Disclosure Issues From the Perspective of the Embryo Donor
September 21st, 2011 | 
Author: This is the second of a five-part series by Dr. Craig R. Sweet examining the complex decision-making surrounding the disclosure of the genetic origins of embryo donor offspring to family, friends and the children themselves.
If embryo donors are kind and generous enough to donate their unused frozen embryos to patients in need, their next important decision revolves around whether they want to donate anonymously or if they would like to create some type of relationship with the recipients and their potential offspring. At EDI we want to give donors the widest range of choices, so we offer Anonymous, Approved and Open Embryo Donation procedures.
We do not have accurate national statistics about which embryo donation procedure is chosen most often. Some matching 
organizations only deal with open procedures while many reproductive facilities only offer anonymous arrangements. Embryo donors, therefore, often have to search for the facility that will cater to their needs.
Is Adoption the Best Model To Follow?
I have written about why I believe the term “embryo adoption” should not be used in the context of embryo donation and the American for Reproductive Medicine has a similar perspective. Regardless of our beliefs, some donors feel a responsibility to the embryos that includes making certain the embryos are donated to a loving and safe home. These donors feel the process is similar to adoption.
Over the years, there has been a trend in traditional adoption towards providing adopted offspring with information about their genetic parents after they turn 18 years of age. This trend towards disclosure is being used to encourage more open procedures in embryo donation. But there is a major difference between the two forms of family building: embryo donation offspring do not have to be told of their origins. Because the recipient carries and delivers the child, it is completely possible to keep the “non-genetic” relationship a secret from family, friends and the child. The donor offspring-recipient relationship begins differently than adoption from legal, emotional, social and practical perspectives.
Embryo donors and the genetic parents of a newborn are able to stipulate what kind of recipient will be given their embryos and newborn. While they will state they are doing what is best for the child, some may argue they are doing what is best for themselves. In the case of child neglect/abuse/abandonment, the courts and case workers will decide what they feel is best for the living child. In this situation, the needs of the child take priority over the perceived needs of the genetic parents. Embryo donation always focuses on the needs of the parents while adoption may focus on the needs of the child.
Are Embryo Recipient Families and Offspring Happy?
Embryo donors may worry about the kind of home in which the potential children of their donated embryos will be raised. Results from recent research can help mitigate these concerns since it appears that embryo donation families are more child-centered than adoptive and other IVF families (MacCallum F, et al. 2007 & 2008). This may be due in part to the recipients’ older age and maturity compared to their younger IVF and adoptive parents. Given their strenuous attempts to conceive, the embryo recipients seem to be extraordinarily appreciative of their gift, making their homes more child-centered and the children seem to be well attended.
Unlike adoption, it is doubtful that the offspring of embryo donation will have the “history of rejection” to resolve like adopted children might have after being separated from their birth parents (Widdows H, et al. 2002). Although studies are lacking, this hurtle doesn’t seem to exist for children created from embryo donation. Indeed, though the donors felt their own family building was complete, they also felt strongly about giving their unused embryos a chance at life as well as wanting to “pay it forward” to deserving recipients. Families created through embryo donation are a product of a loving gift and not formed from rejection.
It would, therefore, appear that the offspring created through embryo donation do not have to have a relationship with the embryo donors to be well adjusted. While it may be desired and perhaps even preferred by offspring, it remains the embryo donor’s choice at this early stage of the game.
What Options Are Readily Available?
I believe that in most Open Embryo Donations, the child will be told of their origins. In fact, contracts may stipulate that the donors have the right to contact the child at a later date or may provide a mechanism for the child to be able to contact the donor at a certain age. An Open Embryo Donation process more closely mirrors an adoption process.
For Anonymous Embryo Donation, EDI is considering Open-Identity, an intermediate option allowing embryo donor offspring access to medical and other types of information after they reach a specified age. A number of steps are needed for open-identity to work:
- Embryo donors must agree to an anonymous process with the option of open-identity at a later date.
- The embryo recipients are not mandated to disclose, so only those offspring who are told may seek contact with the donors.
