Deciding whether to use a known donor, a donor that agrees to release identifying information, or completely anonymous sperm or egg donor is a hot topic in infertility circles nowadays. The American Society of Reproductive Medicine (ASRM) Conference had a great session on this, and the panel has agreed to recreate the session by appearing on the Creating a Family show. (We’re booked solid until mid January, so it will be after that). So many issues are involved with this topic—both on the personal level of patients facing this decision and on a policy level. The issue is front and center right now because of the recent release of “My Daddy’s Name is Donor” a report by the Institute for American Values (I hate that title since donors are many things, but absolutely are not daddies.); Test Tube Families: Why the Fertility Market Needs Legal Regulation, a book by Naomi Cahn; Eggsploitation, a documentary by The Center for Bioethics and Culture; and the recent spate of movies that touch on this subject (The Kids Are All Right and The Switch). The Donor Sibling Registry has long encouraged use of identified donors.
On a personal level potential parents have to consider their needs, and their future child’s needs in the short term and also when they become an adult. Will the child want to know who they look like, will they want to contact the donor someday to get an updated medical history? Parents have to balance their need for “just being a normal family” and their desire to not complicate their child’s life with their child’s possible future desire or need for genetic information. They have to decide whose information this really is—theirs or the child’s. They are deciding all of this in the midst of one of the most stressful times in their life and before the potential child is even born. And those are just the rational considerations. There isn’t enough room to list the irrational, but real, thoughts that run through potential parents’ minds when making this decision. I should add that there is precious little long term research to guide their decision.
On the policy level, many are pushing for the government to get more involved. They reason that that’s the job of the government—to step in and regulate for our better good. Eleven countries already ban anonymous gamete donation because they believe it is not in the best interest of the child, the donor, or the parents. They argue that anonymous egg and sperm donation is encouraged by the “infertility industry” since it is easier and cheaper to administer. But does requiring the release of identifying information reduce the number of people who are willing to donate their egg and sperm. Should donors and prospective parents have the right to choose? While it is possible to ban anonymous donation, governments can’t require that parents tell their children. If a child doesn’t know they were conceived with donor sperm or egg, identity information is of little use.
I’m going to save the more in depth discussion of whether we should ban anonymous gamete donation for the Creating a Family show we will do, but I wanted to share some information I learned about on this topic at the conference. I spoke with Dr. Michelle Ottey, with Fairfax Cryobank and Cryogenic Laboratories about this issue. She told me that they had conducted an online survey of their clients in 2008 to learn more about what they wanted. They had a 99% response rate, with about 34% of respondents in a heterosexual relationship, 29% in a homosexual relationship, 28% were heterosexual singles, with the rest identifying with some other category.
They found that over 60% of the heterosexual couples preferred anonymous donation, 45% for heterosexual singles, and 50% for homosexual couples. About forty percent of the heterosexual couples and homosexual couples that chose an anonymous sperm donor said that anonymity was an important factor in choosing a donor, compared to just 20% of heterosexual singles.
Sixty-eight percent of respondents said they are not interested in seeking out half siblings by the same donor. Fairfax thought there might still be a need for a safe place to make this contact, so they set up an online forum on their site. These forums have been a great success, and subgroups have formed around individual donors. Perhaps there is more interest if the opportunity exists in a secure environment.
Dr. Ottey did not tell me the number of respondents, and this survey has not been peered review, but it is a snapshot of what people using sperm donation prefer. This confirms what I hear from our audience. From my discussions with couples choosing egg donation and from Marna Gatlin over at Parents Via Egg Donation, a wonderful support group, about half of the couples choosing egg donation prefer to use an anonymous donor.
I also had an interesting discussion with Stephanie Goldman-Levich, Co-Founder of Family Creations, an international egg donor and surrogate agency that facilitates anonymous, semi-open, and fully open egg donor arrangements. She is also an adult adoptee in a closed adoption. As you might imagine, she has thought about this issue a lot from both a personal and professional standpoint. I asked her to share her thoughts.
