Desperately Seeking Kin: Genetic Longing in the Donor Gamete Context




A Birthday Celebration

IN LATE 2017, I was at the Caprice Restaurant in Tiburon, California, to celebrate a friend’s birthday. I, too, had an impending birth of sorts to celebrate. I had just signed a contract with a publisher for my first book, Romancing the Sperm.

“What’s your book about?” a fellow celebrant sitting next to me politely asked. I broke into my well-rehearsed elevator pitch about the politics of sperm donation, and how reproductive technologies were changing the meanings of family.

To my astonishment, he promptly volunteered, “I was a sperm donor back then. It was at a sperm bank down in Escondido.” To say I was instantly riveted would be an understatement. I knew exactly which sperm bank he was talking about, the Repository for Germinal Choice — the notorious “genius” sperm bank, which I had visited decades ago in 1998. I looked at him anew: he was attractive, bright, with a humble demeanor, and he was well dressed in a navy hand-tailored sport-coat, with top-stitching along the lapel.

Did he know if any children were born of his sperm? Six, he said. Maybe more. He had no children of his own, he told me. And his mom, he said, was 98 and never had grandchildren. “I think it would mean a lot to her if she could meet them,” he confided softly.

As an anthropologist, I desperately wanted to continue this conversation — but elsewhere. I was fascinated for several reasons. While we hear about children searching for their sperm donors, we don’t often hear of sperm donors longing to be found by their biological children. I knew it was possible, though. For my book, I had interviewed sperm donors, and the vast majority did indeed want to be found.

As a graduate student in the UC Berkeley Department of Anthropology in the 1990s, I had been privy to heated debates among the departments’ professors on nature versus nurture — or biological versus social determinism. These debates were so intense that the department ultimately fractured, with many of the biological anthropologists migrating to “Integrative Biology.” Across the bay, Stanford’s Anthropology Department had also split over the mutual disdain of cultural and biological anthropologists. For my part, I found myself uncomfortably trying to reconcile the two camps. I was a cultural-medical anthropologist in training who also taught biology and biological anthropology. I wanted to understand how people on the ground think about genetic inheritance when choosing sperm donors, and how they fetishize, or not, “genes.”

Intellectual theorizing is, admittedly, detached from people’s lived experiences of what their biology, and their biological connections, means to them. It seems ironic that in the world of gamete donation we simultaneously elevate the significance of “genes” when selecting donors and dismiss the idea that genetic connection carries meaning for the children created. Indeed, the entire process of creating parents through gamete donation requires promoting social parenthood while eradicating the significance of genetic parenthood.

The Troubled Meaning of a “Genius” Sperm Bank

The Repository for Germinal Choice, where my neighbor at the birthday party donated his sperm, was founded by Robert Graham. Its mission was to bank the sperm of healthy and “highly intelligent” men, and then use it to inseminate married women whose husbands were infertile. It had a strict policy against providing donor sperm to single women or lesbian couples.

Graham thought he was engaging in public service — performing virtue by improving society as a whole. He was inspired by American geneticist and Nobel Prize winner Hermann J. Muller, who believed selective insemination could improve the human gene pool. In short, the sperm bank is notorious because it promoted “positive eugenics” through assisted reproduction, thus launching ethical debates around “designer babies.” That notoriety is the reason I visited in 1998.

To this day, I still recall the wall of Graham’s office, plastered with photographs of predominantly blond-haired, blue-eyed children. One photo stood out prominently — the largest on the wall — of a blond steely-eyed young man wearing a suit. He appeared to be just at the upper edge of adolescence. I figured he must have been the bank’s first baby, born in 1982, and wondered what it must be like for him — and the 200-plus other children born from this bank — to figure so prominently in a bio-social experiment.

The Repository was also one of the first sperm banks to provide intended parents with a catalog of donor profiles to peruse — putting donor selection into the hands of recipients rather than doctors. On the one hand, this enabled consumers to have more control over whose sperm they chose. On the other hand, it opened up a Pandora’s box in the gamete donation world. As a result of consumer sovereignty in the United States, we now have a multitiered bio-market, where some donors are deemed to have dramatically more value than others. We especially see this in the market for human ova, where most egg “donors” are paid between $7,000 to $10,000 on average for a single donation cycle. The highest I’m aware of is $250,000 at an agency matching “elite” Asian donors with wealthy clients from China. Clients who can afford to pay such prices have a laundry list of desired traits, and recruiters then try to match them with “the perfect donor.” This situation is unique to the United States.

