Are Open Embryo Donation Procedures Better Than Anonymous?
Gamete donation of sperm, eggs or embryos has been occurring for quite some time. Sperm donation probably occurred as far back as 1884 in the US (Wikipedia, 2011). Embryo donation was first reported in Australia in 1983 using both fresh and frozen embryos. (Trounson A, Mohr L, 1983). Egg donation probably first took place in the U.S. in 1984 around the same time as the first embryo donation procedure (Blakeslee S, 1984).
Certainly in the early years of sperm/egg/embryo donation, the procedures were almost always done anonymously. Designated donations also took place using family and friends but they were the exception rather than the rule. Having donors and recipients meet was not really an option in the past.
Is non-anonymous sperm/egg/embryo donation becoming more common?
Over the years, there has been movement towards non-anonymous or known donations. Countries such as Sweden, Norway, Netherlands, Great Britain, Switzerland, Australia and New Zealand only allow non-anonymous sperm donations. In a future blog, we will cover some of the consequences that occur when countries completely move from anonymous to non-anonymous donation procedures. At least in the U.S., there is a choice, though Washington State recently passed legislation that makes it more difficult for anonymous sperm and egg donation to take place. I will discuss this legislation and topic in a future blog since this is an important and concerning development. An increasing number of donor sperm and donor egg banks offer non-anonymous donation, although, with rare exceptions, this remains a minority of the procedures performed in the U.S. (personal communication).
Does EDI offer non-anonymous embryo donation?
At Embryo Donation International, we offer Open Embryo Donation where the donors and recipients have the ability to communicate, meet and establish a relationship. Other facilities tend to call it “embryo adoption”, a term we are at odds with (click here for more information), where there is an attempt to foster relationships. Interestingly, at EDI, this is rarely requested although we feel it appropriate to offer such an alternative.
If embryo donors & recipients meet, what is the outcome?
If families do connect, there are a number of relationships that need to be considered. The first involves the donor(s) and the recipient(s). No one knows if these relationships will last. Romanticizing the idea of everyone being one happy family may be misguided. There are certainly examples where friendships have developed, such as the families profiled this Good Housekeeping article, but the number of relationships that don’t flourish are simply unknown. We all have to go through so many acquaintances to eventually find our true friends, so it remains uncertain if these initially awkward relationships will last beyond the transfer process. Long-term studies are lacking.
The second relationship to be considered would be with the resulting donor offspring and the donor(s). In an Open Embryo Donation procedure, the child will not only know the genetic and family history in detail but they will most likely know the names of the donor(s). The likelihood of this child trying to eventually connect with the donors is great. While there is a genetic bond, it remains uncertain if the relationship will always be welcome or beneficial. Certainly in the adoption world, adoptees that eventually find their family are not always rewarded with utter acceptance and may experience rejection, as they see it, a second time. Once again, long-term studies are lacking about the effects of an open embryo donation process with regards to the potential relationships between the donors and the donor offspring.
Lastly, there are the potential relationships between the siblings created when the donor has children of their own or donates to other recipients with offspring created. These children share a solid genetic bond and may feel rewarded in forming a relationship with their genetic brothers and sisters. Only careful, long-term and unbiased research will be able to identify the outcomes of such relationships. My best estimate is that these relationships may be sustainable but what will happen if the donor offspring are not fully accepted by the donors or the donors and recipients are no longer close?
Will my doctor be able to help me with my decision to have an open embryo donation?
So, would you want to meet your donor? Would you want to meet your recipient? It would be ideal if your clinician could clearly guide you as to the expected outcome of an open process. In reality, we are also diving into the thorny question regarding disclosure of one’s origins to embryo donor offspring, something that I will be touching upon in the months to come. For now, however, I suggest a point of caution. The world of embryo donation is simply not the same as the world of adoption and extrapolating one to the other is not without risk.
The issues we are discussing involve currently unknown long-term consequences and we need to be careful, thoughtful and unbiased in recommending one embryo donation procedure over another. For now, I believe it is a very personal decision that only embryo donors and recipients can make based on how they currently feel and what they believe will happen in the future.
