SCOOP: Largest Cryobank in the U.S. to Offer Ancestry Testing
Sharon Kochlany and Vanessa Colimorio's four-year-old twin girls had a classic school assignment recently: make a family tree. They drew themselves and their one-year-old brother branching off from their moms, with aunts, uncles, and grandparents forking off to the sides.
The recently-gained sovereignty of queer families stands to be lost if a consumer DNA test brings a stranger's identity out of the woodwork.
What you don't see in the invisible space between Kochlany and Colimorio, however, is the sperm donor they used to conceive all three children.
To look at a family tree like this is to see in its purest form that kinship can supersede biology—the boundaries of where this family starts and stops are clear to everyone in it, in spite of a third party's genetic involvement. This kind of self-definition has always been synonymous with LGBTQ families, especially those that rely on donor gametes (sperm or eggs) to exist.
But the world around them has changed quite suddenly: The recent consumer DNA testing boom has made it more complicated than ever for families built through reproductive technology—openly, not secretively—to maintain the strong sense of autonomy and privacy that can be crucial for their emotional security. Prospective parents and cryobanks are now mulling how best to bring a new generation of donor-conceived people into this world in a way that leaves open the choice to know more about their ancestry without obliterating an equally important choice: the right not to know about biological relatives.
For queer parents who have long fought for social acceptance, having a biological relationship to their children has been revolutionary, and using an unknown donor as a means to this end especially so. Getting help from a friend often comes with the expectation that the friend will also have social involvement in the family, which some people are comfortable with, but being able to access sperm from an unknown donor—which queer parents have only been able to openly do since the early 1980s—grants them the reproductive autonomy to create families seemingly on their own. That recently-gained sovereignty stands to be lost if a consumer DNA test brings a stranger's identity out of the woodwork.
At the same time, it's natural for donor-conceived people to want to know more about where they come from ethnically, even if they don't want to know the identity of their donor. As a donor-conceived person myself, I know my donor's self-reported ethnicity, but have often wondered how accurate it is.
Opening the Pandora's box of a consumer DNA test as a way to find out has always felt profoundly unappealing to me, however. Many people have accidentally learned they're donor-conceived by unwittingly using these tools, but I already know that about myself going in, and subsequently know I'll be connected to a large web of people whose existence I'm not interested in learning about. In addition to possibly identifying my anonymous donor, his family could also show up, along with any donor-siblings—other people with whom I share a donor. My single lesbian mom is enough for me, and the trade off to learn more about my ethnic ancestry has never seemed worth it.
In 1992, when I was born, no one was planning for how consumer DNA tests might upend or illuminate one's sense of self. But the donor community has always had to stay nimble with balancing privacy concerns and psychological well-being, so it should come as no surprise that figuring out how to do so in 2020 includes finding a way to offer ancestry insight while circumventing consumer DNA tests.
A New Paradigm
This is the rationale behind unprecedented industry news that LeapsMag can exclusively break: Within the next few weeks, California Cryobank, the largest cryobank in the country, will begin offering genetically-verified ancestry information on the free public part of every donor's anonymous profile in its database, something no other cryobanks yet offer (an exact launch date was not available at the time of publication). Currently, California Cryobank's donor profiles include a short self-reported list that might merely say, "Ancestry: German, Lebanese, Scottish."
The new information will be a report in pie chart form that details exactly what percentages of a donor's DNA come from up to 26 ethnicities—it's analogous to, but on a smaller scale than, the format offered by consumer DNA testing companies, and uses the same base technology that looks for single nucleotide polymorphisms in DNA that are associated with specific ethnicities. But crucially, because the donor takes the DNA test through California Cryobank, not a consumer-facing service, the information is not connected in a network to anyone else's DNA test. It's also taken before any offspring exist so there's no chance of revealing a donor-conceived person's identity this way.
Later, when a donor-conceived person is born, grows up, and wants information about their ethnicity from the donor side, all they need is their donor's anonymous ID number to look it up. The donor-conceived person never takes a genetic test, and therefore also can't accidentally find donor siblings this way. People who want to be connected to donor siblings can use a sibling registry where other people who want to be found share donor ID numbers and look for matches (this is something that's been available for decades, and remains so).
