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.”
The Friday Five Weekly Roundup in Health Research
In this week's Friday Five, the right facial expression for your mental health. Plus, can virtual reality reduce pain? Lab made blood vessels. Gene editing muscles to lower blood sugar. And a magic ingredient coming from exhaust vents.
The Friday Five covers five stories in research that you may have missed this week. There are plenty of controversies and troubling ethical issues in science – and we get into many of them in our online magazine – but this news roundup focuses on scientific creativity and progress to give you a therapeutic dose of inspiration headed into the weekend.
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Here are the promising studies covered in this week's Friday Five:
- The right facial expression for your mental health
- Can virtual reality reduce pain?
- Lab made blood vessels
- Gene editing muscles to lower blood sugar
- A magic ingredient coming from exhaust vents
Leaders at Google and other companies are trying to get workers to return to the office, saying remote and hybrid work disrupt work-life boundaries and well-being. These arguments conflict with research on remote work and wellness.
Many leaders at top companies are trying to get workers to return to the office. They say remote and hybrid work are bad for their employees’ mental well-being and lead to a sense of social isolation, meaninglessness, and lack of work-life boundaries, so we should just all go back to office-centric work.
One example is Google, where the company’s leadership is defending its requirement of mostly in-office work for all staff as necessary to protect social capital, meaning people’s connections to and trust in one another. That’s despite a survey of over 1,000 Google employees showing that two-thirds feel unhappy about being forced to work in the office three days per week. In internal meetings and public letters, many have threatened to leave, and some are already quitting to go to other companies with more flexible options.
Last month, GM rolled out a policy similar to Google’s, but had to backtrack because of intense employee opposition. The same is happening in some places outside of the U.S. For instance, three-fifths of all Chinese employers are refusing to offer permanent remote work options, according to a survey this year from The Paper.
For their claims that remote work hurts well-being, some of these office-centric traditionalists cite a number of prominent articles. For example, Arthur Brooks claimed in an essay that “aggravation from commuting is no match for the misery of loneliness, which can lead to depression, substance abuse, sedentary behavior, and relationship damage, among other ills.” An article in Forbes reported that over two-thirds of employees who work from home at least part of the time had trouble getting away from work at the end of the day. And Fast Company has a piece about how remote work can “exacerbate existing mental health issues” like depression and anxiety.
For his part, author Malcolm Gladwell has also championed a swift return to the office, saying there is a “core psychological truth, which is we want you to have a feeling of belonging and to feel necessary…I know it’s a hassle to come into the office, but if you’re just sitting in your pajamas in your bedroom, is that the work life you want to live?”
These arguments may sound logical to some, but they fly in the face of research and my own experience as a behavioral scientist and as a consultant to Fortune 500 companies. In these roles, I have seen the pitfalls of in-person work, which can be just as problematic, if not more so. Remote work is not without its own challenges, but I have helped 21 companies implement a series of simple steps to address them.
Research finds that remote work is actually better for you
The trouble with the articles described above - and claims by traditionalist business leaders and gurus - stems from a sneaky misdirection. They decry the negative impact of remote and hybrid work for wellbeing. Yet they gloss over the damage to wellbeing caused by the alternative, namely office-centric work.
It’s like comparing remote and hybrid work to a state of leisure. Sure, people would feel less isolated if they could hang out and have a beer with their friends instead of working. They could take care of their existing mental health issues if they could visit a therapist. But that’s not in the cards. What’s in the cards is office-centric work. That means the frustration of a long commute to the office, sitting at your desk in an often-uncomfortable and oppressive open office for at least 8 hours, having a sad desk lunch and unhealthy snacks, sometimes at an insanely expensive cost and, for making it through this series of insults, you’re rewarded with more frustration while commuting back home.
In a 2022 survey, the vast majority of respondents felt that working remotely improved their work-life balance. Much of that improvement stemmed from saving time due to not needing to commute and having a more flexible schedule.
So what happens when we compare apples to apples? That’s when we need to hear from the horse’s mouth: namely, surveys of employees themselves, who experienced both in-office work before the pandemic, and hybrid and remote work after COVID struck.
Consider a 2022 survey by Cisco of 28,000 full-time employees around the globe. Nearly 80 percent of respondents say that remote and hybrid work improved their overall well-being: that applies to 83 percent of Millennials, 82 percent of Gen Z, 76 percent of Gen Z, and 66 percent of Baby Boomers. The vast majority of respondents felt that working remotely improved their work-life balance.
Much of that improvement stemmed from saving time due to not needing to commute and having a more flexible schedule: 90 percent saved 4 to 8 hours or more per week. What did they do with that extra time? The top choice for almost half was spending more time with family, friends and pets, which certainly helped address the problem of isolation from the workplace. Indeed, three-quarters of them report that working from home improved their family relationships, and 51 percent strengthened their friendships. Twenty percent used the freed up hours for self-care.
