Conceiving identities

By Arts & Culture Editor

When I was 7 years old, my father told me I was conceived through an anonymous sperm donation.

As he told me the story of where I came from, the scene became burned in my memory like an acid-etched plate. On a breezeless summer day in June 2002, I idled my bike to a stop. I was tired; sweat was building up in my black, angular bike helmet, dripping down into my eyes. I stood next to a wrought iron fence lining a road that overlooked a drainage ditch, bone-dry in the unforgiving Texas heat. The few drops of sweat that fell to the concrete from my forehead quickly evaporated. My sense of identity, too, had evaporated.

It instantly made sense. My father had such rich, dark olive skin while I was stuck with an unappealing shade of boring white. My skin was only ever dark when sunburned. His thick, black hair was nothing like my own cow-licked chestnut. 

In elementary school, when prideful peers touted their “mothers’ noses” and “grandfathers’ eyes,” I felt the weight of an uncomfortable question mark dangling above my head. I would  never know my family history in its entirety.

In spite of my curiosity, today, at age 19, I do not know any more about my biological father than I did on that sweltering summer day. In conducting research for this article, I hoped to discover the number of sperm donors out there to estimate how many people could potentially be my biological father. 

Unfortunately, this data does not exist. 

This absence is the result of a series of errors in both federal and professional oversight of sperm and egg donation. Because there is no database to link donors to their biological children, the offspring are left without a way to learn about their genetic relatives—who could potentially include dozens of half-siblings conceived by the same donor.

Many sperm banks do not keep comprehensive records of donors’ identities, including how many children each DNA-giver has sired and to whom their sperm is given, leaving children with a permanent disconnect and a lifetime of uncertainty.

“There is no oversight, there is no regulation,” said Wendy Kramer, executive director of the Donor Sibling Registry, based in Nederland, Colo. “That is the problem. It is a multi-billion dollar industry that self-regulates. We’ve seen with other big industries that when they self-regulate, the result is an irresponsible and unethical industry, [and] this is no different.”

Kramer co-founded the organization with her son Ryan—whom she conceived through an anonymous sperm donation—to connect donors with their biological children, and children to their half-siblings. She said her son’s curiosity inspired her to help others like him find answers. 

“By the time my son was 2, he said to me, ‘So did my dad die or what?’” Kramer said. “It was at that point that we had the first conversation about a mom having an egg and [needing] sperm from a man, and that I went to a nice doctor—really, [we had] a 2-year-old conversation.”

Kramer said by the time her son was 6 years old, he hungered to discover his biological lineage. Ryan was not looking for a father figure, but rather for the missing piece of his identity, she said.

“I know for my son, he wanted to know who his donor was, but it was more important than that,” Kramer said. “He wanted to be known. He wanted his donor to know that he existed…. That was almost more important than knowing who the donor was.”

Kramer’s registry began in 2000 as a Yahoo group with 40 members, but in 2002, the group attracted the attention of network TV shows such as “The Oprah Winfrey Show,” “Good Morning America” and “60 Minutes.” Through the website, more than 11,000 of the nearly 43,000 members have used the registry to find their biological relatives, as of press time.

“Donor-conceived people, their parents and the donors themselves [began posting] to the group saying, ‘Wow, I didn’t know I had the right to be curious. I didn’t know I had the right to search and I didn’t know I had the right to connect,’” Kramer said.

Assisted reproductive technologies exist in many forms, including in vitro fertilization, a series of procedures during which mature eggs are collected from the ovaries and fertilized by sperm in a lab, and artificial insemination, which uses donated sperm to impregnate a fertile woman. Although sperm donation has been a technique used to address male infertility for more than a century, it became big business in the 1980s when advances in technology made it possible to collect and store donations on a large scale. In the United States, the industry is estimated to gross more than $3 billion dollars annually, according to the Center for Genetics and Society. The American Society for Reproductive Medicine recommends a limit of 25 children per donor in metropolitan areas, but stories of donors having more than 100 children have surfaced in recent years. 