"With genetic testing, you have no control over who reaches out to you, and at what point in your life."
California Cryobank will require all new donors to consent to this extra level of genetic testing, setting a new standard for what information prospective parents and donor-conceived people can expect to have. In the immediate, this information will be most useful for prospective parents looking for donors with specific backgrounds, possibly ones similar to their own.
It's a solution that was actually hiding in plain sight. Two years ago, California Cryobank's partner Sema4, the company handling the genetic carrier testing that's used to screen for heritable diseases, started analyzing ethnic data in its samples. That extra information was being collected because it can help calculate a more accurate assessment of genetic risks that run in certain populations—like Ashkenazi Jews and Tay Sachs disease—than relying on oral family histories. Shortly after a plan to start collecting these extra data, Jamie Shamonki, chief medical officer of California Cryobank, realized the companies would be sitting on a goldmine for a different reason.
"I didn't want to use one of these genetic testing companies like Ancestry to accomplish this," says Shamonki. "The whole thing we're trying to accomplish is also privacy."
Consumer-facing DNA testing companies are not HIPAA compliant (whereas Sema4, which isn't direct-to-consumer, is HIPAA compliant), which means there are no legal privacy protections covering people who add their DNA to these databases. Although some companies, like 23andMe, allow users to opt-out of being connected with genetic relatives, the language can be confusing to navigate, requires a high level of knowledge and self-advocacy on the user's part, and, as an opt-out system, is not set up to protect the user from unwanted information by default; many unwittingly walk right into such information as a result.
Additionally, because consumer-facing DNA testing companies operate outside the legal purview that applies to other health care entities, like hospitals, even a person who does opt-out of being linked to genetic relatives is not protected in perpetuity from being re-identified in the future by a change in company policy. The safest option for people with privacy concerns is to stay out of these databases altogether.
For California Cryobank, the new information about donor heritage won't retroactively be added to older profiles in the system, so donor-conceived people who already exist won't benefit from the ancestry tool, but it'll be the new standard going forward. The company has about 500 available donors right now, many of which have been in their registry for a while; about 100 of those donors, all new, will have this ancestry data on their profiles.
Shamonki says it has taken about two years to get to the point of publicly including ancestry information on a donor's profile because it takes about nine months of medical and psychological screening for a donor to go from walking through the door to being added to their registry. The company wanted to wait to launch until it could offer this information for a significant number of donors. As more new donors come online under the new protocol, the number with ancestry information on their profiles will go up.
For Parents: An Unexpected Complication
While this change will no doubt be welcome progress for LGBTQ families contemplating parenthood, it'll never be possible to put this entire new order back in the box. What are such families who already have donor-conceived children losing in today's world of widespread consumer genetic testing?
Kochlany and Colimorio's twins aren't themselves much older than the moment at-home DNA testing really started to take off. They were born in 2015, and two years later the industry saw its most significant spike. By now, more than 26 million people's DNA is in databases like 23andMe and Ancestry; as a result, it's estimated that within a year, 90 percent of Americans of European descent will be identifiable through these consumer databases, by way of genetic third cousins, even if they didn't want to be found and never took the test themselves. This was the principle behind solving the Golden State Killer cold case.
The waning of privacy through consumer DNA testing fundamentally clashes with the priorities of the cyrobank industry, which has long sought to protect the privacy of donor-conceived people, even as open identification became standard. Since the 1980s, donors have been able to allow their identity to be released to any offspring who is at least 18 and wants the information. Lesbian moms pushed for this option early on so their children—who would obviously know they couldn't possibly be the biological product of both parents—would never feel cut off from the chance to know more about themselves. But importantly, the openness is not a two-way street: the donors can't ever ask for the identities of their offspring. It's the latter that consumer DNA testing really puts at stake.
"23andMe basically created the possibility that there will be donors who will have contact with their donor-conceived children, and that's not something that I think the donor community is comfortable with," says I. Glenn Cohen, director of Harvard Law School's Center for Health Law Policy, Biotechnology & Bioethics. "That's about the donor's autonomy, not the rearing parents' autonomy, or the donor-conceived child's autonomy."
