With so much in the press these days about donor anonymity and how to handle that in the future, I wanted to post an article from the AFA that also talks about how to deal with the future issues in ART. Enjoy, and let me know your thoughts! www.theafa.org
“A Matter of Privacy, Responsibility and Choice –
It’s a private issue gone very public. It’s a complex web of personal philosophy, religious orientation and social conscience about which everybody, and we mean everybody, has a strong opinion. But the fact is, and should be, what you do with the frozen embryos you don’t use is your decision and yours alone.
Of course it never feels like the quite right time to discuss this touchy topic.
Maybe you’re taking your first steps on the infertility treatment path. Along with all the mind-numbingly complicated instructions, you’re handed a form asking you what to do with excess embryos before you have a single one.
Maybe you already beat the odds. With absolute devotion, you danced the assisted reproduction tango, created viable embryos and made a baby. Or two or three. Your family is complete. Your head is bursting with school, soccer, recitals and bedtimes. Frozen embryos?
Or maybe you’ve given up on treatment, leaving behind the heartbreak, the disappointment and possibly, a few fertilized eggs. You’ve moved on.
So chances are pretty good that those embryos, protected in liquid nitrogen, aren’t at the top of your to-do list. None of us who have experienced infertility anticipates having any embryos, let alone extras. After we’re done with ART, we tend to ignore or deny the delicate question of disposition of the unexpected surplus.
At some point, though, all of us with cryopreserved embryos will have to make a final and forever decision about them. It’s not easy. They’re our unique responsibility and our unique burden. Because while our embryos remain suspended in time, we don’t.
Hence, this fact sheet, a guide to anticipating some of the quandaries we confront and exploring the choices we have.
A good initial cryopresevation consent agreement usually outlines three disposition choices:
Thawing without intent to transfer. Lucinda Veeck, M.L.T.,D.Sc., Director of Embryology at the Center for Reproductive Medicine and Infertility in New York City, says at her program, 53% of the 364 patients who have gone through with their choice have elected this option.
Donation for research. While raging controversy and federal limits have restricted directed giving to stem cell research, there are myriad other well-accepted research initiatives, such as staining for DNA and genetic analysis that rely on embryos. And despite the ban on federal funding for stem cell work, privately funded institutions are moving forward. Reports Dr. Michael Alper of Boston IVF, one such center, “There is no shortage of donations.
At CRMI, Dr. Veeck reports that about 41% of patients have gone the research route.
Donation to other infertile people. Logistically and emotionally complex, donation for transfer has its own guidelines established by the American Society of Reproductive Medicine. It’s a many-layered effort by both the donors and recipients, requiring a six-month quarantine of the embryo, blood and genetic testing and retesting of donors, blood tests for the recipients. Both parties must sign informed consent documents addressing relinquishment and acceptance of parental rights should children result, as well as liability, among other things. Whether or not it is an anonymous transaction, both donors and recipients are strongly urged to get psychological counseling.
“We’ve only donated embryos from two patients because of the difficulties inherent to follow-up testing,” remarks Dr. Veeck. “And in the 6% group desiring to donate, most have not actually given away their embryos yet.”
How Was I Supposed To Know?
These days, even before there’s an embryo, there’s the consent form. That daunting document demanding that a patient know, ahead of time, what to do with remaining embryos…if there are any. For infertile people, that’s one incomprehensibly huge “if.”
So hopeful patients fill in the blanks with the best intentions. The rub is that when it actually comes time to act on that initial agreement, people often find that first choice isn’t the one they want after all. It’s important to remember that first consent form is not the actual disposition form. You can shift gears at any time.
Changes of heart happen for a million different reasons: divorce, the death of a spouse, economic hardship, a multiple birth after the first cycle. Sometimes the partners in a relationship simply aren’t on the same page – one may want more children, the other has no interest. One partner may see the embryos as their potential children, the other regards them as left over sperm and eggs.
Inevitably, life’s constant evolution leads to embryos that sit, sometimes for an embarrassingly long time.
“People have them frozen and then forget about them,” says Dr. David Hoffman, Medical Director at IVF Florida/Reproductive Associates in Margate, Florida. “But they still don’t want to get rid of them. I don’t think patients think of a frozen embryo as a person, but it’s tough to let go.”
Dr. Veeck adds, “Many patients respond by doing nothing. They continue paying for storage fees rather than make a decision. And I think that’s the appropriate thing until they’re quite sure what they want to do.”