The American Society for Reproductive Medicine, a nonprofit founded in 1944, oversees the sperm and egg donation industry, providing clinics and health professionals with up-to-date scientific and demographic research. Based in Birmingham, Ala., the ASRM coordinates and releases annual ethics statements suggesting guidelines for its 379 member clinics, which accounts for 90 percent of U.S. fertility clinics. However, the ASRM is not directly responsible for enforcing each clinic’s practices, according to Eleanor Nicoll, the association’s public affairs manager. Instead, it expects member clinics to follow the honor system by holding themselves accountable for following guidelines.

To hold clinics accountable, Congress passed the Fertility Clinic Success Rate and Certification Act in 1992, requiring clinics to report all procedures involving artificial insemination and egg implantation to the Centers for Disease Control and Prevention. The Society for Assisted Reproductive Technology—an agency that is independent of but closely associated with the ASRM—collects the data on egg donors from ASRM-affiliated clinics, which is passed along to the CDC. SART is an autonomous organization that is closely affiliated with the ASRM. The Food and Drug Administration then oversees the collection, storage and implantation of sperm and eggs. 

“If the clinics are members of SART, they commit to following the guidelines,” Nicoll said. “That’s a condition of SART membership, and if the clinics see the value of joining SART and see the value of following the guidelines, they are going to do that. It’s a voluntary membership society and the members voluntarily commit to following the guidelines.”

In reality, it is nearly impossible to determine if ASRM guidelines are actually enforced, according to Marcy Darnovsky, executive director of the Center for Genetics and Society. Clinics are free to follow their own policies—which Nicoll confirmed—but the ASRM does not check in on the clinics’ practices unless it receives a complaint that warrants investigation. Darnovsky said this lack of enforcement creates an impetus for clinics to ignore ASRM guidelines.

“The ASRM has these ethics committees, and they come up with these guidelines,” Darnovsky said. “But here’s the thing—they then do nothing to ensure or find out if their members are following the guidelines that this organization puts in place.”

The 10 percent of U.S. clinics nationwide that are not ASRM-affiliated are regulated solely by the CDC and the FDA, neither of which has established ethics guidelines for sperm and egg donation.

Darnovsky said activist groups have been pushing for better oversight and regulation of the reproductive genetics industry since the 1970s but have had little success. Kramer said fertility clinics need to keep accurate records of how many children are born to each donor for public health purposes, let alone for emotional reasons. Creating people is more than conducting a science experiment in a petri dish or breeding cattle; however here, there is little distinction between the two. 

“[For] every single cow that’s conceived through artificial insemination, there’s record keeping, but for humans—no,” Kramer said. 

Nicoll said SART is not required to maintain records of donors’ identities or how many children each donor could potentially parent.

Darnovsky said creating an accountable donor registry would address the bulk of issues that stem from anonymous donations. For instance, if donors develop a genetic disease after donating sperm or eggs, they should be able to update their files to provide accurate information to their potential offspring. Kramer said the ASRM actively lobbies against regulation in the industry because it could cut profits.

“That’s because the ASRM, the industry itself, won’t let it happen, won’t let any kind of oversight or regulation come in because it’s big business,” Kramer said. “It’s all about money. It’s all about profit.”

Nicoll said ASRM clinics relay donors’ medical information to recipients if it is reported, but it is not required that they update their profiles. Because not all donations are open, instances in which a donor willingly provides his or her identity, recipients cannot always obtain comprehensive medical history.

Additionally, ASRM guidelines do not standardize donors’ medical profiles, nor does the FDA regulate them or the CDC require them, Nicoll said. She added that each clinic designs its own procedure for gathering donor information.

As a part of the process of selecting a donor, recipient families are made aware of the donor’s choice and right to remain anonymous, Nicoll said. If the recipients want access to those records, she said they should instead pursue an open donation option in which the donor is not anonymous.

“If donors choose open donation, that should be, that has to be, their right,” she said. “If donors choose to remain anonymous, recipient parents do not have to choose to use an anonymous donor. It’s a collaborative effort, collaborative reproduction, and it works best when all the participants are on the same page on this issue.”

Nicoll said sperm and egg donation has been thoroughly vetted and comes under scrutiny for its regulation, or lack thereof, more often than other medical industries. 

In its defense, the ASRM compiled a 2012 report titled “Oversight of Assisted Reproductive Technology,” arguing that two federal agencies already oversee assisted reproductive technology and that the only significant improvement to oversight could be the extension of medical insurance coverage.