Donor Light/Burgundy

A couple of weeks after the dinner party, I met Jason at his apartment on the Embarcadero, on a sunny San Francisco morning. As I waited in the lobby, a spry elderly woman, standing less than five feet tall, departed the elevator and headed straight out the glass doors to the San Francisco streets. “That must be Jason’s mom,” I thought to myself.

Jason greeted me in his apartment hallway, this time more casually dressed in jeans and T-shirt. He and I sat down in his stark white kitchen, by the floor-to-ceiling windows overlooking the bay, while he told me his story of becoming Donor Light/Burgundy — the code name he was given at The Repository for Germinal Choice. Unlike most other sperm banks, RGC had a strict policy that donors not be paid. Their stated rationale? Promoting “altruism” through donor insemination.

I first saw an article published in the Wall Street Journal, back in 1984, when I was about 30, which talked about several different sperm banks, and about how donors felt they were being helpful, and making the world a better place. I cut out the article and saved it for, maybe, six months to a year. I finally decided to call the Repository for Germinal Choice because it was close, and they responded pretty much right away. 

When I met Dr. Graham and he talked about who some of the other donors were — an Olympic medalist, a Nobel Prize winner — I felt like, “What the heck am I doing here?” I think they were impressed with my educational accomplishments, you know a bachelor’s from MIT and an MBA and master’s in computer science from Harvard.

“What prompted you to be a donor in the first place?” I asked Jason.

I think I knew at that time that I was gay, even though I never had a sexually gay experience. And I think on some level I knew I would never be in a conventional relationship in which I would have kids. I think that had much to do with my decision to be a sperm donor, so my genes wouldn’t just die off with me.

When I filled out the application form, I remember there was a box that asked about sexual orientation. I remember pondering over that. I knew I was attracted to men but had never been with a man, so I put that I was heterosexual. But I always felt conflicted about that.

The irony was palpable. Despite its restrictive selection process for donors and intended parents, the bank really didn’t have the kind of control over its pool of donors it assumed. If there had been a question asking if he was attracted to men, and if Jason had responded truthfully, then surely he would have been rejected for this reason alone. And yet it was for this very reason that Jason wanted to donate: to ensure genetic continuation in the face of an uncertain reproductive future. While “helping others” is certainly a noble undertaking, when it comes to passing down one’s genes it is virtually impossible to have purely altruistic motives.

“Did you ever think when you donated about some day meeting the kids?”

I did. There was a box on the application I could check about whether I’d be open to being contacted when the child reached 18. So I checked that box.

Then, in 1986, Dora, the office manager, called to tell him a baby was born. “I was so excited when I first found out,” Jason recounted. “It was a really great feeling. Then she called again in 1990 and told me of another birth — I think there were six children total — but she sent me pictures of two of them.”

Jason gestured to the photos sitting on his glass coffee table, an infant and a toddler, both half biological brothers who looked almost identical. The two boys were close in age and — unless one of them tracks his biological kin via a service like 23andMe — they are unlikely to ever meet. They may not know they were donor-conceived, if their parents kept it a secret. Even if they knew, would they want to meet their donor, or genetic half-siblings?

Biology and Identity

I met Nick through a Facebook group for donor-conceived people and their allies. Nick was born through sperm his parents purchased at the same “Genius” repository where Jason donated many years prior. Nick is on a mission — “to kill donor anonymity” — as he puts it.

I asked him how he first found out he was a product of donor sperm from this bank:

My mom and my social father were in the process of getting a divorce. She kept grilling me about doing better in school, telling me to be a doctor or a lawyer, and telling me I had all this potential and I was just wasting it. So I said, “Why don’t you actually tell me what’s really going on and about whether my dad is really my dad, because you keep hinting at things.” 

So she told me she was a savvy consumer, and that she got the best sperm she could get and that I had genius potential and my dad had a Nobel Prize. She was completely sold on Graham’s vision.