I hope that we physicians deeply involved in the world of embryo donation will better be able to discuss the long-term advantages and disadvantages of open vs. anonymous procedures, but for now, the patients will simply have to guide us.
References:
“Sperm Donation.” Wikipedia, The Free Encyclopedia. Wikimedia Foundation, Inc., 23 July 2011. Web. 24 July 2011. http://en.wikipedia.org/wiki/Sperm_donation.
Trounson A, Mohr L. Human pregnancy following cryopreservation, thawing and transfer of an eight-cell embryo. Nature 1983;305:707-9.
Blakeslee, Sandra (1984-02-04). “Infertile Woman Has Baby Through Embryo Transfer”. The New York Times. Retrieved 2009-11-05.
Hi Dr. Sweet – My personal thoughts on this have changed over the years dramatically. I used to think that being anonymous was best. However, I wasn’t seeing the forest through the trees — (ie-what was best for potential children, I was only thinking about my own comfort level). Much time has passed since I underwent my egg donation cycle, and while I didn’t receive donated embryos, and cycled with fresh eggs my cycle was still anonymous and to this day I don’t know who my egg donor is. It’s still missing information I can’t share with my child because the reality is the only information we have about her is what’s on a profile.
I will be the first to admit to you and the public that when I embarked upon egg donation I was short sided about what was going to happen or could happen 20 years down the road. I was concerned about my comfort level, how incredibly uncomfortable I’d be if I knew my egg donor back then. I wasn’t even thinking about any children I’d have or their comfort level.
Pretty selfish yes? Very common with intended parents. We want children so badly, that we don’t want to even fathom where they come from, we certainly don’t want to share them with anyone, and so it feels safer being anonymous sometimes.
The fact of the matter is — half of their genetics came from someone else. Those genetics are part of who our children are, those genetic make them the incredible and amazing children we have fallen in love with and are raising. It’s only fair to them to know their origins. It would be like you and I walking around not knowing who we were or what made us up.
It took me a long time to get to this point.
So yes, I think with egg donation, fresh, frozen, and with embryo donation it’s positive, and healthy to have open or directed donations. In regards to embryo donation the potential for full siblings is greater. And while we recognize that it takes a village to raise a child and genetics doesn’t always make a family, we need to be respectful and cognizant that especially with embryo donation siblings do exist and they do have a right to know they are out there and where they are.
Thanks for all you do.
Marna Gatlin
Founder, Parents Via Egg Donation
In my review of the literature, about half of the women/couples who used anonymous egg donation have told or intend to tell their children. While there are few studies, about 1/3rd of the patients who undergo embryo donation have told or intend to tell their children about their origins. Perhaps as the children grow, the number of parents that tell their children will increase. For those parents that do not want to share the experience, an open process is not what they desire.
While the number is slowly changing, the number of donors that want contact 18+ years from now are still a minority as are the number of recipients who desire knowledge and a relationship with the donor. I do suspect that if contact is welcome by the donor, the child will probably benefit. If contact is not desired, however, the child could be harmed. We read of the stories of connection and joy but those that are rejected or the relationship becomes dysfunctional, the individuals are silent. We also believe that open or directed embryo donations have some strengths but they also have potential weaknesses. I still have concerns that open procedures may not always live happily ever after.
You write of a right the child has to know that they have siblings. I am not sure if it is really a right, as we commonly define it in our legal arena, as much as it would be a strong desire. There are so many true legal rights at play into this discussion. The right of privacy by the donors and recipients come to mind. It becomes a complicated issue indeed when the presumed rights of one trumps the true legal rights of another. For now, this remains a balancing act.
I am growing increasingly concerned that there are well-meaning agendas out there that want to forbid anonymity with all donation services. As has been clearly seen in other countries, access to donors drops when when such legislation occurs. This country was founded on choice and choice, I feel, is what needs to be offered. Legislated limits will always result in unintended consequences and sometimes these consequences become very significant. For example, if anonymity were forbidden in embryo donation, I am utterly convinced that more embryos would be discarded or abandoned. It is already such a difficult decision to donate one’s embryos. All the patients need is another reason why not to donate their embryos and some recipient families will never be created. With half of all cryopreserved embryos not used for reproduction, we are struggling to slowly increase the number donated while decreasing the number discarded and abandoned. The forced loss of anonymity will result in huge unintended consequences in the world of embryo donation.
