her husband ponder what to do with them.

Give them away to another couple, to gestate and bear? Her own children’s full biological siblings—raised in a different family? Donate them to scientific research? Let them…finally…lapse? It is, she and her husband find, an intractable problem, one for which there is no satisfactory answer. So what they have done—thus far—is nothing. Nothing, that is, but agonize.

“I don’t have the heart to thaw them,” says Elspas, who works as media relations director for a multi-birth networking group called the Triplet Connection. “But then again, I don’t have the will to do something with them.”

Elspas is by no means alone, either in having frozen human embryos she and her husband must eventually figure out what to do with, or in the moral paralysis she feels, surveying the landscape of available choices. In fact, she is part of an explosively growing group. In 2002, the Society for Assisted Reproductive Technology—the research arm for U.S. fertility doctors—decided to find out how many unused embryos had accumulated in the nation’s 430 fertility clinics. The rand consulting group, hired to do a head count, concluded that 400,000 frozen embryos existed—a staggering number, twice as large as previous estimates. Given that hundreds of thousands of ivf treatment rounds have since been performed, it seems fair to estimate that by now the number of embryos in limbo in the United States alone is closer to half a million.

This embryo glut is forcing many people to reconsider whatever they thought they thought about issues such as life and death and choice and reproductive freedom. It’s a dilemma that has been quietly building: The first American ivf baby was born in 1981, less than a decade after Roe v. Wade was decided. Thanks in part to Roe, fertility medicine in this country developed in an atmosphere of considerable reproductive freedom (read: very little government oversight), meaning, among other things, that responsibility for embryo disposition rests squarely with patients. The number of ivf rounds, or “cycles,” has grown to the point that in 2003 about 123,000 cycles were performed, to help some of the estimated 1 in 7 American couples who have difficulty conceiving naturally. Early on, it proved relatively easy to freeze a lab-created human embryo—which unlike, say, hamburger meat, can be frozen, and thawed, and refrozen, and thawed, and then used. (To be precise, the technical term is “pre-embryo,” or “conceptus”; a fertilized egg is not considered an embryo until about two weeks of development, and ivf embryos are frozen well before this point.) Over time—as fertility drugs have gotten more powerful and lab procedures more efficient—it has become possible to coax more and more embryos into being during the average cycle. Moreover, as doctors transfer fewer embryos back into patients, in an effort to reduce multiple births, more of the embryos made are subsequently frozen.

And so, far from going away, the accumulation of human embryos is likely to grow, and grow, and grow. And in growing, the embryo overstock is likely to change—or at least complicate—the way we collectively think about human life at its earliest stages, and morally what is the right thing to do with it. At some point, embryos may alter or even explode the reproductive landscape: It is ivf embryos, after all, that are at the center of the nation’s stem cell debate, which itself has prompted a new national conversation about life and reproductive liberty, creating new alliances as well as schisms. In 2001, as one of his first major domestic policy decisions, George W. Bush banned federal funding for labs developing new stem cell lines using leftover ivf embryos; then in May 2005, the U.S. House of Representatives passed a bill approving funding for stem cell research using these same embryos, setting the stage for an eventual conservative showdown. In the course of this debate, embryos have emerged as another tool for truly hardline conservatives looking for new ways to beat back abortion rights. Like “fetal rights” laws that seemingly protect unborn children from acts of homicide, “embryo rights” are being waved about as a weapon in the assault on abortion rights, as anti-abortion lawmakers talk about seizing control over frozen embryo stores; limiting the creation of new embryos; or both.

But the impact of the embryo is also taking place on a more subtle and personal level. The glut’s very existence illuminates how the newest reproductive technologies are complicating questions about life; issues that many people thought they had resolved are being revived and reconsidered, in a different emotional context. As with ultrasound technology—which permits parents to visualize a fetus in utero—ivf allows many patients to form an emotional attachment to a form of human life that is very early, it’s true, but still life, and still human. People bond with photos of three-day-old, eight-cell embryos. They ardently wish for them to grow into children. The experience can be transforming: “I was like, ‘I created these things, I feel a sense of responsibility for them,’” is how one ivf patient put it. Describing herself as staunchly pro-choice, this patient found that she could not rest until she located a person—actually, two people—willing to bring her excess embryos to term. The presence of embryos for whom (for which?) they feel a certain undefined moral responsibility presents tens of thousands of Americans with a dilemma for which nothing—nothing—has prepared them.

