As discussed in a previous blog, the embryo donor really sets the stage regarding disclosure. They either can choose Anonymous procedures, perhaps with the option of Open-Identity at some later date, or an Open Embryo Donation process. Let’s assume that an Open Embryo Donation process will legally stipulate the issue of disclosure. If Anonymous, however, it will be up to the embryo recipient to decide if they are going to tell friends, relatives or the child themselves.

What Exactly Are Recipients Disclosing?

The American Society for Reproductive Medicine (ASRM) believes there are two stages of disclosure to the offspring. The first involves the decision to tell the child and the second involves how much information to disclose (Ethics Committee, 2004). In disclosure to the child, the parents have the option to provide identifying or non-identifying information, when available. Recipients tend to try to disclose less rather than more, if they decide to disclose at all (MacCallum F. 2009).

Are Some Recipients More Likely to Disclose?

The makeup of the embryo recipient parent or parents will help dictate the probability of disclosure. Recipients who are single or are part of same sex couples will be more likely to disclose since the circumstances of their children’s conception will ultimately become a topic of conversation. However, heterosexual couples are the least likely to disclose.

Why Don’t Embryo Donation Recipients Disclose?

The following were the most common reasons why egg/sperm/embryo recipients do not disclose (MacCallum F, et al. 2007, Jadva V, et al. 2009 & Mahlstedt PP, et al. 2010):

• Desire to protect the child
• Fear of the offspring rejecting the nongenetic parents
• Felt there was no need for disclosure
• Were simply uncertain about how to tell the child

From the embryo recipient’s perspective, they have the right to privacy and the right to choose whether to disclose. Disclosure will result in the broadcasting of the recipient’s infertility issues, which they may have kept quite private (Klock SC. 1997). Embryo recipient parents and their children may be potentially be damaged by other people’s negative reactions, social stigma and the resulting isolation (Shehab D, et al. 2008). Let’s face it: there indeed might be a lack of societal approval of offspring who originated from donor material. Many people are judgmental regarding embryo donation, especially in cultures and religions that emphasize genetic inheritance.

While some couples undergoing egg/sperm donor conception immediately agreed with the disclosure concern, at least half of the partners were not in agreement (Shehab D, et al. 2008). In disclosing heterosexual couples, women were more in favor of disclosure with men more often deferring to their wives to make the decision. In non-disclosing couples, men usually preferred nondisclosure and women tended to defer to their husbands. Conflicting advice from family and friends seemed to make the decision more difficult.

While most embryo donation recipient couples agree on the disclosure or nondisclosure decision, it is interesting to note that fathers (56%, 9/16) were more likely to not want to disclose than mothers.(43%, 9/21). It was hypothesized that fathers may not have recalled as much about the embryo donors, were not as skilled as the mothers in communicating with the child or were simply more protective than the mothers (MacCallum F. 2009).

What Do We Know About the Frequency of Disclosure In Egg, Sperm and Embryo Donation?

How often disclosure occurs in the world of embryo donation is uncertain, but there is a growing body of data suggesting that only a minority of the children are told. In an English study of 17 embryo donation families with donor offspring who were five to nine years old, only 18% of the recipient parents had told their children, 24% planned on telling 12% were undecided and 47% stated they would not tell (MacCallum F. et al. 2008). The reality is that many of those who planned on telling or were undecided may decide against disclosure as the child ages and enters the more difficult years of adolescence. This appears to be different than other donor procedures where 46% of donor sperm insemination parents and 56% of egg donation parents (averaging to about 50%) planned to disclose (Golombok S, et al. 2004).

Since both parents lack a genetic link to the child in embryo donation, they may be even more private about embryo donation than other types of third-party conception families. While adoptive parents almost universally disclose (100% in this Golomok’s study),. embryo recipients carry and deliver the child, so it is far easier for non-disclosure to take place.

Would Consultation With a Mental Health Professional be Helpful?

Mental health professionals, who often rely on adoption literature and experience, almost unanimously encourage disclosure whereas physicians are commonly more neutral. Parents who have used donor material feel the decision to disclose is private and highly personal and should be left to the discretion of the individual families rather than regulated in any way (Shehab D, et al. 2008). Many patients resent direct suggestions that they disclose and far prefer a discussion that examines their own needs and perspectives (Klock SC, 1997). In reality, it is really not appropriate to give a uniform recommendation that does not account for the personal, ethical and religious views of the embryo recipients.

I believe that unbiased psychological counseling early during the embryo donation process may be reasonable but that additional counseling closer to the time that disclosure might take place, will probably be more appreciated. Perhaps even more important, embryo recipients want to hear from other recipients, people who have worked through the issues or are struggling with the disclosure issues themselves (Klock SC, 1997). At EDI, we have plans to create a forum where patients will be able to seek highly desired anonymous peer support.

We will continue this discussion, on disclosure issues from the perspective of the embryo recipient, tomorrow and also launch our final survey. The reference list will also be posted with this second half tomorrow. Stay tuned!