Brittan Gilmore, 16, said she has questioned her identity since she was a child. Gilmore said she had known she was the product of a donor egg and had always been curious about her origins as far back as she can remember. At times, she said, she felt detached and alone in her struggle. After years of fruitless searching online, she finally decided in January to give up her search.

“I was coming up empty every time,” Gilmore said. “I looked on the donor sibling registry one last time to get some closure and found another posting that was on there that was new. It had been on there for a few months.”

To her amazement, the new profile looked like it could be a match. JoLana Talbot had donated eggs in Gilmore’s hometown of Nashville, Tenn. around the time of her birth, and her physical description matched Gilmore’s. After a quick search, Gilmore found a Pinterest account linking to Talbot’s Facebook profile. Bracing herself for disappointment, Gilmore nervously contacted her.

Talbot said it came as no mystery that a 16-year-old from Nashville would be contacting her. When she made the decision to donate eggs, her motives were entirely altruistic—she hoped to give the gift of a child to a family in need and knew that her contribution could give them the same joy her own daughter had.

“I said [to Gilmore], ‘I used to live there. Are you looking for your donor?’” Talbot said. “Over time you start thinking, ‘These kids are getting older. What if they’re looking for me?'”

Janet Schreibman, Gilmore’s mother, said her daughter was conceived through in vitro fertilization. Schreibman was diagnosed with ovarian failure in her early 30s and was told she would never conceive a child naturally because her egg production had stopped completely. Although Schreibman is not genetically related to her daughter, she carried Gilmore and gave birth to her.

Schreibman said she and her husband, Jim, were initially worried that Gilmore was not yet ready to search for her biological mother, adding that for many years her daughter was reluctant to admit her curiosity.

“I think for a while, she was afraid to openly admit she wanted to search for her donor because she was afraid it would hurt our feelings,” Schreibman said. “The more we talked about it, the more we explained to her it was OK to feel that way and it was OK to be curious…. We [also] didn’t want to set her up for disappointment. We knew how remote the chances [were] that we would ever find the egg donor.”

Eleven days after Gilmore contacted Talbot, Schreibman matched Talbot’s donor number to her husband’s sperm number. Gilmore had found her biological mother.

Gilmore and Talbot’s families met March 27 on the set of Katie Couric’s show, “Katie,” and plan to continue their relationship. 

“I don’t want to say she’s my daughter because I don’t want to ever disrespect Janet and Jim, but in a way, that’s the way I look at her,” Talbot said. “Should anything happen to her parents or she needs somewhere to go, of course we’re here.”

Schreibman, Talbot and Gilmore all said they feel like they have gained a new family member. The DSR fills a need for some that the system disregards, Talbot said. 

“It’s not like adoption where there are records,” Talbot said. “We’re known as numbers. We’re not known as people. The chances of being found without the Donor Sibling Registry or things like that, it’s almost impossible.”

Happy reunions are the exception to the rule. Faced with a dead end of anonymity and a lack of accountability to link me to my donor or biological siblings, I may never know who I am related to unless we are all actively seeking answers. My unnamed, unnumbered half-brothers and half-sisters and I are the puzzle pieces that found their way out of the box. 

However, that does not mean the sperm donation that assisted my birth was as meaningless to my donor as I once believed.

After the late nights of working on this piece, it had never occurred to me I had never seen my own donor’s file. As I anxiously waited for a fax of the documents from my mother, I felt sick  anticipation. This was, after all, potentially the first and last piece of information about my biological father I would ever learn. With shaking hands, I flipped through the file on donor CB 116. 

He was 5-foot-11. Brown hair, like me. Eyes, blue-green, like me. Catholic, like me, though that is not exactly genetic. He did not have any children—yet, anyway—and is good with his hands, an artist well-versed in sculpture, painting, glassblowing and woodworking. Twenty years ago, he was in grad school, pursuing a degree in medical illustration. 

I pored over the only thing that connected us, 13 pages, many of them half blank, an extremely minuscule breath of life in the abstract image my biological father held in my mind. It meant the world to me to look at his handwriting.

At the end of the document, he wrote a personal message to the recipients:

“I wish you luck in your quest and desire for a child. I think it’s the greatest challenge to raise a child, a challenge I wish for myself one day. But for now, if I can contribute in some small way to you, I’m happy to do this.”

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