A new demographic is wrestling with questions initially posed by contraception and abortion. A world away from the exigencies, mitigating circumstances, and carefully honed ideologies that have grown up in and around U.S. abortion clinics, it is people like Janis Elspas who are being called upon to think, hard, about when life begins, and when it is—or is not—right to terminate it. They are in this position, ironically enough, not because they don’t want a family, but precisely because they do. Among the nation’s growing ranks of ivf patients, deciding the fate of frozen embryos is known as the “disposition decision,” and it is one of the hardest decisions patients face, so unexpectedly problematic that many decide, in the end, to punt, a choice that is only going to make the glut bigger, the moral problem more looming and unresolved.

“Are they people? Aren’t they people?”

To show just how difficult embryo disposition can be: Dr. Robert Nachtigall, a veteran San Francisco reproductive endocrinologist, directed a study of patients who had conceived using ivf together with egg donation, another rapidly growing niche of fertility medicine. As Nachtigall and his colleagues at the University of California-San Francisco were interviewing these parents, they were struck by comments made, separately, by several couples.

Hard as it was deciding whether to go ahead with egg donation, these parents said, it was harder still deciding the fate of their leftover embryos.

“Until recently, I don’t know if any of us were aware of the scope of the embryo dilemma,” Nachtigall told colleagues at the 2005 annual meeting held by the American Society for Reproductive Medicine (asrm), the trade group for fertility doctors. Struck by these unprompted revelations, he and fellow researchers decided to do a new study, this one looking explicitly at the way patients think about their unused, iced-down embryos. The study was published in 2005 in the journal Fertility and Sterility. Strikingly, Nachtigall found that even in one of the bluest regions of the country, which is to say, among people living in and around San Francisco, few were able to view a three-day-old laboratory embryo with anything like detachment. “Parents variously conceptualized frozen embryos as biological tissue, living entities, ‘virtual’ children having interests that must be considered and protected, siblings of their living children, genetic or psychological ‘insurance policies,’ and symbolic reminders of their past infertility,” his report noted. Many seemed afflicted by a kind of Chinatown syndrome, thinking of them simultaneously as: Children! Tissue! Children! Tissue!

An earlier study, conducted by psychologist Susan Klock and colleagues at the Northwestern University School of Medicine, found that many patients begin ivf with some notion about how they will dispose of surplus embryos. (The choices come down to five: use them; donate them for research; donate them to another infertile person; freeze them indefinitely; or have them thawed, that is, quietly disposed of.) What Klock also reported was that many couples found their thinking transformed once treatment was over. More than half the couples who had planned to dispose of their embryos decided, instead, to use them, or donate them. Conversely, seven of the eight couples who had planned to donate them to research decided to use them, or dispose of them. Nearly all who had planned to donate their embryos to another couple found that, when push came to shove, they could not relinquish their potential genetic offspring. In short: Almost all reconsidered, not in any way that could be neatly summarized. All in all, 71 percent changed their minds about what to do. Also striking: Only about half of patients with embryos stored for more than three years could be located. The rest were incommunicado.

Nachtigall’s study elaborated on these findings. Couples, he found, were confused yet deeply affected by the responsibility of deciding what to do with their embryos. They wanted to do the right thing. All of the 58 couples in his study had children as a result of treatment, so they knew, well, what even three-day-old embryos can and do grow into. (Nachtigall is currently studying a much larger sample of couples, where both egg and sperm come from the parents. It should answer the question of whether couples who use donor eggs are in any way distinct in their thinking about embryos.) “Some saw them as biological material, but most recognized the potential for life,” Nachtigall told colleagues at the asrm meeting. “For many couples, it seems there is no good decision; yet they still take it seriously morally.”

For virtually all patients, he found, the disposition decision was torturous, the end result unpredictable. “Nothing feels right,” he reported patients telling him. “They literally don’t know what the right, the good, the moral thing is.” In the fluid process of making a decision—any decision—some try to talk themselves into a clinical detachment. “Little lives, that’s how I thought about them,” said one woman. “But you have to switch gears and think, ‘They’re not lives, they’re cells. They’re science.’ That’s kind of what I had to switch to.” Others were not able to make that switch, thinking of their embryos as almost sentient. “My husband talked about donating them to research, but there is some concern that this would not be a peaceful way to go,” said one woman. Another said, “You start saying to yourself, ‘Every one of these is potentially a life.’”

