Every year, thousands of people in the U.S. stare down the barrel of infertility. They enter treatment full of hope—and anxiety—that medicine will help overcome their reproductive difficulties. The last thing anyone anticipates at the beginning of this journey toward Assisted Reproductive Technologies (ART) is that there will be surplus embryos at the end. Yet that’s exactly what has happened.
Sound familiar? Perhaps because the medical interventions were successful and you had the children you wanted. Or perhaps the procedures didn’t work for you. At either end of the ART outcome spectrum, there are former patients, like you, wrestling with the emotionally-laden decision of what to do with the cryogenically preserved embryos they gave so much to create but will never use.
It’s a complex choice, as individual as DNA. It’s one that grows from a constellation of personal experience, philosophy, religion, and social conscience. For the ART patients whose beliefs or convictions make other options untenable, embryo donation for transfer to other infertile couples may be the solution. It is a generous, life-affirming alternative that opens up the possibility of opportunities for parenthood to others struggling against reproductive disorders.
Embryo donation, however, is largely uncharted psychological, legal and social territory. Before offering fertilized eggs to others, it’s critical that would-be donors enter into this process with a clear head. Donors must be armed with the best advice and guidance they can get from doctors, lawyers, psychological counselors and, perhaps, people who’ve already made the choice to donate.
Within the pages of this brochure, you’ll find a guide to the information you’ll need to consider and the questions you and your partner need to ask if and when you contemplate donating embryos for transfer.
The Underlying Meaning
Embryo donation means that one couple gives to another the early-stage cell clusters that result from the union of their sperm and eggs. These 3-to-5 day old embryos are transferred to the uterus of the recipient woman, potentially allowing her to experience pregnancy. Both donors and recipients understand that the recipient and her partner will bring up—parent—any children that may be born.
DONORS SHOULD EXPECT THAT THE CHILD MIGHT EVENTUALLY WANT INFORMATION ABOUT HIS OR HER GENEALOGY AND GENETIC MAKEUP, BIOLOGICAL PARENTS, AND BROTHERS OR SISTERS…
Although the term “embryo adoption” is finding its way into common parlance, no state allows the adoption of a child before birth. But there are some parallels to adoption if a successful transfer culminates in a live birth.
Donors will have a genetic offspring out in the world and their children—should they have any—will have a genetic sibling. Donors should expect that the child might eventually want information about his or her genealogy and genetic makeup, biological parents, and brothers or sisters. You must be prepared for the possibility that that boy or girl may one day seek you out even if the transaction, at the time of donation, was strictly anonymous. As decades of experience with adoption have shown, children will come searching.
Consider, too, that you may be left wondering if your embryos ever did produce a child and if so, whether that boy or girl is strong, healthy and happy. Before relinquishing embryos to another family, you need to weigh the possible impact of that child on your life, the lives of your own children, and the impact for any children born of the donation.
A Matter of Mind: The Psychological Issues
As long as embryos are suspended, protected in liquid nitrogen, the connection to the ART process remains active. Donation is a decisive action that gives a couple closure by writing the final chapter of that part of their lives. At the same time, making this generous offering is likely to raise complicated and conflicting emotional responses. The insights and experience of a professional counselor or patient advocate can help you through a tough decision-making process. You must scrupulously examine your motivations and be able to rest easy with your choice, now and 20 years from now.
DONORS DONATION IS A DECISIVE ACTION THAT GIVES A COUPLE CLOSURE BY WRITING THE FINAL CHAPTER OF THAT PART OF THEIR LIVES. AT THE SAME TIME, MAKING THIS GENEROUS OFFERING IS LIKELY TO RAISE COMPLICATED CONFLICTING EMOTIONAL AND RESPONSES.
There should be no surprises when it comes to what will be expected when you offer up your embryos. Chances are you’ve undergone screening and testing for STDs and other infectious diseases at the time you began assisted reproduction. But you may be asked to redo those checks before your embryos are actually transferred. You will also have to sign a detailed informed consent form that spells out the terms of your donation.
Studies have shown that while many couples take the initial step towards donation, impelled by altruism, empathy, or religious beliefs to help other infertile people, an overwhelming number change their minds. One article noted that of 365 couples with embryos stored after two years, 12% “indicated a willingness to donate to other couples nearly equal to the desire of couples to donate to research.” But when faced with the “reality of clinic visits for counseling, STD testing, and informed consent before embryos are donated and utilized,” the study found interest waned with research outstripping donation to others by 2-to-1.
When it Works
In a situation very similar to adoption, when a donation accomplishes what it is intended to, you will have a genetic child in the world growing up apart from you. If you have children, they will have a full sibling. It’s understandable that you may develop an emotional attachment to the child you don’t know, but who may bear an uncanny resemblance to your partner’s father, or have your eyes and innate musicality, or your daughter’s smile and athleticism. It’s also understandable that you may worry about a potential child growing up thousands of miles away, in economic or cultural circumstances different from those you might provide.