Until we know more from many different people under many different situations, I still feel the best option is to offer both anonymous and open/designated donations to fulfill the current desires of the recipients who are making the best choice they can right now, just as you did in the past. Perhaps they will come to the same conclusion as you have. Perhaps we physicians will have an improved understanding of what lies ahead for recipients, donors and the offspring they create through a form of symbiosis. I look forward to that day.
Thank you for taking the time to read the blog and responding is such an eloquent manner. I’m sure we will have more to share in the future with our readers and each other.
Craig R. Sweet, M.D.
Founder, Medical & Practice Director
Embryo Donation International
I am hopeful that prospective parents and donors will continue to enjoy the option of either anonymous or open donation. From an attorney’s perspective, we hope that parties of like mind and interest become matched and further, from that perspective, is the interest that all parties are making the most informed decision before pursuing collaborative reproduction. I recommend PVED as well as other resources to all of my clients, I encourage donors to access public statements made by Marna Gatlin and other colleagues who can share with the donor community what we, as professionals, have learned from our many years in this field….and we have learned much by listening to previous recipients of donor gametes as well as from both sperm donor conceived adults and the adoption community.
I also think it is important to note that while parties may pursue “anonymous” donation, the recipient family does not have to be as disconnected from their donor as Marna has experienced in her family building (as described in her above post). With the right processes/practices in place, there can be a significant amount of information available for the child re: medical, genetic and extensive social history about the donor. A vast majority of my colleagues write, as standard practice, into their Anonymous Embryo or Egg Donor/Recipient Agreement language that requires the donor to be reachable (through a 3rd party, to maintain anonymity) in the case of a medical crisis and also puts the donor on notice that the recipient family may be in touch with donor (again, through a 3rd party) for social reasons or matters of, perhaps, curiosity. Many donor contracts, anonymous or known, require the parents to inform the donor (through a 3rd party) if there is a pregnancy. This is done out of consideration for the genetic siblings that may result from a donor having participated in multiple donations.
Lastly, with respect to a recent British Columbia ruling as well as legislation in Washington State, we see the issue of the donor conceived child’s access to medical and genetic history being made a priority. Many have interpreted both that Canadian court ruling as well as the Washington legislation as calling for a ban on donor anonymity. Actually, not only can donors opt out of identity release but really, what seems to be the focus of those attempting to regulate collaborative reproduction is the interest that the donor conceived child have access to family and genetic history. I am believe, as do many of my colleagues, that this can be accomplished while still maintaining donor anonymity.
I applaud you, Dr. Sweet and Embryo Donation International for engaging colleagues in these discussions and for continuing to offer both hopeful parents as well as donors options for participating in collaborative reproduction.
Dr. Sweet – Thank you for your thoughtful response. I don’t feel that anonymous egg or embryo donation should be banned. However, I will say that it’s my hope that anyone who embarks upon or participates in anonymous egg donation or embryo donation do the right thing by their children and have open and honest conversations about their children’s origins. Maybe not a legal right, but a basic right.
You are correct, it’s very complicated, and the balancing act we all attempt to maintain is sometimes difficult.
Back when I was a donor egg IVF patient I truly was disconnected from my donor because that’s just the way it was done. You only had directed egg donation if your egg donor was a close friend or a family member.
I am not presuming that anyone’s rights trump another individuals rights. What I am saying at the end of the day the most important thing we all need to keep in mind and focus on is the well being of children we bring into the world.
It’s easy to play God in this field, and the reality is these kids didn’t sign up for this. I am being 100% honest that when I first began my DE journey I really didn’t think down the road to my child’s well being. All I could focus on was becoming a mother. It was really tough to swallow, but being completely honest with myself was more important than being right or soothing my own feelings.
Thank you Dr. Sweet for all you do, and I like Amy applaud you and EDI for engaging colleagues in these discussions and for continuing to offer both hopeful parents as well as donors options for participating in collaborative reproduction.