Should egg and sperm donors reveal their identities? The debate pivots on genetics and medical history.
Cassandra Adams performs on stage at the Jersey City Theater Center in March 2019 to raise awareness about traumatic experiences that she and others have had with anonymous donor conception.
Until age 35, Cassandra Adams assumed her mother and father were her biological parents. Then she took saliva tests through two genealogy databases—23andMe and AncestryDNA—and discovered a discrepancy in her heritage. In bringing up the matter with her parents, she learned that fertility issues had led the couple to use a sperm donor.
“Most people my age were not told,” said Adams, now 40 and a stay-at-home mom in Jersey City, New Jersey, who is involved with donor-conception advocacy. “Even now, there’s still a lot of secrecy in the industry. There are still many parents who aren’t truthful or planning not to be truthful with their children.”
While some of those offspring may never know a significant part of their medical history, Adams is grateful that she does. Surprisingly, the DNA test revealed Jewish ancestry.
“There are a lot more genetic conditions that run in Jewish families, so it was really important that I get my medical history, because it’s very different from my dad who raised me,” said Adams, who has met her biological father and two of three known half-siblings. As a result of this experience, she converted to Judaism. “It has been a big journey,” she said.
In an era of advancing assisted reproduction technologies, genetics and medical history have become front and center of the debate as to whether or not egg and sperm donations should be anonymous – and whether secrecy is even possible in many cases.
Obstacles to staying anonymous
People looking to become parents can choose what’s called an “identity-release donor,” meaning their child can receive information about the donor when he or she turns 18. There’s no way to ensure that the donor will consent to a relationship at that time. Instead, if a relationship between the donor and child is a priority, parents may decide to use a known donor.
The majority of donors want to remain anonymous, said reproductive endocrinologist Robert Kiltz, founder and director of CNY Fertility in Syracuse, New York. “In general, egg and sperm donation is mostly anonymous, meaning the recipient doesn’t know the donor and the donor doesn’t know the recipient.”
Even if the donor isn’t disclosed, though, the mystery may become unraveled when a donor-conceived person undergoes direct-to-consumer genetic testing through ancestry databases, which are growing in number and popularity. These services offer DNA testing and links to relatives with identifiable information.
In the future, another obstacle to anonymity could be laws that prohibit anonymous sperm and egg donations, if they catch on. In June, Colorado became the first state in the nation to ban anonymous sperm and egg donations. The law, which takes effect in 2025, will give donor-conceived adults the legal authority to obtain their donor’s identity and medical history. It also requires banks that provide sperm and egg collection to keep current medical records and contact information for all donors. Meanwhile, it prohibits donations from those who won’t consent to identity disclosures.
“The tradition of anonymous sperm or egg donation has created a vast array of problems, most significantly that the people thus created want to know who their mommy and daddy are,” said Kenneth W. Goodman, professor and director of the Institute for Bioethics and Health Policy at the University of Miami Miller School of Medicine.
“There are counter arguments on both sides. But the current situation has led to great uncertainty and, in many cases, grief,” Goodman said.
Donors should bear some moral responsibility for their role in reproduction by allowing their identity to be disclosed to donor-conceived individuals when they turn 18, Goodman added, noting that “there are counter arguments on both sides. But the current situation has led to great uncertainty and, in many cases, grief.”
Adams, the Jersey City woman who learned she was Jewish, has channeled these feelings into several works of art and performances on stage at venues such as the Jersey City Theater Center. During these performances, she describes the trauma of “not knowing where we come from [or] who we look like.”
In the last five years, Kathleen “Casey” DiPaola, a lawyer in Albany, New York, who focuses her practice on adoption, assisted reproduction and surrogacy, has observed a big shift toward would-be parents looking to use known sperm donors. On the other hand, with egg donation, “I’m not seeing a whole lot of change,” she said. Compared to sperm donation, more medical screening is involved with egg donation, so donors are primarily found through fertility clinics and egg donor agencies that prefer anonymity. This leads to fewer options for prospective parents seeking an egg donor with disclosed identity, DiPaola said.
Some donors want to keep in touch
Rachel Lemmons, 32, who lives in Denver, grew interested in becoming an egg donor when, as a graduate student in environmental sciences, she saw an online advertisement. “It seemed like a good way to help pay off my student loan debt,” said Lemmons, who is married and has a daughter who will turn 2-years-old in December. She didn’t end up donating until many years later, after she’d paid off the debt. “The primary motivation at that point wasn’t financial,” she said. “Instead, it felt like a really wonderful way to help someone else have a family in a few weeks’ time.”