Behind the Choices
The language of disposition seems straightforward and precise. In fact, most people are sandbagged by how profoundly affected, confused and conflicted they are when it comes time to commit.
So, most elect to do nothing. Make no mistake; doing nothing is making a decision. Endless postponements means someone else-a family member or the clinic—may get stuck on the horns of what is rightfully your dilemma.
Overwhelmingly, frozen embryos are intended for use by the couples that created them. But IVF centers around the country report that the sheer number in storage is putting a squeeze on space, with some embryos in residence for a decade or more. Increasingly, centers are attempting to contact patients who haven’t been active for several years. It can be an onerous and difficult task, and on occasion, pointless.
At CRMI, Dr. Veeck puts the abandonment rate at about 10%. That’s after three registered letters, using search agencies and making countless phone calls.
Not all clinics have the wherewithal or the intention of going to such lengths. But most clinics will not dispose of embryos without an explicit, legal go-ahead from patients.
For the most part, says Dr. Hoffman, “couples usually pop up out of nowhere” when they’re notified that unless they respond, the embryos will be discarded.
Contrary to all the hype, Dr. Hoffman notes there are “very few not spoken for. The government thinks there are huge numbers out there. But there aren’t a lot of abandoned embryos at all.”
In other words, the vast majority of us with excess embryos are left to wrestle with our personal convictions and moral codes.
What Gives Meaning
For some people, contributing their embryos to research in an effort to help others gives them a sense that their assisted reproductive efforts have lasting value. “It’s a way of giving back to medicine and it makes them feel good,” says Dr. Alper of Boston IVF.
For others non-viable thawing provides closure. “It’s interesting, but people are very relieved when their embryos are discarded,” observes Adele Kauffman, Ph.D., and program psychologist at Reproductive Science Center in Waltham and Boston. “Embryos in the freezer are unfinished business. Once it’s done, they feel they’ve come full circle.”
Still others, impelled by altruism, empathy, or religious beliefs to help other infertile people, want to offer their frozen fertilized eggs for transfer.
“Initially, I thought it would be the option everyone would choose,” says Dr. Veeck at CRMI. “But when they think that they might have offspring out there and not know them or how they’re going to be brought up, they usually reconsider.”
In a recently published article, Dr. Craig Syrop at the University of Iowa Hospitals and Clinics, notes that
Of 365 couples with embryos stored after two years, 12% “indicated a willingness to donate to other couples (was) nearly equal to the desire of couples to donate to research.” But, he finds, when faced with the “reality of clinic visits for counseling, STD testing, and informed consent before embryos are donated and utilized” interest wanes and research outstrips donation to others by nearly 2 to 1.
The Donation Drama
Embryo donation for transfer is a media magnet, drawing tremendous attention when some began referring to transfer donation as “embryo adoption.” It is not.
“Adoption is a specific legal framework with specific guidelines around parental rights and obligations and applies to only living children,” says Susan Crockin, a Boston area attorney specializing in reproductive matters. She calls donation for transfer a “positive, but limited” option. She notes that five states have laws on the books dealing with this form of embryo donation, but nowhere is it the legal equivalent of adoption.
While the federal government is on the cusp of launching public education campaign advocating “embryo adoption,” Crockin calls it a misnomer that may make people feel good but “glosses over the legal reality.” At a minimum she recommends a legal agreement between donor and recipient; and consider, in those states without an embryo donation law, that the recipients go to court to have themselves declared the parents of a resulting offspring to avert the risk of custodial claims by the genetic parents or the extended family.
However, things blur on the psychosocial front where, psychologists say, the adoption parallel is stronger.
Embryo donors and recipients should expect that resulting offspring will want information about their genealogy, their genetic makeup, and their biological parents. Donors must be prepared for the possibility of a knock on their door one day even if the transaction was strictly anonymous. As decades of experience with adoption have shown, kids will come searching. Furthermore, laws protecting anonymity are subject to change.
“We’re in uncharted territory here,” said Dr. Elaine Gordon, a Los Angeles psychologist. Dr. Gordon says she’s getting more inquiries about embryo donation for transfer but many go nowhere.
“They find it too complicated and overwhelming in terms of what’s required,” she observes. “If they’re going to do it right, does it mean engaging in a relationship with the recipient couple and do they want to participate in that?”
