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.
With Mentors, Models, and #MeToo, Femtech Comes of Age
In her quest to become a tech entrepreneur, Stacy Chin has been an ace at tackling thorny intellectual challenges, mastering everything from molecules to manufacturing.
These mostly female leaders of firms with products addressing women's health concerns are winning in a big way, raising about $1.1 billion in startup funds over the past few years.
But the 28-year-old founder of HydroGlyde Coatings, based in Worcester, Mass., admitted to being momentarily stumped recently when pitching her product – a new kind of self-lubricating condom – to venture capitalists.
"Being a young female scientist and going into that sexual healthcare space, it was definitely a little bit challenging to learn how to navigate during presentations and pitches when there were a lot of older males in the audience," said Chin, whose product is of special appeal to older women suffering from vaginal dryness. "I eventually figured it out, but it wasn't easy."
Chin is at the vanguard of a new generation of "femtech" entrepreneurs heading companies with names like LOLA Tampons, Prelude Fertility, and Peach, bringing once-taboo topics like menstruation, ovulation, incontinence, breastfeeding, pelvic pain and, yes, female sexual pleasure to the highest chambers of finance. These mostly female leaders of firms with products addressing women's health concerns are winning in a big way, raising about $1.1 billion in startup funds over the past few years, according to the New York data analytics firm CB Insights.
"We are definitely at a watershed moment for femtech. But we need to remember that [it's] an overnight sensation that is decades in the making."
If the question is "Why now?", the answer may be that femtech leaders are benefiting from the current conversations around respect for women in the workplace, and long-term efforts to achieve gender equality in the male-dominated tech industry.
"We are definitely at a watershed moment for femtech," said Rachel Braun Scherl, a self-described "vaginepreneur" whose new book, "Orgasmic Leadership," profiles femtech leaders. "But we need to remember that femtech is an overnight sensation that is decades in the making."
In contrast with earlier and perhaps less successful generations of women in tech, these pioneers can point to mentors who are readily accessible, as well as more female VC and corporate heads they can directly address when making pitches. There's also a changing cultural landscape where sexual harassment is in the news and women who talk openly about sex in a business context can be taken seriously.
"Change is definitely in the air," said Kevin O'Sullivan, the president and CEO of Massachusetts Biomedical Initiatives, who sponsored Chin and has helped launch more than a hundred biotech companies in his home state since the 1980s.
Like a pinprick bursting a balloon, the #MeToo social movement and its focus on the prevalence of sexual harassment and assault is a factor in the success of femtech, some experts believe, provoking heightened awareness about the role of women in society -- including equal access to start-up capital.
"If such a difficult topic is being discussed in the open, that means more and more people are speaking out and are no longer afraid about sharing their own concerns," said Debbie Hart, president and CEO of BioNJ, a business trade group she founded in 1994. "That's empowering the whole women's movement."
The power of programs that allow young women to witness successful older women in leadership cannot be overstated.
Observers like Hart say that femtech's advent is also due to a payoff from longer-term investments in a slew of programs encouraging girls to pursue STEM careers and women to be hired as leaders, as well as changing social norms to allow female health to be part of the public discourse.
The power of programs that allow young women to witness successful older women in leadership cannot be overstated, according to Susan Scherreik of the Stillman School of Business at Seton Hall University in New Jersey.
"What I have found in entrepreneurship is that it's all about two things: role models and mentoring," said Scherreik, director of the university's Center for Entrepreneurial Studies.
One of Scherreik's top students, Madison Schott, is convinced that the availability of female mentors has been instrumental to her success and will remain so in her future. "It definitely is very encouraging," said Schott, who won the "Pirates Pitch" university-wide business start-up competition in April for an app she is developing that uses AI to guide readers to reliable news sources. "Woman to woman," she added, "you can be more open when you have questions or problems."
Programs that showcase successful females in leadership positions are beginning to bear fruit, inspiring a new generation of females in business, according to Susan Scherreik (at left), director of Seton Hall University's Center for Entrepreneurial Studies at the Stillman School of Business. Her student, Madison Schott (right), is the winner of a university-wide business start-up competition for an app she is developing.
While femtech entrepreneurs may be the beneficiaries of change, they also may be its agents. Scherl, the author, who has been working in the female healthcare sector for more than a decade, believes in persistence. In 2010, organizers of a major awards show banned a product she was marketing, Zestra Essential Arousal Oils*, from a gift bag for honorees. Two years ago, however, times changed and femtech prevailed. The company making goodie bags for Academy Awards nominees included another one of her products, Nuelle's Fiera, a $250 vibrator.