Kochlany and Colimorio have an open identification donor and fully support their children reaching out to California Cryobank to get more information about him if they want to when they're 18, but having a singular name revealed isn't the same thing as having contact, nor is it the same thing as revealing a web of dozens of extended genetic relations. Their concern now is that if their kids participate in genetic testing, a stranger—someone they're careful to refer to as only "the donor" and never "dad"—will reach out to the children to begin some kind of relationship. They know other people who are contemplating giving their children DNA tests, and feel staunchly that it wouldn't be right for their family.
"With genetic testing, you have no control over who reaches out to you, and at what point in your life," Kochlany says. "[People] reaching out and trying to say, 'Hey I know who your dad is' throws a curveball. It's like, 'Wait, I never thought I had a dad.' It might put insecurities in their minds."
"We want them to have the opportunity to choose whether or not they want to reach out," Colimorio adds.
Kochlany says that when their twins are old enough to start asking questions, she and Colimorio plan to frame it like this: "The donor was kind of like a technology that helped us make you a person, and make sure that you exist," she says, role playing a conversation with their kids. "But it's not necessarily that you're looking to this person [for] support or love, or because you're missing a piece."
It's a line in the sand that's present even for couples still far off from conceiving. When Mallory Schwartz, a film and TV producer in Los Angeles, and Lauren Pietra, a marriage and family therapy associate (and Shamonki's step-daughter), talk about getting married someday, it's a package deal with talking about how they'll approach having kids. They feel there are too many variables and choices to make around family planning as a same-sex couple these days to not have those conversations simultaneously. Consumer DNA databases are already on their minds.
"It frustrates me that the DNA databases are just totally unregulated," says Schwartz. "I hope they are by the time we do this. I think everyone deserves a right to privacy when making your family [using a sperm donor]."
"I wouldn't want to create a world where people who are donor-conceived feel like they can't participate in this technology because they're trying to shut out [other] information."
On the prospect of having a donor relation pop up non-consensually for a future child, Pietra says, "I don't like it. It would be really disappointing if the child didn't want [contact], and unfortunately they're on the receiving end."
You can see how important preserving the right to keep this door closed is when you look at what's going on at The Sperm Bank of California. This pioneering cryobank was the first in the world to openly serve LGBTQ people and single women, and also the first to offer the open identification option when it opened in 1982, but not as many people are asking for their donor's identity as expected.
"We're finding a third of young people are coming forward for their donor's identity," says Alice Ruby, executive director. "We thought it would be a higher number." Viewed the other way, two-thirds of the donor-conceived people who could ethically get their donor's identity through The Sperm Bank of California are not asking the cryobank for it.
Ruby says that part of what historically made an open identification program appealing, rather than invasive or nerve-wracking, is how rigidly it's always been formatted around mutual consent, and protects against surprises for all parties. Those [donor-conceived people] who wanted more information were never barred from it, while those who wanted to remain in the dark could. No one group's wish eclipsed the other's. The potential breakdown of a system built around consent, expectations, and respect for privacy is why unregulated consumer DNA testing is most concerning to her as a path for connecting with genetic relatives.
For the last few decades in cryobanks around the world, the largest cohort of people seeking out donor sperm has been lesbian couples, followed by single women. For infertile heterosexual couples, the smallest client demographic, Ruby says donor sperm offers a solution to a medical problem, but in contrast, it historically "provided the ability for [lesbian] couples and single moms to have some reproductive autonomy." Yes, it was still a solution to a biological problem, but it was also a solution to a social one.
The Sperm Bank of California updated its registration forms to include language urging parents, donor-conceived people, and donors not to use consumer DNA tests, and to go through the cryobank if they, understandably, want to learn more about who they're connected to. But truthfully, there's not much else cryobanks can do to protect clients on any side of the donor transaction from surprise contact right now—especially not from relatives of the donor who may not even know someone in their family has donated sperm.
A Tricky Position
Personally, I've known I was donor-conceived from day one. It has never been a source of confusion, angst, or curiosity, and in fact has never loomed particularly large for me in any way. I see it merely as a type of reproductive technology—on par with in vitro fertilization—that enabled me to exist, and, now that I do exist, is irrelevant. Being confronted with my donor's identity or any donor siblings would make this fact of my conception bigger than I need it to be, as an adult with a full-blown identity derived from all of my other life experiences. But I still wonder about the minutiae of my ethnicity in much the same way as anyone else who wonders, and feel there's no safe way for me to find out without relinquishing some of my existential independence.