“At the time I was born, my parents hadn’t thought to request photos of my biological mother, or gather any genetic information to save for me when I got older. (They later went on to adopt my sister and brother and realized that would be nice information to have and therefore requested it from each of their biological mothers.) So while my parents were always very open with me about my conception, they didn’t have anything to share with me other than the story of my adoption. I didn’t think twice about this until I was in my early teens. The main thought that entered my mind around that time was “I wonder if I look like my biological mother!” As a young teenager, a simple photograph would have easily satisfied that curiosity. Moving into my high school years I also began wondering more about genetics. We learned about genetic diseases in health and biology classes, and it occurred to me that my family history was a blank slate. Doctor’s would ask in my yearly physical’s if I had a history of diabetes, cancer, heart disease, etc. All I could respond with was ‘I’m not sure. I’m adopted.’
Transitioning into egg donation, our program provides recipients with photographs of each egg donor, including a detailed profile which includes personal information and genetic information about the donor, and the donor’s family members. Recipient parents looking for an egg donor get to view this information prior to selecting a donor. This information is available to print, save, and provide to children (when parents deem it is appropriate) at any time in the future. In fact, our agency will very soon be providing recipients with a CD that includes all of their donor’s information so that they can share it with their offspring later on down the line if they choose to. While the profiles do not have the donor’s last name, date of birth, social security number, etc, (and therefore these would still be considered anonymous egg donation cycles), the profile would provide the child with photographs, personal information, and genetic history of their egg donor. Being adopted, this is the exact same information that I had wanted growing up. …
… I am completely against [the government banning anonymous donation] and think this idea would bring way more harm than good to our reproductive community.…I have many clients that come to me in their search for a donor very concerned about confidentiality. They are only interested in an anonymous donation because due to their family’s cultural or religious beliefs, their family will not accept, and will not love any child that is born as a result of egg donation. While anyone can hear this and say it is wrong and unjust – this is their reality. …
In summation, as an adult adoptee and the owner of an egg donor program that facilitates both anonymous and open egg donation cycles, I believe that the right to choose is key. I do believe that every person has the inherent right to know their genetic background. (And I am happy that I was able to obtain information later on in life.) But the important thing to remember is that we are still able to provide offspring with the information they desire (satisfying the same curiosities I had) through anonymous egg donation cycles.
Food for thought; what do you think?
P.S. For purposes of this blog, I’m not going to talk about using a known donor, such as a family member or friend. We have covered some of the advantages and disadvantage of this choice and suggestions for making it work in a number of Creating a Family shows. (How to Choose An Egg Donor, Psychology of Donor Conceived Children, Are you Ready to Move to Donor Eggs or Sperm?, What 3rd Party Reproduction Can Learn from Adoption) Also, let me be clear that I’m talking about using known or anonymous gamete donors, not about whether to disclose to the child that she was conceived through donor egg or sperm. The issue of disclosure is another kettle of fish entirely, and one I feel strongly about and have discussed before.
Image credit: ervega
Its true Dawn. I’m a pretty radical activist because things could be so much more fair than they are. You are so calm and warm to every person that makes a comment and you respond by telling each person that they have given you something to think about and then it does seem to be the truth. Yes your wonderful and I don’t think your cashing in on people’s pain either which is common I think with infertility and adoption industry, you wrote an article on it even. You have different opinions than me but your just trying to get people in a good head space to raise kids and be happy.
Thanks Marilyn.
Dawn I think you are wonderful. I’m going to forward a link to some people who blog about being donor offspring. You all don’t have what they call baby blinders on. This is a really civilized conversation.
Marilyn, {smile}. Coming from you that means a lot!
People are joining dna family reunion websites because they have some lurking suspicions that they may not really be the child of the people named as parents on their birth records and they get a list of a couple hundred maternal and paternal relatives that updates once a month The relatives can be as close as mother or father, or as distant as 5th cousin once removed. The tests are a cheap way to not only find out if they are being lied to but are the key to reaching out and searching for their family day in and day out so that they are notified whenever a relative joins the reunion website.