Many were troubled, Nachtigall said, by the notion of donating embryos to research or to another couple, and thereby losing control over their fate and well-being; they seemed to feel a parental obligation to protect their embryos. “I couldn’t give my children to someone else to raise, and I couldn’t give these embryos to someone else to bear,” said one woman. Another woman described her embryos as a psychic insurance policy, providing “intangible solace” against the fundamental parental terror that an existing child might die. “What if [my daughter] got leukemia?” said yet another, who considered her frozen embryos a potential source of treatment. A patient put the same notion more bluntly: “You have the idea that in a warehouse somewhere there’s a replacement part should yours get lost, or there is something wrong with them.”

For others, embryos carried a price tag that made them seem like a consumer good; a few parents considered destroying them to be a “waste” of all the money spent on treatment.

“You weigh what’s best,” Nachtigall quoted one parent as saying, but what’s best is not, often, clear. This parent continued: “Are they people? Aren’t they people? In part of my mind, they’re potential people, but the point is, it seems odd to me to keep them frozen forever. It seems like not facing the issue.” A patient who had decided to donate embryos for research said, “We’ve agreed that it’s the right thing for us to do, but the final step is to get the forms notarized, and we haven’t done it. I will honestly say that it will be a day of mourning.”

For those couples who did reach a decision, the resolution came as a great relief, bringing with it, his report noted, “a profound sense of completeness and resolution.”

Nachtigall also found that patients sometimes disposed of embryos in novel ways that fell short of actual plug-pulling. In a version of the rhythm method of contraception, he learned, some patients (though none of the ones in his study) solved their dilemma through the laborious—and expensive—process of having leftover embryos transferred into the woman’s uterus at a time in her monthly cycle when implantation would be unlikely. Others buried embryos. Still others could not bring themselves to dispose of them at all. “We’ll have a couple more pregnancies and we’ll just grow the whole lot,” one father told Nachtigall and his team.

Of the 58 couples Nachtigall and his group interviewed, the average couple had seven frozen embryos in storage. The average embryo had been in storage for four years. Even after that much time had elapsed, 72 percent had not decided what to do, and a number echoed the words of one patient: “We can’t talk about it.” The embryos keep alive the question of whether to have more children, a topic on which many spouses disagree. “I still have six in the bank,” said one woman, who had not given up the idea of bearing them. “They call to me. I hate to talk about it. But they call to me.” Her words are reminiscent of a comment made by the singer Celine Dion, who, after undergoing ivf in 2001, later said, in describing her plans for a second child: “This frozen embryo that is in New York is my child waiting to be brought to life.”

“Like pets, or natural resources, or pieces of art”

It should be noted that the confusion felt by parents is shared by the minds who guide American jurisprudence. As University of Wisconsin law professor and bioethicist Alta Charo pointed out at the 2005 asrm meeting, the embryo issue tends to emerge as a point of dispute in divorce cases. Tracing the confused path of judicial decision-making, Charo offered one situation in which a Tennessee court ruled frozen embryos to be potential children, or effectively so, and—in the court’s traditional role of acting in the best interests of children in custody suits–awarded a batch of disputed embryos to the parent who intended to bring them to term. That decision was reversed by a second court, which chose to treat the embryos as property and proposed dividing them, like furniture, between the ex-spouses. But the state’s Supreme Court ultimately awarded the embryos to the spouse who did not intend to use them. In general, Charo said, courts tend to this latter approach: They take pains to avoid situations where one person will bring the embryos to term against the wishes of the ex-partner, privileging the right not to procreate over the desire to do so.

For the most part, courts often do regard embryos as property, but property with an elevated moral status, “like pets, or natural resources, or pieces of art,” as Charo put it. In Louisiana, however, embryos have been designated as “juridical persons.” “No one knows what this means,” Charo said, comparing the status of Louisiana embryos to that formerly assigned to slaves: not fully human under the law, but deserving of some rights. One thing “juridical person” does mean is that in Louisiana, fertility clinics are forbidden to dispose of embryos. They are directed to act in the best interests of the embryos, whatever that may be: a kind of guardian ad litem of the embryo.