Of the small number who report their work-life balance has not improved or even worsened, the number one reason is the difficulty of disconnecting from work, but 82 percent report that working from anywhere has made them happier. Over half say that remote work decreased their stress levels.
Other surveys back up Cisco’s findings. For example, a 2022 Future Forum survey compared knowledge workers who worked full-time in the office, in a hybrid modality, and fully remote. It found that full-time in-office workers felt the least satisfied with work-life balance, hybrid workers were in the middle, and fully remote workers felt most satisfied. The same distribution applied to questions about stress and anxiety. A mental health website called Tracking Happiness found in a 2022 survey of over 12,000 workers that fully remote employees report a happiness level about 20 percent greater than office-centric ones. Another survey by CNBC in June found that fully remote workers are more often very satisfied with their jobs than workers who are fully in-person.
Academic peer-reviewed research provides further support. Consider a 2022 study published in the International Journal of Environmental Research and Public Health of bank workers who worked on the same tasks of advising customers either remotely or in-person. It found that fully remote workers experienced higher meaningfulness, self-actualization, happiness, and commitment than in-person workers. Another study, published by the National Bureau of Economic Research, reported that hybrid workers, compared to office-centric ones, experienced higher satisfaction with work and had 35 percent more job retention.
What about the supposed burnout crisis associated with remote work? Indeed, burnout is a concern. A survey by Deloitte finds that 77 percent of workers experienced burnout at their current job. Gallup came up with a slightly lower number of 67 percent in its survey. But guess what? Both of those surveys are from 2018, long before the era of widespread remote work.
By contrast, in a Gallup survey in late 2021, 58 percent of respondents reported less burnout. An April 2021 McKinsey survey found burnout in 54 percent of Americans and 49 percent globally. A September 2021 survey by The Hartford reported 61 percent burnout. Arguably, the increase in full or part-time remote opportunities during the pandemic helped to address feelings of burnout, rather than increasing them. Indeed, that finding aligns with the earlier surveys and peer-reviewed research suggesting remote and hybrid work improves wellbeing.
Remote work isn’t perfect – here’s how to fix its shortcomings
Still, burnout is a real problem for hybrid and remote workers, as it is for in-office workers. Employers need to offer mental health benefits with online options to help employees address these challenges, regardless of where they’re working.
Moreover, while they’re better overall for wellbeing, remote and hybrid work arrangements do have specific disadvantages around work-life separation. To address work-life issues, I advise my clients who I helped make the transition to hybrid and remote work to establish norms and policies that focus on clear expectations and setting boundaries.
For working at home and collaborating with others, there’s sometimes an unhealthy expectation that once you start your workday in your home office chair, and that you’ll work continuously while sitting there.
Some people expect their Slack or Microsoft Teams messages to be answered within an hour, while others check Slack once a day. Some believe email requires a response within three hours, and others feel three days is fine. As a result of such uncertainty and lack of clarity about what’s appropriate, too many people feel uncomfortable disconnecting and not replying to messages or doing work tasks after hours. That might stem from a fear of not meeting their boss’s expectations or not wanting to let their colleagues down.
To solve this problem, companies need to establish and incentivize clear expectations and boundaries. They should develop policies and norms around response times for different channels of communication. They also need to clarify work-life boundaries – for example, the frequency and types of unusual circumstances that will require employees to work outside of regular hours.
Moreover, for working at home and collaborating with others, there’s sometimes an unhealthy expectation that once you start your workday in your home office chair, and that you’ll work continuously while sitting there (except for your lunch break). That’s not how things work in the office, which has physical and mental breaks built in throughout the day. You took 5-10 minutes to walk from one meeting to another, or you went to get your copies from the printer and chatted with a coworker on the way.
Those and similar physical and mental breaks, research shows, decrease burnout, improve productivity, and reduce mistakes. That’s why companies should strongly encourage employees to take at least a 10-minute break every hour during remote work. At least half of those breaks should involve physical activity, such as stretching or walking around, to counteract the dangerous effects of prolonged sitting. Other breaks should be restorative mental activities, such as meditation, brief naps, walking outdoors, or whatever else feels restorative to you.
To facilitate such breaks, my client organizations such as the University of Southern California’s Information Sciences Institute shortened hour-long meetings to 50 minutes and half-hour meetings to 25 minutes, to give everyone – both in-person and remote workers – a mental and physical break and transition time.
Very few people will be reluctant to have shorter meetings. After that works out, move to other aspects of setting boundaries and expectations. Doing so will require helping team members get on the same page and reduce conflicts and tensions. By setting clear expectations, you’ll address the biggest challenge for wellbeing for remote and hybrid work: establishing clear work-life boundaries.