Remember that recipients, too, will develop a strong emotional attachment to the child during gestation. They have also struggled to become pregnant. You must recognize and honor that bond because you have given the recipients a gift that can’t be retracted easily. While no one becomes a parent until the birth, trying to stake a claim on a child that results from your donated embryo could force you into a wrenching, expensive and, highly public court fight. Because the laws vary from state to state, the resolution of potential disputes is speculative.
There are other permutations to ponder. While anecdotal evidence and interviews with fertility centers around the country indicate the policy at most embryo donation programs is to maintain the anonymity of the donor, some couples desire an “open” donation. It may be because the donors want to have knowledge of and perhaps maintain contact with a potential child. Or the couples may be known or even related to each other. In that case, both couples should set boundaries and abide by them; this is usually done by formalizing their understanding with a written agreement. They should discuss the extent and limits of the relationship of the donating couple to the child, and agree on the reciprocal obligations of recipient and donating parties. One way to minimize the overwhelming complexity may be to follow the model of the “responsibly done” ovum donation. In that case, the donors and recipients enter into a contract detailing terms of contact, if any, and information disclosed and exchanged. If there is meeting of the minds, the embryo donation takes place facilitated by psychological, medical and legal experts.
YOU MUST BE CONFIDENT THAT YOU ARE ABSOLUTELY COMFORTABLE WITH YOUR DECISION. BOTH PARTNERS MUST BE ON THE SAME PAGE.
Completing this kind of donation with minimal disruption requires an honest assessment of responses to everyconceivable contingency. If you feel conflicted or ambivalent about giving up your embryo, acknowledge it. Guilt should never be a motivating factor. If you feel unable to follow through with your altruistically - intended deed, don’t. And talk to a lawyer to make sure you understand the legalities. . You must be confident that you are absolutely comfortable with your decision. Both partners must be on the same page. It won’t work if one half of the donor couple has strong feelings in one direction, while the other has an equally strong but diametrically opposite take. That makes mutual candor essential. If either of you has doubts or misgivings about the donation, step back, take the time to work them out. The time is now, not a decade or two in the future.
Talking things through with a support group, a specially trained mental health professional or someone who’s already been down this road can help you clarify your thoughts. You may find your tentativeness disappears and you’re confirmed in your decision to donate. You may discover that you’re simply not ready to move forward, that you need more time. Or you may have to confront the fact that you are not ready to make a donation.
When it Doesn’t
The other thing to think over is that there’s a good chance that the donated embryos will never result in a live birth.
ANOTHER COMPLEXITY: SOME EMBRYO DONATION PROGRAMS REQUIRE RECIPIENTS TO MIX EMBRYOS IN THE TRANSFER TO INCREASE THE CHANCES OF A PREGNANCY.
The odds are stacked against them. In Vitro Fertilization has an overall success rate of 20% per transfer. Likely the donating couple has used the best embryos—those most likely to develop—in their own reproductive attempts. Would an unsuccessful transfer feel like failure? Would there be a fresh round of loss and grief?
Another complexity: some embryo donation programs require recipients to mix embryos in the transfer to increase the chances of a pregnancy. You must ask yourself how you would feel knowing that someone to whom you gave your embryos might indeed carry a baby to term but it may or may not be yours. Can you endure the uncertainty?
It’s critical to anticipate and resolve what may seem like incomprehensible and imponderable matters. For the donation to meet your expectations, for it to be the expression of faith or moral conviction you hope it to be, you and your partner must be secure with all the ramifications of the decision. You might find that counseling by a mental health professional is one of the most beneficial things you do. Indeed, the American Society of Reproductive Medicine and the Society for Assisted Reproductive Technology, the field’s two professional organizations, strongly recommend that patients consult with a specially trained social worker, family therapist or psychologist who can help you find your way through the dizzying maze of thought and emotion. It’s also important to consult a lawyer to get help understanding the papers you will be signing.
Body of Evidence: The Medical Aspect
Once you’ve left treatment, the most arduous part of the assisted reproductive odyssey is in the past. Still, donors will have to undergo some minor medical testing and assessment.
Previously, the Food and Drug Administration regulations exempted sexually intimate partners engaged in reproductive treatment, from infectious disease testing prior to the creation of their embryos, which were intended for the couple’s own use. Recently, the FDA expanded this exemption, which now permits couples who were not originally screened for infectious diseases, to donate their cryopreserved embryos to other couples. The regulations do suggest that attempts to test these donor couples should be made before the embryos are transferred to the recipient, but, when testing is not possible, the recipient should at least be advised of the potential communicable disease risks. Given that FDA regulations may change, you should be sure to understand what screening and testing requirements are in effect at the time of your donation.
