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Some families are forced to have kids outside their race because there isn't enough diversity among sperm and egg donors

Sep 18, 2020, 06:30 IST
Insider
Non-white parents-to-be don't always have many choices if they're using IVF.Samantha Lee/Insider
  • Cryobanks have a diversity problem: Many of their donors are white, which creates a dilemma for people of color seeking egg or sperm donors.
  • Non-white parents-to-be have few options if they want children who look like themselves.
  • The problem comes from both supply and demand: Black women are less likely to seek advice about fertility issues, and cryobanks struggle to reach potential donors.
  • There’s also a longstanding communal wariness toward medical institutions because of some of their racist histories, experts told Insider.
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In 2017, I started buying sperm over the internet.

I was 38 years old and in the very early stages of becoming a single mother by choice. The best way to start a family, I figured, was to use an anonymous sperm donor. My fertility specialist provided me a list of FDA-regulated cryobanks and wished me luck.

Buying sperm online requires getting a lot of details right. It's not quite like putting your order in at the drive-thru, but there are some "have it your way" similarities. Since my fertility treatment wasn't covered by insurance, I chose a cryobank that was a bit more budget-friendly and located near my fertility center.

Egg and sperm banks recruit donors for their reproductive material. Becoming a donor isn't easy. Applicants are screened based on criteria such as height, weight, education, age, and medical history. Once they've cleared various hurdles, they can donate.

The process for donating sperm is self-explanatory — you've probably seen it used as a sitcom B-plot. But egg donation is considerably more intensive: Donors are given hormones to increase the total number of eggs produced per reproductive cycle, and once the eggs have reached a certain level of maturity, the donor is placed under anesthesia and her eggs are retrieved. Following collection, donors are added to the bank's inventory, which you can search online.

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When searching for a donor, most people have a list of basic preferences to help them filter and narrow down the search.

My first filter was race.

I'm Irish-Arab-American, so my preference was for a caucasian donor. With those criteria entered, the pool of donors slimmed down slightly. My next filter surrounded education. The results slimmed down a smidge more. My final filter was for height. Height wasn't a deal-breaker, but I opted to look at donors 5-foot-10 and above, because why not?

Once I added my final filter, I had numerous donors to choose from. After careful consideration, and hemming and hawing over donors — reading bios and medical histories, listening to interviews donors provided — I finally chose who would go on to help create my child. It wasn't an easy choice, but something the donor said in his interview, about his desire to help, resonated with me. We also connected over striking similarities: We both come from musical families, share a background in event planning, and list Trey Parker and Matt Stone's 1999 classic "South Park: Bigger, Longer & Uncut" as our favorite movie.

For patients who must use a donor to begin their families, the process requires options, consideration, and a personal connection. But when you're a patient of color, the experience is vastly more limited.

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Black Americans have far fewer choices for donors

For Keesha, a first-grade teacher from Las Vegas, the road to motherhood has not been easy.

"We've been trying for a long time," Keesha told Insider. Like the other patients interviewed for this story, she asked to withhold her last name to protect her family's privacy. "We got pregnant naturally three times, but miscarried. My last pregnancy was in 2004, and fast forward to now, still nothing."

In that time, Keesha has seen numerous doctors, had one of her fallopian tubes removed, and has experienced heartbreak after heartbreak. One of the hardest blows came from a fertility specialist who recommended Keesha attempt IVF with donor eggs. Like most hopeful parents, Keesha and her husband Eric envisioned a child who would be a mix of the two of them.

Cryobanks have a diversity problem.Crystal Cox/Insider

Keesha pushed past her anger and disappointment and began the process of searching for an egg donor. There's no centralized, searchable database in the world of egg and sperm donors. Instead, patients get bank recommendations from fertility specialists or take it upon themselves to browse from bank to bank.

Similar to how my search began, Keesha started with filtering by race. As an African-American woman, Keesha wanted an African-American donor with a complexion similar to hers.

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After entering her race, the filter did not just narrow down the pool of potential donors, it nearly evaporated it.

I easily had at least 50 donors to choose from based on race. Keesha was given an option of two.

There was no hemming or hawing between donors for Keesha. No piles of medical history to thumb through. No variety for which to seek a deeper connection. Keesha was given two options. Her choices were this or that.

Preparing oocytes and observing their maturity.Getty

You can see firsthand the limitations in donor diversity by conducting a quick search on any cryobank site. In a recent review of the sperm donor registry of California Cryobank, there were 433 total donors listed: 260 were caucasian, 15 were African-American. The Egg Donor America results were a little better. It had more than 400 caucasian donors available. The category labeled "African" yielded 16 possible donors, and "African-American" turned up 100.

"It's been an issue since I started in this business in 1988," Dr. Michael Thomas, chief of the Division of Reproductive Endocrinology and Infertility at the University of Cincinnati College of Medicine. "It's very difficult for the African-American patient to find the breadth and depth of donors that caucasians would have. That's not good."

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Some donor patients with limited options end up going for someone who's biracial. When Cher from Indianapolis was preparing to start her family with her significant other, she learned they would need a sperm donor. As an African-American woman, her first instinct was not to search for donors within her race; it was to look outside of it.

"I was sure I wanted a white donor," she said. "It's a very true reality. A white person knows they have a level of comfort. You know when there is a physical aspect about you that gives you an edge. I knew being African-American was going to be hard for my kids."

Cher used a caucasian donor to give birth to twins, a girl and a boy.

