Donor-conceived People Are Calling for Changes to an Unregulated Business

The process of shopping for a sperm donor with my wife was more exciting than I expected. We made a list of all the features we wanted and the things that were important to us (mental health issues run in both of our families, so we were hyper-aware of medical histories). It felt almost like online dating—reading through profiles and sifting through pictures of strangers, one of whom would help us start our family. We purchased sperm in 2015 and now have a wonderful 5-year-old son and 2-year-old daughter, but the complexity of using donor material to start a family revealed itself to me over time.

When we made our sperm purchase, we decided to select a donor with an open ID. Compared to anonymous donors, those with open ID allow a donor-conceived person (DCP) to seek contact when they turn 18. But I've come to learn that open ID really means "anonymous until 18"—and there is no guarantee that you will ever connect with the individual who gave sperm all those years ago, even though some banks work harder than others to make this happen. Once a donor-conceived person seeks contact, typically through the bank, it is up to the donor to decide if they want to be found. And in some cases, the donor hopes to remain anonymous forever.

Of course, new advances in technology like at-home DNA tests disrupt the decisions individuals made when they donated genetic material or started their families using these donations. But policies that would help donor-conceived families, like a federally run national registry tracking sperm, simply don't exist or aren't keeping up with the times. There are reputable banks which try to work in the best interest of the patients and keep them updated with specific information. But not all banks hold themselves to the same standards.

The fertility industry is projected to hit $15.4 billion by 2023. And about 30,000 to 60,000 children conceived by sperm donation are born in the U.S. each year, according to some estimates. Those who turn to sperm banks are typically looking at $1,000 per vial. It's also usually recommended that you purchase several vials so that you have multiple attempts at getting pregnant. Both donors and donor-created people are calling for changes to make the assisted reproduction process a safer and more ethical experience.

The Unregulated Sperm Donation Business

"There is a huge misconception about how well the industry is governed. In short—it's not—which is why it's been dubbed 'the Wild West,'" says Eve Wiley, a Dallas-based fertility fraud activist. "The American Society of Reproductive Medicine (ASRM) and Society of Assisted Reproductive Technologies (SART) are professional organizations that give guidelines and recommendations to follow; they are not requirements."

Wiley has been advocating to make fertility fraud a felony after her own experience: When she was a teen, Wiley learned she was donor-conceived and began to build a relationship with the man she thought was her biological father based on medical paperwork associated with the cryobank her mother used. Through genetic ID kits, though, she learned he wasn't her biological father—instead, her genetics matched those of her mother's fertility doctor. This doctor inseminated Wiley's mother with his sperm without any consent.

She isn't the only product of such fraud—there have been other cases of male fertility doctors using their own sperm to inseminate patients, including Indianapolis-based fertility doctor, Donald Cline, who now has dozens of offspring, and is the subject of the recently released Netflix documentary, Our Father. According to The Atlantic, Cline told patients in the late '70s and '80s he was using the sperm of medical residents, something that wasn't uncommon decades ago since there were no big sperm banks yet.

Wiley brought her case of fertility fraud to state legislatures. Through Wiley's fight, Texas became the first state to pass a bill in 2019 making it a criminal sexual assault for a doctor to inseminate a patient with sperm they did not consent to.

A lack of transparency

But fraudulent behavior from fertility doctors like these is just a small part of the puzzle. The lack of regulation of the sperm donor industry leads to lack of transparency. For my own daughter, I fear for her lack of knowledge around family history of breast and ovarian cancer. In 2011, a law went into effect in Washington giving donor-conceived people the right to their sperm donor's medical information even if they chose to remain anonymous. But that's not the case in most states. My daughter's sperm donor does not have to update the bank if his personal or family medical information changes.

"Policies are geared toward industry interests and the desires of intended parents; anonymity of donors is still the norm," says Jody Madeira, J.D., a professor of law at the Maurer School of Law and a leading legal expert on fertility frauds.

This shouldn't be the case. Anonymous donations have become illegal in other countries, including Australia, New Zealand, and the United Kingdom. The U.K.'s fertility watchdog, the Human Fertilisation and Embryology Authority (HFEA), is now also looking into lifting anonymity from birth instead of 18. "For the United States to take a similar approach, the culture and markets of assisted reproductive technology (ART) will have to radically change, shifting toward a children's rights perspective and away from intended parents' and industry interests," says Madeira.

There is also a lack of transparency around donor siblings. The ASRM recommends that banks limit 25 offspring per donor per population of 800,000. But there's no national registry keeping track of who is donating where, or how many live births per donor, making it nearly impossible to know how many biological siblings one may have and allowing donors to go to multiple sperm banks if they wanted to. Just look at Ari Nagel, dubbed the Sperminator, who famously has more than 60 biological children and counting from his donated sperm.

Lindsay Blount, a donor-conceived adult, says she currently has 22 siblings and reports gaining a new sibling via DNA testing about every three months. "My biological father sold his sperm for about 15 years. We likely have at least 100 siblings out there. It's incredibly unfair to think that I may never know all of my siblings," says Blount. "I often wonder if I've already met a sibling but never knew they were my brother or sister." The issue also affects generations to come. "My children now have 39 first cousins. What will happen when they get married? Do we need to DNA test them, so they don't have children with a possible first cousin?" adds Blount.

As for my family, we recently found out that our children have at least 25 biological siblings. One family lives 10 minutes from us.

Of course, not all experiences of families with donor-conceived children are the same and there are ways for families to protect themselves. Jana M. Rupnow, LPC, a Texas-based fertility counselor specializing in donor conception, encourages parents-to-be to advocate for themselves. "Parents can use their purchasing power to force change," says Rupnow, author of Three Makes Baby. "Parents can interview multiple sperm banks to find out how they track and limit the number of siblings born to one donor. They can also request identifiable donors...Choose a bank that operates with transparency."

What Donor-conceived Children Hope For

For several decades after the first cryobank was started in the U.S. in the 1970s, it was the norm to keep sperm donation a secret. That's been changing in an age of accessible DNA tests, but donor-conceived people shouldn't have to rely on technology to get answers.

We Are Donor Conceived, an organization formed in 2016 to give a voice to the DCP community, released a survey in 2020 finding 81 percent of them believe anonymous donation agreements should be abolished while 92 percent agree with the statement, "The ART industry has a responsibility to act in the best interest of the people it helps to create."

In 2019, donor-conceived and surrogate-born people also spoke at the 30th Anniversary of the UN Convention on the Rights of the Child urging for the right to "access information about their identity and origins" and to "ensure that comprehensive and complete records of all parties involved in the conception of the child" be available.

For changes to happen, donor-conceived people need to be heard and acknowledged. When The Atlantic asked Sean Tipton, chief advocacy and policy officer of the ASRM, whether the organization plans to engage with the donor-conceived community, he said they "very well might," but wasn't sure they were the correct people to engage with since they aren't patients. He told the publication that "a 30-year-old, donor-conceived person in 2021—is that the right person to consult about somebody who's going through the process now?"

For many donor-conceived people, they believe they are.

"We are already here, and we can't change how things happened for us," says Blount. "But we can help this next generation of DCP grow up with the support to celebrate and honor both sides of their identities."

Genavieve Jaffe is an LGBTQ+ mom, lawyer, activist, and content creator. She is the founder of connecting rainbows, which is an organization that provides free legal and fertility resources to the LGTBQ+ community as their legal needs are different and she found that not many lawyers are well-equipped to work with the community.