"We come from so many different perspectives when it comes to sex, whether it is cultural, religious, age-related, or even from a trauma, so we never have created a common language," Scherl said. "But we in femtech are making huge progress. We are not only selling products now, we are selling conversation, and we are selling a comfort with sexuality in all its complex forms."
[*Correction: Due to a reporting error, the product that was banned in 2010 was initially identified as Nuelle's Fiera, not Zestra Essential Arousal Oils. The article has been updated for accuracy. --Editor]
Worried About Eating GMOs? That’s Not the Real Problem
The 21st century food system is awash in ethical issues. To name just a handful: There's the environmental impacts of farming, the human health effects of diets based on animal products and processed foods, the growing clamor around food waste, and the longstanding concerns about agricultural labor. The last decade has seen the emergence of "ethical consumption," as people have been encouraged to avoid products that are associated with animal cruelty or unfair to farmers.
Misguided concerns about GMOs are missing the point altogether and distracting from a far more substantive ethical problem.
But consumers have never been so ignorant about where food comes from, and they are vulnerable to oversimplifications and faulty messaging. Many would include the first generation of crops from agricultural applications of recombinant DNA methods for genetic improvement—so called GMOs—among the foods they should avoid for ethical reasons. Unfortunately, these misguided concerns are missing the point altogether and distracting from a far more substantive ethical problem.
As we stand on the precipice of a new era in food and biotechnology – crops and animals with genomes altered through gene editing – it is more important than ever to let go of unnecessary fears and to pay attention to the real hazards of agricultural innovation.
But first, as a bioethicist with almost 40 years of experience working on issues in the food system, let me stress the overall context and rationale for trying to make changes in plant and animal genetics. Doing so, whether through conventional breeding or biotechnology, allows producers to meet the challenges of seasonal climate differences and increase yields.
And just because a food was created through ordinary plant breeding vs. genetic modification does not automatically make it safe. Things can and do go wrong in ordinary plant breeding, such as with potatoes and tomatoes. These both produce toxins in the green parts of the plant, and breeders exercise caution to ensure that toxins aren't transferred to edible parts.
Despite real risks, there is no regulatory oversight that protects us from these known hazards. We rely on the professional ethics of agricultural scientists. And GMOs are, in comparison, much more carefully tested and regulated. The claim that they are "unregulated" is just false.
We should not ignore the role that all gene technologies have played in displacing small farmers, depleting rural communities, and shifting economic control.
I do want to shift the public's attention away from the anti-GMO debate to more substantive questions about contemporary agriculture that really have little to do with where the genes in their food came from, or how they got there.
No matter how important genetic improvements might be in terms of total global food production, we should not ignore the role that all gene technologies—including breeding—have played in displacing small farmers, depleting rural communities and shifting economic control of agriculture into a small circle of powerful actors. Globally, these changes have had disproportionately harmful effects on women and people of color.
Combined with mechanization and chemicals, gene technologies have freed planters from their dependence on impoverished and poorly educated field hands, but they did nothing to help the fieldworkers transition to a new line of work. These are the real problems that deserve the public's and the science community's attention, not the overly narrow worries about eating GMOs.
But these problems are viewed as "not ours" by agricultural insiders, and they continue to be ignored by scientists whose focus is solely on biology. Many of the concerns that are today viewed as "urban problems" or "social issues" have origins in agriculture. For example, in California tomatoes, the development of mechanical harvesting led to a rapid concentration of ownership and the displacement of thousands of field hands. In the South, similar technologies displaced black farmers working land owned by whites, causing migration to urban centers and unskilled jobs. I must fault the science community for a lack of willingness to even take the thrust of these more socially oriented critiques seriously.
The new suite of tools for genetic modification that go under the name "gene editing" promise greater precision. They should allow scientists to target the locus for new genes in a plant or animal genome, and minimize the chance for causing unwanted impacts on gene functioning. This added precision is reducing some of the uncertainties in the mind of technology developers, and they have been expressing hope that their own confidence will be shared by regulators and by the public at large. In fact, the U.S. government recently issued a statement that gene-edited crops do not require additional regulation because they're just as safe as crops produced through conventional breeding.
It is indeed possible that the public doubts about genetically modified food will be assuaged by this argument. We can only wait and see. Whether or not gene editing will lead to more reflection about agriculture's complicity in problems of economic inequality or structural racism depends much more on the culture of the science community than it does on the technology itself.