Similarly, the federal government, in its role as regulator, has found the embryo a slippery creature to define. In 2002, the U.S. Department of Health and Human Services began distributing grants to groups willing to raise public awareness about what the Bush administration likes to call “embryo adoption.” Also known as “embryo donation,” this is a process whereby embryos are relinquished by whoever created them and handed over to another couple, or person. In most states, this is essentially a property transfer, not an adoption, and advocates for the infertile, as well as old-line reproductive rights groups, fear the use of the word “adoption” is one more attempt to confer humanhood on the embryo, a backdoor anti-abortion sally. They are right: To dramatize his opposition to federal funding for stem cell research, Bush in May 2005 posed with a group of “Snowflakes” babies, children who started life as leftover ivf embryos and were donated to other couples, thanks to the brokerage of an explicitly Christian, explicitly pro-life embryo adoption group called Snowflakes.

Inconveniently for the president, at that very moment the U.S. Food and Drug Administration was in the process of categorizing the human embryo as biological tissue, thereby putting into effect strict disease-testing requirements that would make embryo adoption, or donation, impossible. Clinics feared they would need to close down their donation programs. At the last moment, an exemption for embryos was carved out, and embryo donations were permitted to go forward. The infertility lobby was delighted and a little smug, not just because doctors and patients’ groups support embryo donation (which they do), but because “tissue” remains the designation conferred on embryos by the fda. Like abortion rights groups, the infertility field likes this designation, which helps preserve for it total reproductive freedom by encouraging the notion of the embryo as a multicelled clump of tissue.

But the idea of potential personhood has clearly been implanted, so to speak; human embryos are going to continue to be a political battleground as anti-abortion advocates include them in the umbrella concept of “pre-born life.” During last year’s stem cell debate, then-House Majority Leader Tom DeLay referred to embryos as “living, distinct human beings,” while a conservative columnist referred to them as “microscopic Americans.” The president calls them “nascent human life.” As Slate’s Will Saletan has pointed out, pro-life lawmakers periodically threaten all-out war on the reproductive liberty enjoyed by ivf patients; Republican Rep. Chris Smith of New Jersey hinted at this when he said, “The public policy we craft should ensure that the best interests of newly created human life is protected.” Senator Sam Brownback (R-Kan.) has suggested that the government should limit the number of embryos created to one or two per ivf cycle.

Unnerved, advocacy groups for the infertile and those who serve them called a press conference in 2005, where Sean Tipton, spokesman for asrm, said that “patients control and make the decision about what happens with those embryos, and that’s the way it is now, and it’s important that that’s the way it stays.” The problem is that many patients do view embryos as nascent human life and, paralyzed by this thought, cannot decide how to decide.

It’s an issue that affects anybody with an interest in reproductive issues—which is to say, pretty much every American. Some think that the embryo glut may offer the next serious challenge to Roe. “For the moment couples still have dispositional control, but I predict that that is going to be challenged very soon,” Alta Charo said at the 2005 meeting, speaking to doctors and fertility clinic staffers. Arguing that pro-life advocates can taste “total victory” after “an ongoing nibble-at-the-edges battle” involving statehouse measures like informed consent and mandatory waiting periods, Charo predicted that somewhere, soon, “some obscure legislature” will propose to seize control of frozen embryos, the measure will be challenged, and the ensuing lawsuit will end up in the U.S. Supreme Court. Traditionally, she pointed out, abortion rights involves weighing the interests of the woman against those of the fetus, and up to now the woman’s interests have been considered paramount. But now the interests of the embryo, or fetus, or potential child, can be separated out. This, she said, is a watershed development.

For those who want to test the core of Roe v. Wade, Charo told the fertility specialists, “you guys are the perfect opportunity to separate the question of embryos and best interests, and the woman’s right to direct her body. You take a law like Louisiana’s, saying that personhood begins at conception, and that you cannot discard embryos. Now the Supreme Court has the ability to look at the status of the embryo, not as compared with the woman’s right to control what she wants to do with her body. There is no bodily interest. It’s entirely possible that the first real challenge to Roe will be looking at the embryo in isolation. The question about discard is very, very important. This will be where they start their litigation strategy, to chip away at Roe.”