The author and her mom in spring of 1998.
"People obviously want to participate in 23andMe and Ancestry because they're interested in knowing more about themselves," says Shamonki. "I wouldn't want to create a world where people who are donor-conceived feel like they can't participate in this technology because they're trying to shut out [other] information."
After all, it was the allure of that exact conceit—knowing more about oneself—that seemed to magnetically draw in millions of people to these tools in the first place. It's an experience that clearly taps into a population-wide psychic need, even—perhaps especially—if one's origins are a mystery.
Imagine eating a slice of cake for breakfast. It's deliciously indulgent, but instead of your blood sugar spiking, your body processes all that sweetness as a healthy high-protein meal. It may sound like sci-fi, but this scenario is not necessarily far off.
"People with diabetes could especially benefit because sweet proteins don't trigger a need for insulin."
The Lowdown
An award-winning agtech startup called Amai is developing "sweet proteins," based on the molecular structure of naturally occuring exotic fruits. These new sugar substitutes could potentially replace artificial sweeteners and help people who are trying to curb their sugar intake. People with diabetes could especially benefit because sweet proteins don't trigger a need for insulin.
While there is a sweet protein currently on the market today called thaumatin, it's expensive, has a short shelf life, and is lacking in the taste department. But Amai's proteins taste 70 to 100 percent identical to the sweet ones found in nature. Once their molecular structure is designed through a sophisticated computing platform, they are made through fermentation, which is akin to brewing beer. These non-GMO proteins are over 10,000 times sweeter than sugar, which means much less needs to be produced and used.
Diseases like diabetes and heart disease, which are often linked to sugar overconsumption, have been on a major upswing over the last few decades, especially in the United States. According to the CDC, 100 million adults in the United States are now living with diabetes or prediabetes, which if not treated, often leads to type 2 diabetes within five years. By 2030, scientists predict cases of diabetes in the U.S. will increase by 54 percent. If sugar proteins like the type Amai is creating become widely available, these numbers could begin to decrease.
Next Up
Amai's sweet proteins are still in the research and development stage, but the Israeli startup is raising significant funding that should help expedite the process. They're also substantially upping their production ability by expanding their facilities.
Will consumers be comfortable ingesting a lab-designed food product?
And in March, the USDA and FDA announced plans to regulate cell-cultured foods, the category in which these sugar proteins would fall, so Amai researchers are hopeful they'll have an easier path to approval once their product is market ready.
Open Questions
All this progress may sound promising, but Amai still has a long way to go before the reality of healthy cake becomes tangible. Some questions to consider: Will consumers be comfortable ingesting a lab-designed food product? Will it taste enough like real sugar?
And if some products and brands begin to adopt it, will it ever overtake the real thing in popularity and make a dent in diseases like diabetes and obesity? Only time, more research, and a lot more money will tell, but in the meantime, feel free to daydream about eating entire pints of ice cream without needing to hit the gym.
One of the World’s Most Famous Neuroscientists Wants You to Embrace Meditation and Spirituality
Neuroscientist, philosopher, and bestselling author Sam Harris is famous for many reasons, among them his vocal criticism of religion, his scientific approach to moral questions, and his willingness to tackle controversial topics on his popular podcast.
"Until you have some capacity to be mindful, you have no choice but to be lost in every next thought that arises."
He is also a passionate advocate of mindfulness meditation, having spent formative time as a young adult learning from teachers in India and Tibet before returning to the West.
Now his new app called Waking Up aims to teach the principles of meditation to anyone who is willing to slow down, turn away from everyday distractions, and pay attention to their own mind. Harris recently chatted with leapsmag about the science of mindfulness, the surprising way he discovered it, and the fundamental—but under-appreciated—reason to do it. This conversation has been lightly edited and condensed.
One of the biggest struggles that so many people face today is how to stay present in the moment. Is this the default state for human beings, or is this a more recent phenomenon brought on by our collective addiction to screens?