- If the embryo donor offspring desire contact, they will notify the clinic that performed the embryo donation procedure to access identifying information.
- It is essential that the embryo donors maintain contact with the embryo donation facility so that up-to-date identifying information is available.
I find it curious that most open-identity procedures, such as in adoption, identifying information is only provided at or beyond the age of 18. I can’t help but wonder if the child would be better served by having contact earlier, especially if it is truly desired by all parties. If the donors and recipients agree, why not initiate contact earlier, such as in the formative years? The respondents to our first poll seem to agree with the vast majority favoring an open-identity disclosure before the age of 18.
We will continue this discussion, on disclosure issues from the perspective of the embryo donor tomorrow and also launch the second of our three surveys. The reference list will also be posted with this second half tomorrow. Stay tuned!
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Tags: 2 Responses to “Disclosure Issues From the Perspective of the Embryo Donor”
Dear Dr. Sweet:
Have you ever heard of the Donor Sibling Registry? If not, you can locate their website at https://www.donorsiblingregistry.com/. Do you have an opinion as to why that website was created and is actively searched on a daily basis? It’s because the majority of donor conceived individuals eventually find that they do care about their genetic origins and have a need and desire to connect with genetic family members. Whether you realize it or not, you and your company are playing a bit of “Big Brother” in facilitating the donation of all these embryos. And don’t get me wrong, I love that your program exists and that people are willing to donate the most precious gift of all, but I don’t agree with advocating and encouraging “anonymous” donations.
In this information age we live in, I can only imagine what content will be available and searchable in the next twenty years. I highly doubt it will be possible to keep anonymous embryo donations truly anonymous.
Semi-open and open arrangements need not be perceived as “scary” or “unnecessary.” When someone, such as yourself, who has a lot of influence in the area of Embryo Donation writes “Unlike adoption, it is doubtful that the offspring of embryo donation will have the “history of rejection” to resolve like adopted children might have after being separated from their birth parents (Widdows H, et al. 2002)”, I would encourage you to make sure that you can fully back up that statement. Let’s give it about 15 -20 years to see what these donor conceived children have to say about their facilitated donations.
But then again, it’s not about children…as you wrote…it’s only about the parents.
Yes, I have certainly heard of the DSR. In fact, I reference a number of articles attributed to their website and existence. There is a great deal of passion on this topic and reactions are expected to run deep, as can be perceived by your comments.
I don’t advocate anonymous donations. I do suggest, however, the decisions be carefully made. The inclusive statement that all donations should all be open is not any more accurate than the statement that they should all be anonymous. The problem is that many friends, family members and religions do not act kindly to egg/sperm/embryo donation. To disclose in certain situations will result in harm to the recipients and potentially the offspring. In addition, there are really no long-term studies regarding disclosure in the embryo donation world. While donor sperm/egg and embryo donations have many issues in common, they are not necessarily the same and there are subtle differences may separate embryo donation from other types of donation. I urge caution when we are uncertain of the consequences of our actions.
The people on the DSR are a particular subset of people. That does not make their comments irrelevant. On the contrary, they are a very important perspective. Understand, however, that children that are not told or those that are aware but not seeking information or contact with half-siblings or the original donors are not represented on this site.
If disclosure is mandated, as is suggested by some, the number of embryos donated will fall tremendously. It is hard enough now to encourage patients to make the amazing decision to donate their embryos. All they need is another reason why not to do it and we will inadvertently increase the number of embryos abandoned or discarded. Please take this concern seriously as it would be a terrible unintended consequence of mandated disclosure.
Please be patient as there is more blog to be released. Next week, I write on the topic of disclosure from the perspective of the embryo donor offspring. Finally, the week after, there will be a summary regarding disclosure from the perspective of the embryo donor, recipient and the offspring as well as the surveys we will have collected. Please do not pass judgement prematurely before you have had a chance to digest all material. I welcome respectful discourse on the topic and look forward to comments from from you and others on the topic. Thank you for taking the time to explain your important point of view.