The hospital identification bands, birth tag and umbilical cord clamp of Louise Brown, who in 1978 became the world's first baby to be born following successful IVF.DANIEL LEAL-OLIVAS/AFP via Getty Images

Keesha ultimately chose one of the two options she had. But the donor changed her mind at the last moment and backed out, leaving Keesha with an even tougher decision: She could either use the other African-American donor, who only had one frozen egg available, or choose a caucasian donor.

"Do I want a baby or not?" Keesha asked herself. "Do I go with someone who is close to my complexion? Or do I find someone who has ideals that are close to mine?"

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The answer to these questions can be found in a cryotank with four frozen embryos inside. The embryos are half Keesha's husband, and half a white, German donor.

It comes down to having the right donors

It's difficult to pinpoint where the problem with donor diversity begins.

Some argue it starts with the lack of diversity among fertility patients: African-Americans are more likely to experience fertility issues compared to caucasians but are less likely to seek treatment. Studies suggest socioeconomic factors and systemic biases surrounding referrals from OB/GYNs could be to blame.

Location is also an issue. According to Will Kiltz, communications director at CNY Fertility, sperm and egg banks are often located in neighborhoods with a lot of white people, leading to a "short supply of African-American, Asian, and Middle Eastern donors."

To the frustration of cryobanks, attempts to reach donors of color online is also a struggle.

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Frozen vials of sperm are seen preserved in an azote cooled container in a laboratory in Paris.REUTERS/Christian Hartmann

Scott Brown, vice president of strategic alliances for California Cryobank, told Insider that potential donors don't respond favorably to reachouts. And when people do respond, they often discourage other people from participating.

"We specifically advertise on Facebook to African-American donors," Brown told Insider. "When we do so, we get negative comments on those posts."

"We do this same thing for other ethnicities and do not get the same reaction as we do when marketing to African-American donors," he added.

The disconnect is deeply rooted in a storied history of validated mistrust. America's horrifying history of using Black people as medical research patients has had a lasting effect. Stories like the Tuskegee Experiment and Henrietta Lacks are well-known within African-American communities and have created a wedge of doubt between patients and medical treatment.

Brown said the comments online range from people assuming they won't be accepted based on weight or health restrictions to others saying the process is discriminatory for targeting potential donors with higher education experience.

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The preference for education comes from the consumer level. According to a 2016 study published in Economics & Human Biology, families in need of a sperm donor are quicker to reserve those with higher education qualifications. Whether this preference actually has any basis in science is up for debate. Research suggests that intelligence is influenced by genetics, but cognitive development is also heavily influenced by one's environment growing up.

Sperm samples in a cryobank.Evan Hurd/Corbis via Getty Images

Brown said he's attempted to connect with African-American donors at the university level to no avail.

"I have sent letters to Black student organizations at universities, and have gotten zero response from any of the letters," he said.

Keesha says cryobanks and health organizations haven't done a great job of informing Black Americans that the need for donors is high.

"My niece didn't know it was an option until I told her about it," she said.

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Fear of the unknown, and of family judgment, may also be a deterrent. Potential donors know "they would probably have to deal with their parents getting into their heads and asking why they are doing this," Keesha said.

"There is also that fear of doing something is taboo," she added.

Some members of minority groups have cultural hangups about infertility

Chanel G. is an egg donor based in Los Angeles. She has donated eggs six separate times, each time resulting in between 20 to 30 eggs. Each of those retrievals has resulted in a pregnancy.

Chanel does not know if the children are boys or girls, or any other specifics, and she is okay with that.

"I feel like I am the perfect egg donor," Chanel told Insider. "I never have symptoms, and I do not have any feelings that these are my kids. I am completely detached."

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Chanel is Chinese, another ethnicity with few sperm or egg donors. She learned about egg donation from a friend who had gone through the process and felt compelled to help parents trying to conceive.

A lab technician preparing a catheter for embryo transfer.Getty

But it's not something she shares with her family. She thinks cultural barriers would make them struggle to accept her decision.

"I think it has to do with bloodline stuff," Chanel said. "If someone had a sister who was willing to donate it would be fine; it's the fact that it's an outsider that makes it a big thing."

Keesha also suspects that fertility, in general, is a taboo topic within the African-American community.

"I think there is that stigma about being infertile, but nobody wants to talk about," Keesha said. "I haven't told anyone that I am using donor eggs. This shouldn't be my dirty little secret. I shouldn't be ashamed."

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A survey conducted by Fertility IQ found that Black women were roughly three times more likely than Caucasian women to believe their ability to conceive relied upon "religious faith" or "God's will." They were also less likely to view fertility as something dependent on a medical provider.

Lab assistant processing sperm, ready for egg fertilization, Before fertilization sperm is washed clean to separate it from any remaining bodily fluids.Universal Images Group via Getty Images

Part of the skepticism also comes from the wariness toward medical institutions, according to Thomas, the University of Cincinnati reproductive expert, who is Black.

"I think there is a hesitancy for women of color to undergo a surgical procedure, especially when they don't have the comfort level to why they are doing it," Thomas told Insider, adding: "This mistrust dates back to years and years. What will they do with my eggs? What will they do with my sperm?"

As for Keesha, she is currently in the process of preparing to transfer her frozen embryos sometime next month. While she's eager to take the steps forward, her journey has taken its toll with "stress, lots of stress, and heart palpitations," she said.

"Looking for the donor has been the hardest part of it all," Keesha added. "It's not just finding a donor, it's finding the right donor. You don't want to choose just anyone. I chose someone who seemed like she had a really good heart."

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After witnessing Keesha's struggles, Keesha's niece has decided that one day she will donate her eggs. While it's too close to home for Keesha to benefit from, her niece is hopeful she will be able to make a difference in another family's life.

At the very least, she can give them a choice.

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