Guest post by Ellen S. Glazer, LICSW, Author of “Having Your Baby Through Egg Donation”

Over the course of several years I had the privilege of participating in many initial meetings between egg donors and their recipients. These meetings were almost always warm, optimistic encounters that transformed strangers into kin. I especially remember one recipient who seemed to float out of the room and phoned me a few minutes later to say, “I want her eggs more than I want my own.”

From my vantage point, donor-recipient meetings provided a solid foundation for many families built through egg donation. I observed that the women who had met their donors or spoken with them at length by phone felt confident and optimistic during pregnancy. They seemed to feel secure in knowing they were their child’s real, true mothers. In addition, having connected with their donor seemed to remove anxiety about where their child was coming from. In fact, that anxiety was often replaced by what I think of as the donor “add on” — the recognition that the donor brings something that is a nice and welcome contribution to the family. There was the donor with perfect pitch, the donors with a few additional inches of height, the donor with the entrepreneurial spirit that the recipient wished she had.

And so it was with a combination of fear and sadness that I “welcomed” the arrival of egg banks five or six years ago. I knew that these programs would be attractive to many women seeking donated eggs. Having the eggs “already there” spares recipients all the time, effort, costs and anxiety that came with finding a “real live donor” who had to show up, pass all her medical and mental health screening and then go on to produce good eggs. Undoubtedly, these programs would be cost-effective for recipients. (Although I did not appreciate how much the role finances would play until I began reading of “money-back guarantees”).

Egg banks could have been a “win-win” option — and perhaps some will still prove to be. A woman could undergo stimulation, have her eggs retrieved and frozen. She could then be matched with a recipient couple or individual whom she could meet or talk with before consenting to the donation. Recipients could enjoy all the benefits that come from meeting their donor and still be spared the anxiety of knowing it could all fall through. Frozen banks could have been great but so far they have represented a giant step backwards — in my opinion — for egg donation.

Recent visits to the websites of leading frozen egg banks confirmed my fears that the egg banks seem to have little interest in connecting donors and recipients. In fact, they seem to regard connection as either irrelevant or something to be avoided. By contrast, the frozen banks seem more focused on offering up an assortment of genes than a real person. One program proudly tells recipients that they will receive the following about donors: childhood photos, audio interviews, blood type, height, weight, build, whether pregnancies have been achieved, hair and eye color, years of education, grade point averages and SAT scores, ethnic background, occupation, interests, family medical history. With a special agreement people can sometimes arrange to receive adult photos. Fresh donor programs usually offer up several adult photos and I have known many recipients who have requested and received additional photos.

What is strikingly missing at “bank” websites is any recognition of the intimate and lasting relationship that would exist between the woman who donates and the woman who hopefully becomes a mother and maybe a grandmother and great-grandmother through her eggs. The connecting of family trees now and for generations to come goes beyond SAT scores and grade-point averages.

We are still early on in the life of egg donation. The first pregnancies through this process came in the early 1980s. We are earlier still in the world of egg freezing. I hope that people involved in egg donation — physicians, “egg banks” and recipients — will be moved — as I surely was — by the segment on CBS This Morning (January 10) that showed several sperm donor offspring enjoying a gathering with their donor. As one young woman said, “I always felt loved and wanted but something was missing before I found my donor.”

There is the opportunity for there to be a new generation of donor offspring who can grow up without that sense of something missing. I hope that some involved in the still “infancy” of egg donation will see this as an opportunity to lead the way.

I invite you to follow in the steps of many egg clinics and agencies, and offer your donors and parents the option of writing the Donor Sibling Registry into your sperm banking agreements — establishing anonymous (if desired) contact on the Donor Sibling Registry, right from the start.

The Donor Sibling Registry (DSR) is a non-profit organization that assists individuals who were conceived as a result of sperm, egg, or embryo donation and are seeking to make mutually desired contact with others with whom they share genetic ties. We facilitate contact among half-siblings (and their parents), and we also connect donors and families who wish to be in touch — often long before the children turn 18.

Since 2000, we have helped to connect more than 12,700 people on our website, and we now have a total of 48,400 members, including more than 2,400 donors. One DSR sperm donor was featured this week on the CBS Sunday Morning News show meeting several of his donor offspring.