It should be pointed out, however, that even anti-abortion conservatives are not united in their ideas about the embryo and whether it has rights, or best interests, or even the potential for life. Once a person contemplates an embryo—really looks at it, under a microscope or in a photograph—his or her opinion is often changed, and not in any consistent or predictable direction. This is true for pro-choice and pro-life alike. While researching a book on assisted reproduction and its impact, I interviewed California Rep. Dana Rohrabacher, a reliably anti-abortion Republican member of the House. Rohrabacher was one of some 50 Republicans who defied the president by voting in favor of federal funding for stem cell research using surplus ivf embryos. For Rohrabacher it was not abstract: He and his wife, Rhonda, went through ivf treatment and have triplets as a result.

Going through that process, Rohrabacher told me, fundamentally changed his thinking about life and its origins. “For a long time I’ve been pro-life, and I still consider myself to be pro-life,” he reflected, sitting on the front porch of his Huntington Beach bungalow, which, inside, had been taken over by the demands of triplet care. “I have done a lot of soul-searching but also a lot of rethinking about reality, and what’s going on here, and I have come to the conclusion that I’m…first, I’m still pro-life. But I always said that life begins at conception. But…I was always predicating that on the idea that life begins at conception when conception begins in a woman’s body.”

Now, Rohrabacher realizes, conception can take place outside the human body. That, for him, is a meaningful difference. The crux of the matter: Is the embryo in the womb, or is it in a lab? “I don’t think that the potential for human life exists in a human embryo until it’s implanted in a human body. So you are not destroying a human life by basically not using a fertilized egg. These are not potential human lives until they are implanted in a body. Left alone, they will not become a human being. When they are implanted in a female body, they have a chance to become a human being, so I still would be opposed to abortion.”

“People do not want to inherit embryos”

Less examined has been the fact that the embryo glut presents an immediate and pressing problem for the very people who helped create it: fertility doctors. In clinics around the country, doctors are at their wits’ end trying to figure out what to do with embryos that have fallen, willy-nilly, under their moral, medical, and, possibly, legal purview. The way this happens is: When patients agree to have embryos frozen, they sign forms stating what should be done with the embryos should the patients divorce, disappear, or stop paying storage fees. After treatment has concluded, many patients eventually do stop paying, disappear, move, leave no forwarding address. In such cases, doctors are, at a certain point, technically free to dispose of abandoned embryos. But many are reluctant to take that step. They are terrified that at some point a patient will come back and sue them for—well, for something.

“Nobody does it [destroys abandoned embryos],” says Alan DeCherney, the editor of Fertility and Sterility and a reproductive endocrinologist who is now at the National Institutes of Health. “It’s a hot topic. People think the risk of holding them is less than the risk of destroying them.”

And the risk of holding them is considerable. “I have tons of embryos, and I can’t track down the owners,” said one Los Angeles doctor, Vicken Sahakian of the Pacific Fertility Center, sitting in his posh Wilshire Boulevard office. Sahakian practically had his head in his hands, thinking about all those embryos. “It’s one of the main problems I have. I have thousands of embryos from patients who have been through this program for, what, 10-, 12-plus years, changing addresses, and never called back, never paid storage fees—you can’t track them down.” Sahakian does the best he can to whittle down his own embryo glut; he runs a strong embryo donation program, encouraging couples to donate embryos to other patients and handling the logistics. He has also hired a collection agency to try to track down patients and force them to make a resolution. His “biggest nightmare,” he said, is that he will be unable to sell his practice when he is ready to retire, because no doctor will want to buy a practice that comes with a closetful of unclaimed embryos and the vague, terrible responsibility they entail. “The person buying it does not want to buy the embryos. That’s the rule,” he said. “People do not want to inherit embryos. So what do you do with them? I have embryos that have been here since 1992.”

The overages have grown to such proportions that companies now exist, solely, to manage embryo inventory. Back in 1990, Russell Bierbaum, who at the time worked for a sperm bank, had a vision of the future, and what he saw was: lots and lots of frozen embryos. So he founded a company called ReproTech, which can be hired to assume and maintain doctors’ embryo inventory, as well as handle transport, a tricky process in and of itself. (What box do you fill out, exactly, on the FedEx form? “Warning: Contains microscopic Americans”?) It took a while for the idea to come to fruition, he says, but now business is booming: He has two facilities, in Minnesota and Florida, and is constantly adding new storage tanks. Bierbaum prefers to assume responsibility for embryos soon after their creation. His employees stay in touch with patients, keeping addresses current, periodically calling to say hello and review the options. In a few instances, he says, he will take over abandoned embryos and attempt to track patients down. It is therefore people like ReproTech staff members—rather than, say, ministers or psychologists—who often are the ones discussing, with patients, fundamental questions touching on birth and death and life and reproduction, all the essential questions of humanity. “We end up being the counselors without the credentials,” acknowledges Bierbaum, “just answering the questions, being available.”