On one level, I was relieved — and a part of me always knew — because my social father and I never were anything alike, we looked nothing alike, and we never got along … I was also angry, and a teenager, and having an identity crisis and going through all these stages of grief.

So I went on a year-and-a-half quest to find my real dad. Your biology is a part of what makes your identity, what makes you you. To deny someone that is cruel.

Nick’s mother told him when he was a teenager. Some parents tell their children much earlier so that they never experience the trauma of being lied to. And some never intend to tell them, and only do so under duress.

Discovering Family Secrets

Matt was raised in what he describes as a “pretty idealistic, hetero, Christian family” — exactly the type of family that the Repository for Germinal Choice catered to. Matt didn’t discover the secret of his conception until he was 25, when his wife — his high school sweetheart — was pregnant with their first child.

Growing up, I always had this feeling that my sister and I were like these perfect trophy children. I had some real identity issues growing up, and never felt a connection to my father — even though on the surface he seemed like a good dad. When I saw the first ultrasound of my baby in my wife’s womb, this question came up from being buried deep in my subconscious: “Was my dad really my dad?”

That day I went home and called my stepdad — that’s how I think of him now — and asked him straight out: “Is there something you’re not telling me?” And that’s when he finally told me the truth. 

I was really depressed. I was physically ill when I found out. Trying to start my family. On the one hand, suddenly everything about my life, and why I never fit in [to this family], made sense. On the other hand, it was weird. I’m supposed to love him because he raised me. But it feels like Stockholm syndrome, like I was abducted and I have these conflicting feelings. Like they’re just using me to heal their own pain.

They took my ability to have my biological information — my family. They took their suffering and gave it to me.

When intended parents decide to use a sperm or an egg donor they are frequently told things like: “It’s just a little piece of DNA”; “the parents are the ones who love, nurture, and raise a child”; “using a donor is just like finding a missing piece of the puzzle.” These metaphors help infertile people process their inability to have genetic children and then accept their donor-conceived children as their “own.” But rarely do these narratives address the fact that someday the children will grow up to have their own ideas about what their “biological material” means.

The Quest for Belonging

Nick’s and Matt’s discoveries led them both to seek out their respective donors, but through different methods. Nick found his donor with the help of David Plotz, author of The Genius Factory, a book that inspired a documentary film by the same title. Through his donor’s ID code, Plotz was able to help Nick make the connection.

His biological father had 18 children of his own with several different women, in addition to the 30 half-siblings conceived through the sperm bank.

Meeting him was not at all what I expected. He was hyped up to be this genius, and I went to his house and I was like, “Oh my god, his house is a mess, there’s roaches,” and I couldn’t even put my infant son down it was so bad. And he started talking about all his ex-wives and all his kids, and he was just not the image I had in my mind — especially since he was hyped up to be this genius. So I had to let go of all the expectations and images and accept him for who he is.

And I do think he’s a genius. But there’s a dark side to giftedness, and that has plagued me my whole life. Capability and intelligence don’t always go hand-in-hand. And Graham had this whole mission that I didn’t sign up for. He was making decisions about what I’m going to do with my personal freedom before I was even born. 

But yeah, I actually like my dad. We’re all like the Island of Misfit Toys, but I feel like I finally belong.

Nick has struggled with schizophrenia since adolescence. Once he met his biological father and some of his siblings — many of whom also have mental health issues — he understood why. His schizophrenia is mostly under control now, but it has had an enormous impact on his life, his relationships, his work, and his sense of self. He’s now learned to recognize the signs of an episode and has a better understanding of how to talk himself out of his delusions, but he certainly does not feel like the beneficiary of the “designer genes” his mother was promised. In my conversation with him, he did seem highly intelligent — a creative, out-of-the-box thinker — but, like he said, there’s a dark side to giftedness, especially when you feel like you never fit in.

In 2016, Nick authored a citizen’s petition with the FDA to strengthen regulations and government oversight over the fertility industry — including a call to do away with donor anonymity. After a year and a half, he’s still waiting for a response.

As for Matt, his quest to find his biological father was more circuitous.

First, he plunked down $200 to sign up as a lifetime member at the Donor Sibling Registry (DSR), a voluntary online registry launched by Wendy Kramer — a single mother who conceived with a sperm donor — and her donor-conceived son. To date, the registry has enabled over 14,000 donor-conceived people to connect, including donor half-siblings, as well as donors and their genetic offspring. DSR now has over 56,000 members.

