How One Girl’s Search Brought Her 48 Half Brothers and Sisters

In NBC’s November 6, 2015, story about donor siblings that connected on the Donor Sibling Registry, we again hear from the spokespeople at the American Society for Reproductive Medicine (ASRM) and how utterly disconnected they are from the realities of donor family issues. Maybe that’s because the ASRM is made up of the very people that they are supposedly making recommendations for. So it’s a case of the fox watching the hen house. Without any outside regulation or oversight, it’s a case of “self-regulation” by a multi-billion dollar industry. (Where else have we seen the repercussions from a setup like that?!)

Judith Daar, the chair of ASRM’s ethics committee and a professor of law at Whittier Law School, questions whether it would be appropriate to put limits on sperm donors.

But the ASRM’s Sean Tipton doesn’t foresee the federal government establishing a sperm donor registry.

“They don’t want to spend the money, they don’t want the hassle,” says Tipton. “Before you are going to regulate people’s reproductive choices, you have to have a really good reason. I don’t think you want to jump in on a legal solution where it’s not certain what the long-term consequences would be. Could a similar regulation be enforced in a natural situation? Would we tell people who want very large families to restrict the number of offspring?” said Daar. “I think we would not favor the law limiting the individual’s ability to procreate naturally.”

Right, Sean, but in a “natural situation” there isn’t the possibility of creating 200+ children from one unknown person. And as far as having a “really good reason” for limits and accurate record-keeping, take a look at the Donor Sibling Registry Medical Issues page; you’ll see a lot of “good reasons” why this industry needs some sort of regulation, including comprehensive medical and genetic testing, updating and sharing of medical information, accurate record-keeping on the children born from any one donor, and limits of the number of children born from one donor. The long-term consequences of establishing a more responsible industry would only help donors, donor-conceived people, and their families.

Instead of pointing people to situations that are unrelated to us — the donors, offspring, and parents who have used donor sperm and eggs — why not be brave enough to address the actual issue — that there is no oversight and regulation in a high-profit industry that has acted irresponsibility and without ethics. Mr. Tipton has addressed the issue of regulation by saying that “we know any regulation of that is likely to impede access and increase the cost.” This is not about regulating “people’s reproductive choices,” or a matter of money — no one is challenging a person’s right to reproduce.

This is a different conversation, about the rights of the children this industry is helping to create. They should be able to know that there are limits on the number of half-siblings they can have, as well as have access to medical information and to their own first-degree genetic relatives.

Mr. Tipton tells us that the industry doesn’t want the “hassle” of creating a registry for accurate record-keeping. I feel that regulation and oversight of the infertility industry is a necessity and would only improve this broken system and help thousands of families who have used donor eggs and sperm to create their families.

A picture of 200 random people. This picture illustrates the largest number of half-siblings reported to the DSR.

Here’s one of my pet peeves: when people use the term​s “test tube babies” and “IVF” when talking about any type of assisted reproductive technology — particularly, methodologies that do not usually involve the use of IVF at all, such as sperm donation.

Both U.S. and international media and surprisingly, physicians from all over the world, too often confuse In Vitro Fertilization (IVF) with the general use of donor sperm via ICI or IUI: intra-cervical or intra-uterine insemination that happens inside the body, not in a petri dish. The term IVF is too often used as if it applies to ​all ​who utilize donor sperm, and sometimes children born from donor sperm are all referred to as “test-tube babies.”

IVF is the process of fertilization by first stimulating the ovaries to produce multiple eggs at a time, removing the eggs from the ovaries (egg retrieval), manually combining an egg and sperm in a laboratory dish, and then transferring the embryo to the uterus. Most women who get pregnant via donor conception do not need to use IVF. 

While IVF is necessary with egg donation, it is only used in a minority of donor sperm inseminations​, where the woman has infertility issues​. In our 2009 survey of 1700 sperm donor recipients, 83% of women used IUI or ICI (placing sperm internally), with only 16% using IVF (using an external petri dish) to conceive.

So for the more than four-fifths of us who used donor sperm to build our families, we did not need the use of a petri dish, only a turkey-baster type of medical device, and therefore we just don’t have “test tube babies.”

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

As a social worker counseling individuals and couples building their families through donor conception, I love reading the DSR’s “Success Stories.” They are so often testimonies to the shifting landscape of kinship and of people’s ability to pursue and nurture new forms of family. I’m not comfortable with anonymous donation and feel strongly that some measure of openness is best. However, what that “measure” might be varies — I believe — from one situation to the next and can surely change over time. My discomfort in any sort of “one size fits all” approach to openness prompts me to write this blog entry.

First, I want to say that it OK to feel uncomfortable reading “success stories.” If you come to donor conception after a long stint with infertility, you likely feel vulnerable. Everything that has happened so far has served to eat away at any confidence you had about becoming or being a parent. You long for something to work, to be blessed with a child you love and cherish and to feel that you are a real, true, full and forever parent. DSR “success stories,” heartwarming as they are to someone like me, could surely feed into insecurities. I feel it is important for you to know this is a natural reaction. It is also likely to be one that will diminish once you are a parent and have a little person or persons saying “mommy, mommy, mommy” all day long. I am reminded of a client who was feeling insecure when her twins were just beginning to walk and talk. She was catapulted out of this insecurity when her husband observed, “You know that if the donor walked in right now the girls would have no idea who she is, and most likely they’d run and cling to you.”

If you are considering egg, sperm or embryo donation or are already DC parents, I encourage you to see openness as a process. In my experience, it is usually not something that you can fully plan or predict or legislate in advance. Rather, it unfolds based on the particular “cast of characters” and on what is going on in their lives. I have seen situations in which people initially want no contact whatsoever and then something changes. That change might be sparked by a comment or observation from a nurse in their fertility clinic or something that the donor writes in their profile. Or they attend a support group and hear positive reports from others of their experiences meeting or corresponding with their donors. I remember one client whose fully open relationship with her egg donor prompted several other women to seek open donors. These were women who encountered the delightful donor/recipient duo in the clinic waiting room and said “I want what they have.”

“I want what they have” is a nice sentiment but can’t always be “operationalized.” Most egg donation agencies and cryobanks do not encourage donors to be open. Many do not even let donors know that openness is an option. Your donor might be open to openness if they knew it to be an option. Not knowing this, they are not only unlikely to initiate contact but may be guarded or reluctant if you seek it. So if you seek openness in an arrangement that was anticipated to be anonymous, you may have to take it slowly. Here’s another client example — a mom through egg donation who has never met her donor but whose goal has become “for her to be like another aunt.” She is starting to nurture this possibility through emails.

It’s also quite possible that you don’t want what they have. You may read the DSR website and blog and be convinced that you want to avoid/move away from anonymity. Still, you may startle or squirm when you read postings that say “I was found by my daughter” or “Finding my sister.” Again, it is OK to be uncomfortable with this language and maybe also the kinds of meetings they chronicle.

So ... as I began, I enjoy the DSR Success Stories and endorse some openness in donor conception. However, I also recognize and respect the benefits of taking it slow, seeing how things go and exploring relationships. I hope you can feel good and confident in being open to possibilities.