Lemmons originally donated anonymously because she didn’t know open donations existed. She was content with that until she became aware of donor-conceived individuals’ struggles. “It concerned me that I could potentially be contributing to this,” she said, adding that the egg donor and surrogacy agency and fertility clinic wouldn’t allow her to disclose her identity retroactively.
Since then, she has donated as an open donor, and kept in touch with the recipients through email and video calls. Knowing that they were finally able to have children is “incredibly rewarding,” Lemmons said.
When to tell the kids
Stanton Honig, professor of urology and division chief of sexual and reproductive medicine at Yale School of Medicine, said for years his team has recommended that couples using donor sperm inform children about the role of the donor and their identity. “Honesty is always the best policy, and it is likely that when they become of age, they might or will be able to find out about their biological sperm donor,” he said. “Hiding it creates more of a complicated situation for children in the long run.”
Amy Jones, a 45-year-old resident of Syracuse, N.Y., has three children, including twins, who know they were conceived with anonymous donor eggs from the same individual, so they share the same genetics. Jones, who is a registered nurse and asked for her real name not to be published, told them around age seven.
“The thought of using a known donor brought more concerns—what if she wanted my babies after they were born, or how would I feel if she treated them as her own every time I saw her?” said Jones.
“I did a lot of reading, and all psychologists said that it is best to start the conversation early,” she recalled. “They understood very little of what I was telling them, but through the years, I have brought it up in discussion and encouraged them to ask questions. To this day, they don't seem to be all that interested, but I expect that later on in life they may have more questions.”
Jones and her husband opted to use a donor because premature ovarian failure at age 27 had rendered her infertile. “The decision to use an egg donor was hard enough,” she said. “The thought of using a known donor brought more concerns—what if she wanted my babies after they were born, or how would I feel if she treated them as her own every time I saw her?”
Susan C. Klock, a clinical psychologist in the section of fertility and reproductive medicine at Northwestern University Feinberg School of Medicine, said, “Anonymity is virtually impossible in the age of direct-to-consumer genetic testing.” In addition, “selecting an identity-release donor is typically not the first thing parents are looking at when they select a donor. First and foremost, they are looking for a donor with a healthy medical background. Then they may consider donor characteristics that resemble the parents.”
The donor’s medical history can be critical
Donor agencies rely on the self-reported medical history of egg and sperm donors, which can lead to gaps in learning important information. Knowing a donor’s medical history may have led some families to make different or more well-informed choices.
After Steven Gunner, a donor-conceived adult, suffered from schizophrenia and died of a drug overdose at age 27 in 2020, his parents, who live in New York, learned of a potential genetic link to his mental illness. A website, Donor Sibling Registry, revealed that the sperm donor the couple had used, a college student at the time of donation, had been hospitalized during childhood for schizophrenia and died of a drug overdose at age 46. Gunner’s story inspired Steven’s Law, a bill that was introduced in Congress in July. If passed, it would mandate sperm banks to collect information on donors’ medical conditions, and donors would have to disclose medical information the banks weren’t able to find.
With limited exceptions, the U.S. Food and Drug Administration requires donors to be screened and tested for relevant communicable disease agents and diseases such as HIV, hepatitis viruses B and C, the Zika virus and several STDs. With current technology, it is also impossible to screen for thousands of rare genetic diseases. “If a couple is using IVF (in vitro fertilization) to conceive with the donor gamete, some may opt for pre-implantation genetic testing to assess for chromosomal abnormalities,” Klock said.
Even these precautions wouldn't cover every disease, and some would-be parents don't get the genetic screening. In a situation where one donor has a large number of offspring, it is concerning that he or she can spread a rare disease to multiple people, said Nick Isel, 37, of Yorkville, Illinois, who was conceived with donor sperm due to his parents’ fertility issues. They told him the truth when he was a teenager, and he found his biological father with a journalist’s help.
Since 2016, Isel, who owns a roofing company, has been petitioning the FDA to extend the retention of medical records, requiring the fertility establishment to maintain information on sperm and egg donors for 50 years instead of the current 10-year mandate.
“The lack of family health information,” he said, “is an ongoing, slow-motion public health crisis since donor conception began being regulated by the FDA as a practice.”