When the DSR proved unsuccessful for Matt, he turned to direct-to-consumer DNA testing.

Without DNA testing, I would not have found my family. I used the tests and a combination of three websites — 23andMe, Ancestry.com, and Family Tree DNA — to start building a family tree. First, I found a third or fourth cousin, and she helped me. Then I went down the line to where my dad went to university, and reached out to one of his first cousins, and she DNA tested for me. She had also spent the last six years compiling 300 pages of family history, and had pictures, and details about my grandmother and grandfather and our ancestors who had all immigrated from Russia a long time ago. And she gave me a photo of my great-grandmother and her rosary to give to my sister — who just turned Catholic — from the 1800s. All of the sudden, after years of not knowing who I was, I came into a windfall. It can happen so fast when you make discoveries.

When Matt reached out to his donor, however, he didn’t get the reception he had hoped for. The donor had planned on remaining anonymous, never having told anyone in his family — including his own kids — that he had been a donor.

When I first found my dad, he didn’t want to connect with me. It was really hard to find him and then to be rejected like that. But now we’re in a better place, and we haven’t met in person yet, but we talk on the phone and have these really deep conversations. There’s so much similarity it’s wild, and I feel like a whole person now. My dad said our family genes are ambitious, intelligent, and entrepreneurial. I feel like where I come from is flowing through me. 

Matt’s success led him to start helping others forge the connections they so desperately desired.

I built donorchildren.com because I wanted to build a social network, based on a model like Facebook, where you can make a profile, share pictures and stories, and be a resource to researchers. I wanted a free alternative for people in my community, where we could really help and support each other as donor-conceived people — because nobody else can really ever understand what it is we go through. We currently have over 2,500 members, and a few years ago, in one year alone, we made 150 matches, mostly with people using whatever information they have — like their donor number or the clinic where they were conceived — in addition to DNA testing. DNA testing is critical if you don’t have the donor number, and it’s a much faster way of finding people than waiting around for someone to find you and reach out to you on other kinds of registries.

For me, it had to be free. Money creates a barrier for connection. And a lot of us have huge issues about our parents having paid for the products that made us, and [our] having been lied to, and then not having the information about our identities, and then having to pay to find our biological families. It’s like we’re exploited from every angle.

Like Nick, one of Matt’s long-term goals is to build a network of donor-conceived people in order to then create legislative change designed to ban donor anonymity. 

“Dirty Secrets” and Primordial Wounds

Dani Shapiro, author of Inheritance, discovered her own family secret when she was in her 50s. Out of the blue, her husband suggested that they both spit in a tube and ship it off to Ancestry.com. That split-second decision forever changed her life, revealing that her dad — who died in a car accident when she was in her 20s — wasn’t her biological father. Dani eventually found her biological father — a medical student, bioethicist sperm donor.

I attended several of her book readings in the Bay Area. The audience was shocked when she talked about the common practices of decades past, such as “sperm mixing” (combining husband and donor sperm so parents could plausibly deny that the father who raised them was not their bio-father). My own research had also revealed other questionable practices: doctors inseminating their own patients while telling them their “donors” were “medical students”; doctors substituting a different donor when the selected donor was not available; doctors counseling families never to tell their children the nature of their conception.

Who were these secrets and lies meant to protect? Certainly not the children born from these arrangements. 

I attended a genetic genealogy conference in San Diego, California, headed by CeCe Moore. CeCe has been instrumental in helping people of unknown parentage find their genetic kin, regardless of how they were conceived. She has also been heavily involved in using the same genetic genealogy methods for criminal forensic DNA detective work — tracking down murderers and rapists. Speakers at her conference addressed the multiple layers of using genetic technologies to trace lineages — 23andMe, Ancestry, upload to GEDmatch, and almost instantly forge new connections with distant cousins on the path to striking DNA gold — a biological sibling or parent.