Another donor describes his heartfelt reasoning for desiring contact:
“My decision to be a donor was inspired by the blessed gift of my children. They and their half-siblings (I only know of a son and daughter) have the right to know each other. With humility, I can say that I’ve never had misgivings about being a donor and continue to desire contact without any presumptions. I sent an inquiry and personal letter to [my sperm bank], and, having since discovered the DSR, will trust the universe in this quest. As a parent of children who are the light of my life, I already feel an affinity with the parents of these children conceived in trust and love.”

We’re reaching out to people who facilitate the creation of happy families. We’d like to partner with you. Here’s why:
• As we move toward increased openness as a society, there’s a particularly strong need to stay at the forefront of the trend within the donor industry.
• 2012 published research (Reproductive BioMedicine Online) on 164 sperm donors showed that, while 84% of sperm donors have never been contacted by their sperm banks for medical updates, 23% of the donors felt they, or close family members, had medical/genetic issues that would be important to share with families. 94% were open to contact with offspring.
• Registering on the DSR is the only way for parents and donors to stay anonymous (if desired) while still establishing relationships and sharing medical info.
• It can be of equal medical importance to donors that their offspring provide updated medical information, especially as the donors build their own families.
• We now know that there is a desire for earlier contact between donors and recipient families. Many appreciate the ability to establish contact and foster relationships as a child is growing up. Many think that 18 is an arbitrary age that does not meet the needs of donor offspring.
• Families often wish they could ask their donors simple questions, such as “My son would like to know if you ever played a musical instrument?” or “Is there any diabetes in your family?” or “My 10-year-old daughter would like to send you a Father’s Day message, is that ok?”
• The DSR can help by providing a valuable service to your parents and donors, and to your company — at no cost to you. (It’s a win-win-win!)

In 2015, another published study of sperm donors in Facts, Views & Vision in OB/GYN (the Scientific Journal of the Flemish Society of Obstetrics, Gynaecology & Reproductive Health), called “Sperm Donors Describe the Experience of Contact with their Donor-Conceived Offspring,” revealed that most of the surveyed donors had become curious about, and had made contact with, their offspring. Almost half of the respondents now considering their donor-conceived offspring to be “like a family member.” At the same time, donors were respectful of the integrity of the families in which their offspring were raised.

What Does a Relationship With the DSR Do for Your Sperm Bank?
 • CONTACT: The issue of contact between the donor and the recipient is removed from the hands and focus of the sperm bank.
 • CONSENT: Since the DSR relies on mutual consent, the sperm bank doesn’t need to be worried about protecting anyone’s privacy.
 • CHOICE: Each party can remain anonymous if they choose, so the decision is ultimately in the hands of those involved. Each party can decide how much information they’re comfortable sharing.
 • CURRENT: The sharing and updating of medical records happens on the DSR, so the agency/clinic has less work since they have provided a tool for medical updates.
 • EMPOWER: Parents and donors are empowered to set the parameters of their own relationships, without a middleman, and without waiting 18 years. Offspring have the opportunity to establish relationships with their genetic fathers while they are developing, not having to wait until they are adults.

We invite you to set a precedent within the sperm banking industry. Become a leader in fully educating and supporting families and donors. If we ask, “What is in the best interests of the child being born?” the answer is never “to use anonymous donors.” Anonymity is antiquated. It is a concept of the past in the adoption community and is becoming so in sperm and egg donation as well. The desire to connect is here now, and we can move the sperm banking industry forward in an open and supportive way, acknowledging the rights and needs of donor-conceived people to know about their biological parents, the rights of donors to know about children that they help to create, and the rights of parents to better serve the needs of their donor-conceived children.

We look forward to working with you! We have sample contract verbiage and frequently asked questions on the DSR website to help you incorporate the DSR into your donor and parent agreements.

Some feedback from the egg donation industry:
“More and more of our recipient and donor pairs hope to sign up for the Donor Sibling Registry. We often have comments about how helpful you are as a facilitator.” —Andi, Oregon Reproductive Medicine

“Each year I see more intended parents who want to make sure their child one day ”has the option” to meet their donor if they wish. As an agency I am grateful that there is a program like the Donor Sibling Registry that can be an advocate for the child, donor, and intended parents who desire this type of relationship.” —Katy Encalade, Program Director, Egg Donor Solutions