She suggests that “responsibly done” ovum donation might provide the best model, with both parties entering into a “contract detailing terms of contact, if any, and information disclosed and exchanged. If the two parties can come to a meeting of the minds, the exchange can take place, facilitated by psychological, medical and legal experts.”
Embryo Donation Programs
There are several embryo donation programs, including the Christian faith-based agency, Snowflakes, that promotes “adoption.” At the root, all the programs facilitate matching donors with potential recipients and work through the details of the exchange.
“We’re a private (non-sectarian) agency and we liaise between the recipient and the donor,” explains Eileen Dover, executive director of Genesis Family Services in Holly Pond, Alabama.
Recipients send in a $100 application fee, list their requirements and are put on a waiting list until the right match pops up. The total agency cost to recipients is $1,800 but they’re also responsible for shipping, donor medical testing, notary feels, and a flat $250 attorney fee. Donors, who also can specify requirements for a receiving family, fill in a standard questionnaire, including medical history. Genesis’ simple-language but comprehensive contract requires adherence to the ASRM guidelines, but the agency leaves that to the donor’s doctor.
While Genesis doesn’t require psychological counseling, the contract calls for recipients to pay for up to three sessions for the donor, if the donor chooses. Dover also says, “we ask recipients to get counseling as well, but that’s their responsibility.”
Genesis advocates closed donations but will go with client’s wishes for open ones.
“We try to encourage transferring four embryos,” says Dover. “If you have 10 embryos (eggs that are fertilized, frozen but haven’t started dividing yet), you may get four to six that live through the thawing process. If they’re blastocysts (5-day-old embryos), there’s a darn good chance they’re going to do well and I don’t think any physician would do more than two or three.”
In Fullerton, California, Snowflakes operates on the assumption that this is an adoption. “In our program, we focus on the end result which is the child. That’s the same in all adoptions,” says JoAnn Eiman, a Snowflakes spokesperson.
The Christian faith-based agency requires recipient families undergo a homestudy, a fundamental process in traditional adoption, but controversial in embryo donation for transfer. As Eiman explains it, about 20% of the homestudy is about child abuse and Department of Justice background checks. “The other 80% is preparing the parent for a non-genetically linked child,” she says. The agency does both closed and open donations, depending on the preferences of the parties.
Snowflakes fees to recipients are about $4,000 for the matching, legal contract, shipping, coordination, rematching if required and lifetime support.
Begun in 1997, the first Snowflakes baby was born in 1998. In 1999 there were a couple of matches but no births. But by 2002 there were a total of 18 babies born and this year, Snowflakes expects another 23.
Do donors who’ve gone this far change their minds? “Most don’t but it happens,” said Eiman. “Typically when the donor couple gets a profile on the adoptive family they say ‘Oh my goodness, this is real. They’re going to take them and raise them.’ When they get the packet that’s when it hits them.”
It’s a whole new world, agrees Dover at Genesis. “It remains to be seen whether (donors) really get that they’re going to have children out there. They say, ‘Yes, I understand.’ But what’s going to happen 20 years down the road? I think about that when I’m whiting out the records and I think someday someone might want to look at that.”
When It’s All Too Confusing
Okay. We’re all pretty clear that the “what is to be done” with extra frozen embryos is at best confusing. The American Fertility Association strongly urges that you weigh the following to help ease the strain:
Nobody has control over your embryos but you.
You are not obligated to stick with your first decision or your second or third. The no-turning-back point comes only after you’ve formally and legally relinquished ownership of your embryos.
Know that it is absolutely fine to wait as long as it takes for you to make the decision that feels right for you. No government, social or religious entity should force you into taking an action that, in your gut, you know is a personal mistake. Because you will have to live with this decision forever.
Donating to other couples is a real and generous alternative. The AFA recommends you thoroughly explore the legal, psychological and emotional implications and potential long-term ramifications. You must feel confident that you can deal with the possible outcomes down the road.
Thawing without intent to transfer is a perfectly reasonable option that most couples do choose, finding it provides the unexpected relief of closure. Yes, there may very well be grief and counseling or support that can serve you well.
We at The American Fertility Association will continue to report, write and provide you with as much information about this topic as we can. But, as one of the leading patient advocate groups, The AFA is always available to you, to answer questions, provide support and referrals. Please call our toll-free number (888) 917-3777. It always helps to talk with those who’ve been through it, too. ”
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