One woman I talked to — a white-haired woman who appeared to be in her late 60s — discovered she had been conceived with the sperm of her mother’s fertility doctor and had over 50 biological half-siblings. All but one of them meet monthly in an online forum. She told me she had always felt unlike her father’s side of the family. Now she knew why. These genetic half-siblings’ discovery of each other revealed a deeper scandal: that a physician was inseminating his patients with his own sperm, not the sperm of an anonymous donor, as their parents were told. This sort of discovery has become almost banal, with multiple such cases of physician-as-surreptitious-donor surfacing in the past year.

Secrets uncovered via a vial of spit and a DNA test kit — this was unimaginable 20 or more years ago, when donor conception was emerging as a solution for infertility. Fertility doctors who once upon a time thought inseminating their own patients was a good idea must now think twice.

Whither Anonymity?

When I first started working on the topic of donor conception, physicians and professionals and women patients were mostly focused on addressing the challenge of getting women pregnant, whether through donor sperm or donor eggs or any combination. At the time, few thought about how the donors — or indeed the children so conceived — would come to think of those with whom they shared DNA.

With advances in DNA testing, online resources, and social networking, donor anonymity can no longer be guaranteed, nor should it. Yet, some clinics and agencies with egg and sperm donation programs still try to cling to an impossible business model, requiring donor anonymity.

This said, in my over 20 years interviewing both sperm and egg donors, the vast majority — over 95 percent in my research — are like Jason; they do in fact want to meet the children born from their donations, either in the immediate future, or after the children turn 18. While not all donor-conceived people seek out biological connection, many do — regardless of their relationship with the parents who raised them. Nowadays, if a prospective donor does not want to be found, he or she probably shouldn’t donate in the first place.

I asked Jason why finding his genetic children is so important to him. In a nutshell, he’s curious, he wants the connection, and he intuits how Nick and Matt and many other donor-conceived children feel:

I think if I knew I was born from using a sperm donor, I would want to know. I think it would illuminate aspects of my life. Knowing my father and mother, I see parts of them in me. So I assume that if I’d want to do that then my biological offspring might also want to. You might gain newer additional insights about yourself if you know where you came from.

Donor-conceived people want what so many of us take for granted — to know where they came from. And it seems donors, at least some of them, are at least willing to answer questions.

As a medical anthropologist interested in how people think about biology, I used to prioritize nurture over nature, environment over genes. While I still reject biological determinism on principle, I can no longer claim to think nurture trumps nature in all situations. Listening to the stories of people who feel genetically disenfranchised has led me to new conclusions: for many people genes mean something. In fact, genetic test kits have created a DNA frenzy, with over 26 million people now having swabbed their cheeks and sent their cells off for analysis. Most do it on a lark, like Dani Shapiro, and some uncover life-altering information.

Individuals ascribe all sorts of traits to their DNA, from the obvious like hair and eye color, to the less obvious — and more controversial — like musical talent, athleticism, altruism, and academic performance. They imagine genes as pieces of their identity that can make them fit or not into the family that raised them — regardless of the fact that many people who are born into biologically connected families still don’t feel they belong. For Nick, meeting his “misfit” donor and biological half-siblings provided him with a sense of belonging he had never before experienced.

Most of us can understand why donor-conceived children like Matt, Nick, and Dani would have some curiosity about their donor, or perhaps even want to meet them. But rarely do we think about donors’ desires to meet their genetic children. Some may well imagine that egg donors might be more inclined to meet their “egg babies,” as they sometimes call them, than sperm donors to meet their sperm babies. My conversations over the years with both egg and sperm donors reveal that these gender-based assumptions are incorrect. In fact, many sperm donors — like Jason and unlike Matt’s bio-dad — do want to meet their biological offspring.

If you think you could be the genetic offspring of donor “Light Burgundy,” he and his mother — who is celebrating her 100th birthday this June — are waiting to meet you. And you may be the lucky recipient of genes for longevity.

Feel free to contact me by email and I will be happy to make the connection: eggdonorresearch@ucsf.edu.

¤

Diane Tober, PhD, is a medical anthropologist and assistant adjunct professor at the University of California, San Francisco. She is the author of Romancing the Sperm: Shifting Biopolitics and the Making of Modern Families (2018). She has been conducting research on assisted reproduction, gender and sexuality, and the commodification of the body for over 20 years. Her current research — funded by the National Science Foundation — examines egg donors’ decisions and experiences, comparing human biomarkets in the United States and Spain. She is also working on a documentary film on the subject.

 

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