Although it might seem trivial, donors are often shocked by the profound emotional turmoil these testing and screening procedures stir. Often it is the first time that the implications of the decision move from the abstract to the tangible. Donors come face-to-face with the real possibility that someone else could raise their genetic offspring. According to donor program administrators interviewed over the last two years, it is a pivotal moment that leaves many potential donors reconsidering the move.
Some agencies will include the testing issue in their donor contracts. One agency contract requires that donors be tested for infectious diseases six months after making the decision to donate; in the meantime the embryos are quarantined.
Once the donors have decided to move forward after testing, the recipients will either pay to ship the preserved embryos to a clinic near them, or will travel to where the embryos are stored for the transfer.
The Paper Trail: The Legal Issues
Once a couple decides to donate, both partners will sign a new, specially tailored informed consent document. However, couples can change their minds right up until the time of actual transfer to the recipient woman’s uterus.
A donating couple could have a change of heart sometime during gestation and challenge the donation agreement. Such a contest would ultimately be adjudicated by the court, but it’s impossible to speculate what the outcome would be. Such a dispute may result in highly publicized media attention.
COUPLES CAN CHANGE THEIR MINDS RIGHT UP UNTIL THE TIME OF ACTUAL TRANSFER TO THE RECIPIENT WOMAN’S
Donation programs will make sure you understand what you are doing. “(Our) contract states in almost every other paragraph that the donors are giving up all parental rights,” emphasized one embryo donation agency’s executive director. According to the spokeswoman for another private agency, the donor contract they’ve devised states that embryos are relinquished before UTERUS. being shipped to a new clinic. In addition, there’s a separate renewable “relinquishment” document that allows donor families to stay involved with embryos that were donated but not used. “Let’s say the recipient family got 20 embryos from the genetic family and all of a sudden recipients say ‘we have triplets’ and there are 10 embryos remaining, the responsibility for the decision about what to do goes back to the (donors),” she said.
At a minimum, most clinic-based programs and independent agencies ensure that both the donor and the recipient sign contracts that stipulate their respective rights, commitments, restrictions and liabilities.
A CHILD CANNOT BE ADOPTED BEFORE ITS BIRTH. SOME STATES HAVE TISSUE DONATION, WHICH DIFFERENT COURTS HAVE LIKENED TO A GIFT, AND ADOPTION.
However, you may want some extra insurance in the form of a contract designed to your particular desires and needs. You may want to stipulate and clarify protections against any possible claims by the recipients (e.g., the child resulting from your embryo is born with a genetic disease or disorder). If you’re giving your embryos to someone you know or it’s an “open” donation, consider having an attorney to draft a legal document that sets forth the potential relationships you’ve agreed to with the recipient family. A child cannot be adopted before its birth. Some states have laws dealing with embryo donation, which different courts have likened to tissue donation, a gift, and adoption. (In 2005, among those that do are Florida, Oklahoma, Texas, Virginia and North Dakota.) Yet embryo donation, precisely because if successful will result in a new person, occupies its own singular place. As a result, the law in this area is extremely unsettled.
No Money, No Worries: The Costs
If all goes smoothly, you don’t have to spend a cent. All medical costs are borne by the recipient. Most embryo donor programs provide both recipients and donors with basic informed consent agreements making clear that the donor gives up any claim to a child that might result from the transfer. The only out-of-pocket expenses you may incur are those for additional legal counsel that you elect to pursue.
The Long View
The very newness of embryo donation means that there’s little information on the long-term outcomes. Will the impact on donor and recipient families as well as the children be akin to adoption? Will it more resemble gamete donation? Or is it in a class by itself, with emotional and psychological consequences no one yet understands?
It remains to be seen whether donors really get that, someday, they may have children out there, remarks the director of a private embryo donation agency. “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.”
THE GIVING KIND
As ART patients deal with their legacy, the embryo donation arena will take on a more solid shape. But even in its early days, it’s clear that this gift—a chance at a family—that some people bestow on others can be a wonderful choice. It requires unwavering honesty, close attention and sensitivity to the donors, to the beneficiaries of their remarkable gift and to the children who might be.
This brochure was produced and is being disseminated with funding from the U.S. Department of Health and Human Services under Grant 1 EAA OP002103-01. The statements expressed are those of the authors and Path2Parenthood and do not necessarily reflect the views of the Department.
Path2Parenthood wishes to acknowledge and thank the American Society of Reproductive Medicine (ASRM), The Society of Assisted Reproductive Technology (SART), and Boston IVF for their input, guidance and support for reviewing this brochure.