It’s hard to know how, exactly, the embryo overstock will go away. The rand study found that only about 3 percent of unused embryos have been slated to be donated for research. In England, unused embryos are destroyed after five years, though this government policy did not occur without controversy; the first time embryos were set to be destroyed, a group of pro-life advocates staged protests. The deadline was extended, but eventually the embryos were destroyed. Other countries, such as Germany and Italy, forbid the freezing of embryos. In those countries, every embryo made must be implanted. Both of these ideas are of course anathema to American fertility advocacy groups and to the medical field, because it would open the door to that dreaded phenomenon, governmental control over human life and its disposition.

So what are we going to do with our embryo glut? Robert Nachtigall believes that with better patient counseling and logistical coordination between fertility clinics and research labs, many more unused embryos could be directed toward stem cell research, and that many patients would be happy to know that their embryos are being used to find a cure for afflictions such as Parkinson’s disease and juvenile diabetes.

“I think it’s a mistake to call it a glut,” says Nachtigall. “I mean, these embryos are created in a process as hundreds of thousands of couples attempt to overcome infertility, and their presence is perhaps an unanticipated side effect of the use of advanced reproductive technology. But there is nothing inherently negative or wrong about their existence, and as we turn our attention to them, we may find that indeed they could be a tremendous resource for science, the country, and for mankind, for that matter.”

The problem is, few fertility clinics counsel patients about disposition, at least not at any length; and because of the ban on federal funding, few labs can receive human embryos for research. Nor has the fertility profession served itself or its patients entirely well, encouraging the idea that embryos are multicelled clumps of tissue. They are multicelled clumps of tissue, it’s true, but they are also more complicated and more emotionally fraught. One of the powerful findings of Nachtigall’s study was how isolated patients felt in making the disposition decision; how they longed for counseling, advice, some sort of out-loud moral conversation between people who had been through, and thought through, the same issues. Whether the reproductive rights community might ever hold such a grand, collective conversation seems unlikely, in this charged political atmosphere. But it would be useful, to put it mildly.

Meanwhile, the technology itself is so new that nobody knows what the expiration date on embryos might be. Might all these embryos become nonviable and nonproblematic? Unlikely. Recently, a San Francisco woman gave birth using an embryo that had been frozen for 13 years. So patients like Janis Elspas continue to agonize over their aging embryonic stores. An Orthodox Jew, Elspas believes her religion would permit her to quietly terminate what are, basically, little more than fertilized eggs. “But considering all the pain and suffering we went through to get those embryos, I still consider it the destruction of a God-given gift.”

After weighing all the options, and rejecting them, one patient says wryly, but a little wearily: “Maybe when I die, they’ll just bury my embryos with me.”

Liza Mundy is a staff writer for the Washington Post.

Mom: There Are Other Things To Hate You For Than Donor Egg.

Okay - so my child and I are talking this morning about current events - he
thinks for instance that banks trick us when they charge us interest when we
buy a house or a car which frankly makes me laugh. My child has such a cool view of the world -- I so wish I viewed it like him.

Anyhow, as I said -- we were talking, and I am not sure how it came up but I
said, "You know I could really use your help, I know of some Mom's out
there who are feeling sort of nervous about the whole donor egg thing and
telling their kids."

He was sitting next to me at the time and looking very thoughtful said "Sure
I can help, what's up?" So I explained to him how some parents worry about
being rejected from their children if they should disclose the donor egg
aspect to them, and some parents worry that their children might even hate them."

So my ever thoughtful child is quiet for a moment, I can see his little mind working and he says:

"Oh come on Mom - kids from DE are NOT going to hate their parents because
they had to use an egg from someone else. There are more important things
to hate your parents over!"

By now I am sitting up straight on the couch, and I twitched a moment, running through my head many scenarios in which he'd hate me for and I said "Oh yeah, like
what?" as I narrowed my eyes.