Sam: No, it certainly predates our technology. This is something that yogis have been talking about and struggling with for thousands of years. Just imagine you're on a beach on vacation where you vowed not to pick up your smart phone for 24 hours. You haven't looked at a screen, you're just enjoying the sound of the waves and the sunset, or trying to. What you're competing with there is this incessant white noise of discursive thinking. And that's something that follows you everywhere. It's something that people tend to only become truly sensitive to once they try to learn to meditate.
You've mentioned in one of your lessons that the more you train in mindful meditation, the more freedom you will have. What do you mean?
Sam: Well, until you have some capacity to be mindful, you have no choice but to be lost in every next thought that arises. You can't notice thought as thought, it just feels like you. So therefore, you're hostage to whatever the emotional or behavioral consequences of those thoughts are. If they're angry thoughts, you're angry. If they're desire thoughts, you're filled with desire. There is very little understanding in Western psychology around an alternative to that. And it's only by importing mindfulness into our thinking that we have begun to dimly see an alternative.
You've said that even if there were no demonstrable health benefits, it would still be valuable to meditate. Why?
Sam: Yeah, people are putting a lot of weight on the demonstrated health and efficiency benefits of mindfulness. I don't doubt that they exist, I think some of the research attesting to them is pretty thin, but it just may in fact be the case that meditation improves your immune system, and staves off dementia, or the thinning of the cortex as we age and many other benefits.
"What was Jesus talking about? Well, he certainly seemed to be talking about a state of mind that I first discovered on MDMA."
[But] it trivializes the real power of the practice. The power of the practice is to discover something fundamental about the nature of consciousness that can liberate you from psychological suffering in each moment that you can be aware of it. And that's a fairly esoteric goal and concern, it's an ancient one. It is something more than a narrow focus on physical health or even the ordinary expectations of well-being.
Yet many scientists in the West and intellectuals, like Richard Dawkins, are skeptical of it. Would you support a double-blind placebo-controlled study of meditation or does that miss the deeper point?
Sam: No, I see value in studying it any way we can. It's a little hard to pick a control condition that really makes sense. But yeah, that's research that I'm actually collaborating in now. There's a team just beginning a study of my app and we're having to pick a control condition. You can't do a true double-blind placebo control because meditation is not a pill, it's a practice. You know what you're being told to do. And if you're being told that you're in the control condition, you might be told to just keep a journal, say, of everything that happened to you yesterday.
One way to look at it is just to take people who haven't done any significant practice and to have them start and compare them to themselves over time using each person as his own control. But there are limitations with that as well. So, it's a little hard to study, but it's certainly not impossible.
And again, the purpose of meditation is not merely to reduce stress or to improve a person's health. And there are certain aspects to it which don't in any linear way reduce stress. You can have stressful experiences as you begin to learn to be mindful. You become more aware of your own neuroses certainly in the beginning, and you become more aware of your capacity to be petty and deceptive and self-deceptive. There are unflattering things to be realized about the character of your own mind. And the question is, "Is there a benefit ultimately to realizing those things?" I think there clearly is.
I'm curious about your background. You left Stanford to practice meditation after an experience with the drug MDMA. How did that lead you to meditation?
Sam: The experience there was that I had a feeling -- what I would consider unconditional love -- for the first time. Whether I ever had the concept of unconditional love in my head at that point, I don't know, I was 18 and not at all religious. But it was an experience that certainly made sense of the kind of language you find in many spiritual traditions, not just what it's like to be fully actualized by those, by, let's say, Christian values. Like, what was Jesus talking about? Well, he certainly seemed to be talking about a state of mind that I first discovered on MDMA. So that led me to religious literature, spiritual or new age literature, and Eastern philosophy.
Looking to make sense of this and put into a larger context that wasn't just synonymous with taking drugs, it was a sketching a path of practice and growth that could lead further across this landscape of mind, which I just had no idea existed. I basically thought you have whatever mind you have, and the prospect of having a radically different experience of consciousness, that would just be a fool's errand, and anyone who claimed to have such an experience would probably be lying.
As you probably know, there's a resurgence of research in psychedelics now, which again I also fully support, and I've had many useful experiences since that first one, on LSD and psilocybin. I don't tend to take those drugs now; it's been many years since I've done anything significant in that area, but the utility is that they work for everyone, more or less, which is to say that they prove beyond any doubt to everyone that it's possible to have a very different experience of consciousness moment to moment. Now, you can have scary experiences on some of these drugs, and I don't recommend them for everybody, but the one thing you can't have is the experience of boredom. [chuckle]
Very true. Going back to your experiences, you've done silent meditation for 18 hours a day with monks abroad. Do you think that kind of immersive commitment is an ideal goal, or is there a point where too much meditation is counter-productive to a full life?