A newly discovered brain cell may lead to better treatments for cognitive disorders
Swiss researchers have found a type of brain cell that appears to be a hybrid of the two other main types — and it could lead to new treatments for brain disorders.
Swiss researchers have discovered a third type of brain cell that appears to be a hybrid of the two other primary types — and it could lead to new treatments for many brain disorders.
The challenge: Most of the cells in the brain are either neurons or glial cells. While neurons use electrical and chemical signals to send messages to one another across small gaps called synapses, glial cells exist to support and protect neurons.
Astrocytes are a type of glial cell found near synapses. This close proximity to the place where brain signals are sent and received has led researchers to suspect that astrocytes might play an active role in the transmission of information inside the brain — a.k.a. “neurotransmission” — but no one has been able to prove the theory.
A new brain cell: Researchers at the Wyss Center for Bio and Neuroengineering and the University of Lausanne believe they’ve definitively proven that some astrocytes do actively participate in neurotransmission, making them a sort of hybrid of neurons and glial cells.
According to the researchers, this third type of brain cell, which they call a “glutamatergic astrocyte,” could offer a way to treat Alzheimer’s, Parkinson’s, and other disorders of the nervous system.
“Its discovery opens up immense research prospects,” said study co-director Andrea Volterra.
The study: Neurotransmission starts with a neuron releasing a chemical called a neurotransmitter, so the first thing the researchers did in their study was look at whether astrocytes can release the main neurotransmitter used by neurons: glutamate.
By analyzing astrocytes taken from the brains of mice, they discovered that certain astrocytes in the brain’s hippocampus did include the “molecular machinery” needed to excrete glutamate. They found evidence of the same machinery when they looked at datasets of human glial cells.
Finally, to demonstrate that these hybrid cells are actually playing a role in brain signaling, the researchers suppressed their ability to secrete glutamate in the brains of mice. This caused the rodents to experience memory problems.
“Our next studies will explore the potential protective role of this type of cell against memory impairment in Alzheimer’s disease, as well as its role in other regions and pathologies than those explored here,” said Andrea Volterra, University of Lausanne.
But why? The researchers aren’t sure why the brain needs glutamatergic astrocytes when it already has neurons, but Volterra suspects the hybrid brain cells may help with the distribution of signals — a single astrocyte can be in contact with thousands of synapses.
“Often, we have neuronal information that needs to spread to larger ensembles, and neurons are not very good for the coordination of this,” researcher Ludovic Telley told New Scientist.
Looking ahead: More research is needed to see how the new brain cell functions in people, but the discovery that it plays a role in memory in mice suggests it might be a worthwhile target for Alzheimer’s disease treatments.
The researchers also found evidence during their study that the cell might play a role in brain circuits linked to seizures and voluntary movements, meaning it’s also a new lead in the hunt for better epilepsy and Parkinson’s treatments.
“Our next studies will explore the potential protective role of this type of cell against memory impairment in Alzheimer’s disease, as well as its role in other regions and pathologies than those explored here,” said Volterra.
Researchers claimed they built a breakthrough superconductor. Social media shot it down almost instantly.
In July, South Korean scientists posted a paper finding they had achieved superconductivity - a claim that was debunked within days.
Harsh Mathur was a graduate physics student at Yale University in late 1989 when faculty announced they had failed to replicate claims made by scientists at the University of Utah and the University of Wolverhampton in England.
Such work is routine. Replicating or attempting to replicate the contraptions, calculations and conclusions crafted by colleagues is foundational to the scientific method. But in this instance, Yale’s findings were reported globally.
“I had a ringside view, and it was crazy,” recalls Mathur, now a professor of physics at Case Western Reserve University in Ohio.
Yale’s findings drew so much attention because initial experiments by Stanley Pons of Utah and Martin Fleischmann of Wolverhampton led to a startling claim: They were able to fuse atoms at room temperature – a scientific El Dorado known as “cold fusion.”
Nuclear fusion powers the stars in the universe. However, star cores must be at least 23.4 million degrees Fahrenheit and under extraordinary pressure to achieve fusion. Pons and Fleischmann claimed they had created an almost limitless source of power achievable at any temperature.
Like fusion, superconductivity can only be achieved in mostly impractical circumstances.
But about six months after they made their startling announcement, the pair’s findings were discredited by researchers at Yale and the California Institute of Technology. It was one of the first instances of a major scientific debunking covered by mass media.