With a gleam in his eye he delves right in as if he's an attorney at the Supreme Court arguing his case: Okay Mom, you asked for it, here's my short list:

"No electronics during the week? Come On! That is RIDICULOUS! I hate that!
My bed time at 8:00 PM when Grace and Nate across the street who are MY age
get to stay up until 9:00 PM, I hate that too. And just because Dr. Alexander
says only 1 hour of screen time a day during the weekends, well that's
silly, you are my Mom, not him! I really hate that.

He ponders a moment, his hand on a his chin -- Let's see what else
Mom - "Why is it you have to watch a movie first or with me, I think I am
only enough to watch a PG movie BY MYSELF! You don't let me watch what I
want on TV, you have to see it with me - and Oh, and the fact I can't keep
my room anyway I want, that is the dumbest thing I have ever heard. So you
see mom, there are WAYYYYY more important things for kids to hate their kids
over than this whole DE egg thing, gosh!"

By now he's laughing out of the ridiculousness out of my original question and I am trying so hard to keep a straight face, as I want him to know I am taking him seriously.

I hugged him and thanked him for his sage advice and asked him if I could share this with other parents. He said he didn't care, and he asked me if he could go watch "Fairly Odd Parents" I said "No, that's not an okay show to watch." So he gave me a raspberry and left to go read Harry Potter for the umpteenth time throwing over his shoulder - "You have no idea how hard it is being a kid!"

So you see, there are way more important things to hate your parents over
instead of DE.

Now if you excuse me, I have to go laugh some place where he won't hear me- after all my child is only eight.

Note I said "eight" not eighteen.

Monday, November 3, 2008

"Your Children are not Your Children"

"They are the sons and daughters of life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.

You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday."

© Kahlil Gibran, 1923, 1973.

One of my friends forwarded this poem to me and it really resonated with me because it's so true. Regardless of how our children come to us they really aren't ours. Depending on your faith belief system our kids are on loan.

One of my most favorite lines by this author is:

'Half of what I say is meaningless, but I say it so that the other half may reach you'

Sunday, November 2, 2008

Should Egg Donation Be Regulated?

And really what does it mean to regulate? Wikipedia says this about regulation:

“Regulation can be considered as legal restrictions promulgated by government authority. One can consider regulation as actions of conduct imposing sanctions (such as a fine). This action of administrative law, or implementing regulatory law, may be contrasted with statutory or case law.

Regulation mandated by a state attempts to produce outcomes which might not otherwise occur, produce or prevent outcomes in different places to what might otherwise occur, or produce or prevent outcomes in different timescales than would otherwise occur. Common examples of regulation include attempts to control market entries, prices, wages, pollution effects, employment for certain people in certain industries, standards of production for certain goods, the military forces and services. The economics of imposing or removing regulations relating to markets is analyzed in regulatory economics.”

As it stands right now today, in 2008, there is no regulation regarding egg donation. Zero, zip, nada, nothing. The egg-donor industry is not required to keep records of its egg donors.

What does that mean? And I am asking these questions because I truly don’t know.

Does this mean agencies don’t keep records of who applies, who’s accepted into their program, who’s donated, and to whom? I know clinics by law are required to keep records on their patients I think forever. They may go away to storage some place but I don’t think medical records can be destroyed.

(Someone correct me if I am wrong)

There is a doctor in Arizona, Dr. Jennifer Schneider who has gone to Congress to lobby for a National Egg Donor Registry, which I fully support. The concern about a National Egg Donor Registry is that it will potentially dissuade egg donors from donating because it would mean they would be giving personal information to a registry with the understanding they might be contacted down the way from parents or off spring their genetics helped create.

I say make the medical portion of it mandatory, identify egg-donors by number, and if the personal information part of that is a big hairy deal let’s make that part “voluntary” don’t make it mandatory. I think that’s the part that’s making everyone say “ooooh not sure if that’s a great idea, we’ll lose egg donors.” We’ll lose egg donors if we pass a law making compensation illegal. I am not so Pollyannaish to think that egg donors don’t appreciate the money they make donating their eggs. Even my egg donor, who was amazing, was very very honest when she said in her profile:

“I guess it was partially for financial reasons ($2000 can put a nice dent in my student loan debt), but also I want to help others...”

It doesn’t get any more honest than that, and that’s fine with me.

So back to regulation and registries – I don’t think that egg donors are going to run away in fear if they are given the option to volunteer with a national registry in the event the parents of these kids need to look up their egg donor for medical reasons later in life.