It’s going to become almost common place to join if the woman named mother on their certificate was 35 or older when they were born. Certain social and economic traits help tip the suspicion scale like being older AND married, established in their careers owning property college educated, married for a while prior to their birth or had tried to get pregnant a while before they were born. Any older siblings from their parents previous relationships is another cue that might pique suspicion. If they have a fraternal twin or are trips or quads.
There are certain hospitals where there have been well known mix ups and misappropriations of eggs sperm and embryos and if they were born at OHSU or any of the University of California hospitals it’s not a bad idea to join these reunion websites because lots of patients eggs and sperm and embryos were taken and given to other patients without their permission and people unwittingly stole these kids from their families and patient confidentiality prevents their real parents from knowing where they are or who is raising them. It’s tragic. So anyone born in the Irvine area of California in the late 1980’s through mid 1990’s should really just join because they will probably find their siblings or parents on their. That is just an uneducated guess but as someone who devotes a lot of time to reuniting these separated families I think its trending toward resolving their own suspicions when things seem fishy if they are raised by people who are just a little to old and were just a little too stable when they were born they are being proactive they don’t have to take the word of the people they are suspicious of. Also because of the scandals and mix ups at universities anyone who did IVF or AI with what they thought were their own genes might want to join the reunion websites because they might be on the receiving end of a mix up or worse they might be one of the patients whose gene’s were misappropriated and used on other patients as if they were a consenting donor because then the clinic makes a larger profit not paying its donors because they are patients giving up eggs and sperm for free for their own use.
These are just observations and something to think about for people trying to navigate this subject at home with a real kid. An anonymous donor can still be located if her relatives join the reunion website. If your sister donated her eggs and you had potentially 10 nieces and nephews living in your region potentially going to school with your kids, their full first cousins, you’d totally join who would not?
I was really surprised to find out so many actively prefer anonymous donation, rather than just ending up with an anonymous donor for more circumstantial reasons (for example: because the selection was bigger, because the non-ID-release donors cost less, because they had very restrictive ethnicity requirements that they could not find in an ID-release donor). We used a known donor, which you correctly call a different situation entirely, but if we had needed to use a commercial donor, we would have felt very strongly about the need for an ID-release donor. Perhaps many donor-conceived individuals feel the way that Ms Goldman-Levich does about the basic info provided by the bank fulfilling all of their curiosity, some nevertheless do feel very cheated by not being able to seek further information. Perhaps that is a vocal minority, and the majority of donor-conceived individuals would be wholly satisfied with basic information rather than full ID-release, but I would hate for there even to be a small chance my children to become resentful about an aspect of their conception story that I had control over, or even just have questions that I would be unable to answer. An ID-release donor doesn’t obligate the child to seek out the donor at all — it just allows them the choice, once they are an adult. So for me, “the right to chose is key” is something I agree with, but I feel it should be the choice of the child, not the parents.
I don’t at all follow the argument that many clients are “very concerned about confidentiality” – if “their family will not accept, and will not love any child that is born as a result of egg donation”, how is that solved by using an anonymous donor, unless it is coupled with a lack of disclosure about donor gametes to begin with? And wouldn’t that lack of disclosure be just as easy in a situation where the donor is an ID release donor? I may be wrong about this (as is this is not the way we built our family), but I thought the way that ID-release donation worked was that the child had the option of contacting the bank at adulthood and requesting contact information – not that the bank contacts the child.
My only concern with banning anonymous donation is that it would realistically restrict the availability of donors to a very major degree, since it seems the majority of donors (or at least would-be donors I’ve spoken with) would prefer anonymity. I’ve heard anecdotally that some countries that require openness have a very major shortage of donors available as a result.
If you do a show on this at some point in the future, you might want to consider including some information on the court case that’s happing in British Columbia (Canada) right now where a woman is fighting to have donors known. It’ll be interesting to see where that goes.