“Just wanted to send a note to say how much our clinic appreciates this option for our patients. Currently our office only offers anonymous embryo donation. However, some of our patients would like a more open arrangement. Your site allows patients who trust our office and want to stay with us, to have the best of both worlds. Now they have a place where they can go to control the amount of contact they have with their donor or recipient. It’s the perfect solution for them and we are grateful you offer this option!” —Christine, The Fertility Center, MI

“While exploring the idea of Egg Donation to build a family, there are unknown scenarios that families may encounter. It is simple for both intended parents and egg donors to consider their feelings and needs now but they may not fully understand what future questions there might be. The Donor Sibling Registry allows a safe and comfortable way to allow future communication when it becomes apparent it would be beneficial to a parent, the egg donor, or a resulting child. The Registry allows all parties to ask questions, exchange medical information, and possibly meet when the time is right for each. The Donor Sibling Registry allows all individuals to move at their pace, and the lifetime membership is a worthwhile investment.” —Kallie Wilson, MSW, Care Coordinator, Egg Donor Solutions

Interview link: https://www.dropbox.com/home?preview=20151207_133623.mp4

Unfortunately, this interview gives insight into many of the problems within the sperm banking industry. Sperm bank staff, including directors, are too often misinformed and can also be dishonest when presenting “facts” about donor anonymity, accurate record-keeping, contacting donors, and numbers of donor offspring. 

A few notes about the interview:

1. “Folklore”? I don’t believe that The NY Times, and many other reliable news sources, present “folklore” when talking about the large number of half-sibling groups.
This director needs to watch the documentary about Ben, the sperm donor with 75+ offspring. I promise you, this is not “folklore.”

2. Sperm banks are only minimally regulated by the FDA. The FDA mandates testing for STDs and a handful of other diseases. But because of lack of regulation or oversight, we have some banks testing some donors for some diseases. This particular sperm bank claims to only test for STDs. Some of the diseases that are supposedly tested for by sperm banks, such as Cystic Fibrosis, have been reported in donor offspring.

3. “We don’t disclose that ... it’s on our website.” What does that even mean?! She doesn’t disclose it, but you can read it on their website?

4. “Make an attempt to find the donor....” 18 years later? How do you find a person 18 years later? The truth is, not often, because sperm banks either do not regularly reach out to their donors, or donors do not respond and are therefore not find-able almost two decades later.

5. “A lot of hype out there.” We have many published papers in peer-reviewed academic journals and have had stories featured with The NY Times, CBS (we have an upcoming story on CBS Sunday Morning about a donor with more than a dozen offspring), NBC, TIME, and hundreds of other media outlets around the world.

6. Her hyperbole about comparing donor offspring to children conceived in the “back seat of a car” is ridiculous. What is that argument? A remark from a DSR parent: “What kind of ethics is this professor teaching when she uses the argument that more kids from accidental pregnancies don’t know their genetic parents as justification for denying that information to those people deliberately conceived where all the parties are known. It was an excellent example of gaslighting/diversion of the interviewer. Instead of addressing the topic, throw the person off balance by accusing them of ignorance of something completely different.”

7. She is misinformed about donor programs “disappearing” when anonymity was banned in other countries. Certainly not in the UK, as you can see with HFEA numbers — donors have increased since 2005 when anonymity was banned. Given the fact that her sperm bank does not offer open or willing-to-be-known donors, this is not surprising. Her sperm bank’s website touts their anonymous donor program: “With over twenty-five years of service, our highly selective anonymous donor program offers over 40 donors with diverse ethnic backgrounds.”

8. She is again misinformed about SART tracking the number of donor children: SART doesn’t track “a lot of that.” There are certainly no “anonymous donor numbers” as she claims. There is no entity that requires this type of tracking, and therefore, no one knows how many donor-conceived children are out there.

9. The interviewer is a Master’s student in Bioethics. (He is not affiliated with the DSR and did have permission to record the interview.) Telling him that “you can skew your paper however you want” or that there are “a lot of unknowns and you are not qualified to judge it” was condescending. Why so defensive and arrogant?

10. Again, she needs to read the published research in peer-reviewed academic journals about donor offspring. Her claim that only those on the “outside” can want known donors is simply not true. In fact, it’s quite the opposite. When we have the opportunity to properly educate and counsel prospective parents, they do not choose anonymous donors. They understand that they need to ask, “What is in the best interests of the child to be born?” and proceed with that answer in mind.

Unfortunately, this is a lot of the attitude that I encounter at reproductive medicine conferences.