Clinics and agencies vary in regards to how much information they collect about the egg donors they recruit. I know of agencies and clinics who like mine collect a 16-18 page egg donor profile on prospective egg donors. This profile covers everything from A to Z. Medical history, social history, educational background, physical characteristics, personal characteristics, reproductive history and what not. There are other clinics and agencies who collect the basics, medical information, eye color, hair color, race, and that’s it. And for the majority of the recipient parents I engage with sometimes the lack of information about their egg donor is extremely frustrating.

I think what the media and general public sometimes don’t understand that those of us who are choosing to create our families through egg donation are not looking for mothers for our children. This registry wouldn’t mean that 18 years later an egg donor is going to receive a knock on her door from the off spring she helped create with a “Hi Mom, nice to meet you.” It would be a way for those kids who are products of egg donation to have access to their medical information, which I think is a basic right. And not to channel Dr. Phil -- but let's get real here. These kids did not sign up to be brought into the world this way, and its the least we can all do to make sure the needs of our children are met.

The other issue revolving around regulation is the compensation part. The American Society of Reproductive Medicine’s Ethics Committee (ASRM) has written a guide regarding egg donor compensation . In this guide it states:

1. Financial compensation of women donating oocytes for infertility therapy or for research is justified on ethical grounds.

2. Compensation should be structured to acknowledge the time, inconvenience, and discomfort associated with screening, ovarian stimulation, and oocyte retrieval. Compensation should not vary according to the planned use of the oocytes, the number or quality of oocytes retrieved the number or outcome of prior donation cycles, or the donor’s ethnic or other personal characteristics.

(I personally think because this is not a law, but a guideline that some agencies skirt around this – if I am reading this correctly compensation should be set at one price and one price only. An egg donor should not be compensated more if she’s a proven donor? An egg donor should not be compensated more if her ethnic background is hard to come by? For instance Asian donors, Jewish Donors, and Middle Eastern Donors, are in high demand – and the amount they are compensated reflects that. Same for those egg donors who are deemed “super stars”.) - Marna

3. Total payments to donors in excess of $5,000 require justification and sums above $10,000 are not appropriate.

(Okay here’s another hot spot for me – I can list several egg donor agencies right now who have signed an agreement with SART that they do and will abide by the ASRM Ethics Committee guidelines governing payments to donors. But guess what folks they don’t. They get around those guidelines by stating that the egg donors fee is only for 10k, however, the egg donor agency is also compensating her for lost wages from her job, or other expenses that go above and beyond regular and customary travel expenses). If an egg donation agency does not agree with or abide by ASRM's guidelines, then don't sign the agreement. I think that's where agencies get themselves into trouble. There is nothing wrong with stating you don't agree with something. The sticky wicket comes from saying you do agree, and then doing the complete opposite.)

4. To discourage inappropriate decisions to donate oocytes, programs should adopt effective information disclosure and counseling processes. Donors independently recruited by prospective oocyte recipients or agencies should undergo the same disclosure and counseling process as donors recruited by the program.

5. Oocyte-sharing programs should formulate and disclose clear policies on the eligibility criteria for participants and on how oocytes will be allocated, especially if a low number of oocytes or oocytes of varying quality are produced.

6. Treating physicians owe the same duties to oocyte donors as to any other patients. Programs should ensure equitable and fair provision of services to donors.

7. Programs should adopt and disclose policies regarding coverage of an oocyte donor’s medical costs should she experience complications from the procedure.

So the big question is – who should regulate the egg donor industry? Should the clinics and agencies regulate themselves, or should the government step in and regulate something they have no knowledge, understanding, or idea about.

Our answer might be in a new group I have had the pleasure of learning about and becoming involved with – this group is called EDSPA. EDSPA is a multidisciplinary organization that promotes cooperation, education and professional ethics in the matters of surrogacy, egg donation, pre-planned adoption and related areas. This group in particular shows great promise I think because they truly want what’s best for the patient. And they recognize the patient not only as the recipient/intended parents who is seeking services but also the egg donor who has so graciously given a very important part of herself so folks like me can become Moms. Regardless it will be interesting to see how EDSPA grows and blossoms in the years to come.

It’s my hope of course that regardless of what solution we in the United States find to resolve the issues we have now in the egg donor industry we are able as a group to come together and work out a fair and equitable solution that can accommodate not only the egg donor and recipient parents, but the medical community as well.

Labels: , , , , , , , , , ,