Some scholars say the media attention for cold fusion stemmed partly from a dazzling announcement made three years prior in 1986: Scientists had created the first “superconductor” – material that could transmit electrical current with little or no resistance. It drew global headlines – and whetted the public’s appetite for announcements of scientific breakthroughs that could cause economic transformations.
But like fusion, superconductivity can only be achieved in mostly impractical circumstances: It must operate either at temperatures of at least negative 100 degrees Fahrenheit, or under pressures of around 150,000 pounds per square inch. Superconductivity that functions in closer to a normal environment would cut energy costs dramatically while also opening infinite possibilities for computing, space travel and other applications.
In July, a group of South Korean scientists posted material claiming they had created an iron crystalline substance called LK-99 that could achieve superconductivity at slightly above room temperature and at ambient pressure. The group partners with the Quantum Energy Research Centre, a privately-held enterprise in Seoul, and their claims drew global headlines.
Their work was also debunked. But in the age of internet and social media, the process was compressed from half-a-year into days. And it did not require researchers at world-class universities.
One of the most compelling critiques came from Derrick VanGennep. Although he works in finance, he holds a Ph.D. in physics and held a postdoctoral position at Harvard. The South Korean researchers had posted a video of a nugget of LK-99 in what they claimed was the throes of the Meissner effect – an expulsion of the substance’s magnetic field that would cause it to levitate above a magnet. Unless Hollywood magic is involved, only superconducting material can hover in this manner.
That claim made VanGennep skeptical, particularly since LK-99’s levitation appeared unenthusiastic at best. In fact, a corner of the material still adhered to the magnet near its center. He thought the video demonstrated ferromagnetism – two magnets repulsing one another. He mixed powdered graphite with super glue, stuck iron filings to its surface and mimicked the behavior of LK-99 in his own video, which was posted alongside the researchers’ video.
VanGennep believes the boldness of the South Korean claim was what led to him and others in the scientific community questioning it so quickly.
“The swift replication attempts stemmed from the combination of the extreme claim, the fact that the synthesis for this material is very straightforward and fast, and the amount of attention that this story was getting on social media,” he says.
But practicing scientists were suspicious of the data as well. Michael Norman, director of the Argonne Quantum Institute at the Argonne National Laboratory just outside of Chicago, had doubts immediately.
Will this saga hurt or even affect the careers of the South Korean researchers? Possibly not, if the previous fusion example is any indication.
“It wasn’t a very polished paper,” Norman says of the Korean scientists’ work. That opinion was reinforced, he adds, when it turned out the paper had been posted online by one of the researchers prior to seeking publication in a peer-reviewed journal. Although Norman and Mathur say that is routine with scientific research these days, Norman notes it was posted by one of the junior researchers over the doubts of two more senior scientists on the project.
Norman also raises doubts about the data reported. Among other issues, he observes that the samples created by the South Korean researchers contained traces of copper sulfide that could inadvertently amplify findings of conductivity.
The lack of the Meissner effect also caught Mathur’s attention. “Ferromagnets tend to be unstable when they levitate,” he says, adding that the video “just made me feel unconvinced. And it made me feel like they hadn't made a very good case for themselves.”
Will this saga hurt or even affect the careers of the South Korean researchers? Possibly not, if the previous fusion example is any indication. Despite being debunked, cold fusion claimants Pons and Fleischmann didn’t disappear. They moved their research to automaker Toyota’s IMRA laboratory in France, which along with the Japanese government spent tens of millions of dollars on their work before finally pulling the plug in 1998.
Fusion has since been created in laboratories, but being unable to reproduce the density of a star’s core would require excruciatingly high temperatures to achieve – about 160 million degrees Fahrenheit. A recently released Government Accountability Office report concludes practical fusion likely remains at least decades away.
However, like Pons and Fleischman, the South Korean researchers are not going anywhere. They claim that LK-99’s Meissner effect is being obscured by the fact the substance is both ferromagnetic and diamagnetic. They have filed for a patent in their country. But for now, those claims remain chimerical.
In the meantime, the consensus as to when a room temperature superconductor will be achieved is mixed. VenGennep – who studied the issue during his graduate and postgraduate work – puts the chance of creating such a superconductor by 2050 at perhaps 50-50. Mathur believes it could happen sooner, but adds that research on the topic has been going on for nearly a century, and that it has seen many plateaus.
“There's always this possibility that there's going to be something out there that we're going to discover unexpectedly,” Norman notes. The only certainty in this age of social media is that it will be put through the rigors of replication instantly.