Sam: I think all of those possibilities are true, depending on the person. There are people who can't figure out how to live a satisfying life in the world, and they retreat as a way of trying to untie the knot of their unhappiness directly through practice.
But the flip side is also true, that in order to really learn this skill deeply, most people need some kind of full immersion experience, at least at some point, to break through to a level of familiarity with it that would be very hard to get for most people practicing for 10 minutes a day, or an hour a day. But ultimately, I think it is a matter of practicing for short periods, frequently, more than it's a matter of long hours in one's daily life. If you could practice for one minute, 100 times a day, that would be an extraordinarily positive way to punctuate your habitual distraction. And I think probably better than 100 minutes all in one go first thing in the morning.
"It's amazing to me to walk into a classroom where you see 15 or 20 six-year-olds sitting in silence for 10 or 15 minutes."
What's your daily meditation practice like today? How does it fit into your routine?
Sam: It's super variable. There are days where I don't find any time to practice formally, there are days where it's very brief, and there are days where I'll set aside a half hour. I have young kids who I don't feel like leaving to go on retreat just yet, but I'm sure retreat will be a part of my future as well. It's definitely useful to just drop everything and give yourself permission to not think about anything for a certain period. And you're left with this extraordinarily vivid confrontation with your default state, which is your thoughts are incessantly appearing and capturing your attention and deluding you.
Every time you're lost in thought, you're very likely telling yourself a story for the 15th time that you don't even have the decency to find boring, right? Just imagine what it would sound like if you could broadcast your thoughts on a loud speaker, it would be mortifying. These are desperately boring, repetitive rehearsals of past conversations and anxieties about the future and meaningless judgments and observations. And in each moment that we don't notice a thought as a thought, we are deluded about what has happened. It's created this feeling of self that is a misconstrual of what consciousness is actually like, and it's created in most cases a kind of emotional emergency, which is our lives and all of the things we're worrying about. But our worry adds absolutely nothing to our capacity to deal with the problems when they actually arise.
Right. You mentioned you're a parent of a young kid, and so am I. Is there anything we as parents can do to encourage a mindfulness habit when our kids are young?
Sam: Actually, we just added meditations for kids in the app. My wife, Annaka, teaches meditation to kids as young as five in school. And they can absolutely learn to be mindful, even at that age. And it's amazing to me to walk into a classroom where you see 15 or 20 six-year-olds sitting in silence for 10 or 15 minutes, it's just amazing. And that's not what happens on the first day, but after five or six classes that is what happens. For a six-year-old to become aware of their emotional life in a clear way and to recognize that he was sad, or angry…that's a kind of super power. And it becomes a basis of any further capacity to regulate emotion and behavior.
It can be something that they're explicitly taught early and it can be something that they get modeled by us. They can know that we practice. You can just sit with your kid when your kid is playing. Just a few minutes goes a long way. You model this behavior and punctuate your own distraction for a short period of time, and it can be incredibly positive.
Lastly, a bonus question that is definitely tongue-in-cheek. Who would win in a fight, you or Ben Affleck?
Sam: That's funny. That question was almost resolved in the green room after that encounter. That was an unpleasant meeting…I spend some amount of time training in the martial arts. This is one area where knowledge does count for a lot, but I don't think we'll have to resolve that uncertainty any time soon. We're both getting old.
Kira Peikoff was the editor-in-chief of Leaps.org from 2017 to 2021. As a journalist, her work has appeared in The New York Times, Newsweek, Nautilus, Popular Mechanics, The New York Academy of Sciences, and other outlets. She is also the author of four suspense novels that explore controversial issues arising from scientific innovation: Living Proof, No Time to Die, Die Again Tomorrow, and Mother Knows Best. Peikoff holds a B.A. in Journalism from New York University and an M.S. in Bioethics from Columbia University. She lives in New Jersey with her husband and two young sons. Follow her on Twitter @KiraPeikoff.