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.
The hacker collective known as the Dark Overlord first surfaced in June 2016, when it advertised more than 600,000 patient files from three U.S. healthcare organizations for sale on the dark web. The group, which also attempted to extort ransom from its victims, soon offered another 9 million records pilfered from health insurance companies and provider networks across the country.
Since 2009, federal regulators have counted nearly 5,000 major data breaches in the United States alone, affecting some 260 million individuals.
Last October, apparently seeking publicity as well as cash, the hackers stole a trove of potentially scandalous data from a celebrity plastic surgery clinic in London—including photos of in-progress genitalia- and breast-enhancement surgeries. "We have TBs [terabytes] of this shit. Databases, names, everything," a gang representative told a reporter. "There are some royal families in here."
Bandits like these are prowling healthcare's digital highways in growing numbers. Since 2009, federal regulators have counted nearly 5,000 major data breaches in the United States alone, affecting some 260 million individuals. Although hacker incidents represent less than 20 percent of the total breaches, they account for almost 80 percent of the affected patients. Such attacks expose patients to potential blackmail or identity theft, enable criminals to commit medical fraud or file false tax returns, and may even allow hostile state actors to sabotage electric grids or other infrastructure by e-mailing employees malware disguised as medical notices. According to the consulting agency Accenture, data theft will cost the healthcare industry $305 billion between 2015 and 2019, with annual totals doubling from $40 billion to $80 billion.
Blockchain could put patients in control of their own data, empowering them to access, share, and even sell their medical information as they see fit.
One possible solution to this crisis involves radically retooling the way healthcare data is stored and shared—by using blockchain, the still-emerging information technology that underlies cryptocurrencies such as Bitcoin. And blockchain-enabled IT systems, boosters say, could do much more than prevent the theft of medical data. Such networks could revolutionize healthcare delivery on many levels, creating efficiencies that would reduce medical errors, improve coordination between providers, drive down costs, and give researchers unprecedented insights into patterns of disease. Perhaps most transformative, blockchain could put patients in control of their own data, empowering them to access, share, and even sell their medical information as they see fit. Widespread adoption could result in "a new kind of healthcare economy, in which data and services are quantifiable and exchangeable, with strong guarantees around both the security and privacy of sensitive information," wrote W. Brian Smith, chief scientist of healthcare-blockchain startup PokitDok, in a recent white paper.
Around the world, entrepreneurs, corporations, and government agencies are hopping aboard the blockchain train. A survey by the IBM Institute for Business Value, released in late 2016, found that 16 percent of healthcare executives in 16 countries planned to begin implementing some form of the technology in the coming year; 90 percent planned to launch a pilot program in the next two years. In 2017, Estonia became the first country to switch its medical-records system to a blockchain-based framework. Great Britain and Dubai are exploring a similar move. Yet in countries with more fragmented health systems, most notably the U.S., the challenges remain formidable. Some of the most advanced healthcare applications envisioned for blockchain, moreover, raise technological and ethical questions whose answers may not arrive anytime soon.
By creating a detailed, comprehensive, and immutable timeline of medical transactions, blockchain-based recordkeeping could help providers gauge a patient's long-term health patterns in a way that's never before been possible.
What Exactly Is Blockchain, Anyway?
To understand the buzz around blockchain, it's necessary to grasp (at least loosely) how the technology works. Ordinary digital recordkeeping systems rely on a central administrator that acts as gatekeeper to a treasury of data; if you can sneak past the guard, you can often gain access to the entire hoard, and your intrusion may go undetected indefinitely. Blockchain, by contrast, employs a network of synchronized, replicated databases. Information is scattered among these nodes, rather than on a single server, and is exchanged through encrypted, peer-to-peer pathways. Each transaction is visible to every computer on the network, and must be approved by a majority in order to be successfully completed. Each batch of transactions, or "block," is date- and time-stamped, marked with the user's identity, and given a cryptographic code, which is posted to every node. These blocks form a "chain," preserved in an electronic ledger, that can be read by all users but can't be edited. Any unauthorized access, or attempt at tampering, can be quickly neutralized by these overlapping safeguards. Even if a hacker managed to break into the system, penetrating deeply would be extraordinarily difficult.
Because blockchain technology shares transaction records throughout a network, it could eliminate communication bottlenecks between different components of the healthcare system (primary care physicians, specialists, nurses, and so on). And because blockchain-based systems are designed to incorporate programs known as "smart contracts," which automate functions previously requiring human intervention, they could reduce dangerous slipups as well as tedious and costly paperwork. For example, when a patient gets a checkup, sees a specialist, and fills a prescription, all these actions could be automatically recorded on his or her electronic health record (EHR), checked for errors, submitted for billing, and entered on insurance claims—which could be adjudicated and reimbursed automatically as well. "Blockchain has the potential to remove a lot of intermediaries from existing workflows, whether digital or nondigital," says Kamaljit Behera, an industry analyst for the consulting firm Frost & Sullivan.
The possible upsides don't end there. By creating a detailed, comprehensive, and immutable timeline of medical transactions, blockchain-based recordkeeping could help providers gauge a patient's long-term health patterns in a way that's never before been possible. In addition to data entered by their caregivers, individuals could use app-based technologies or wearables to transmit other information to their records, such as diet, exercise, and sleep patterns, adding new depth to their medical portraits.
Many experts expect healthcare blockchain to take root more slowly in the U.S. than in nations with government-run national health services.
Smart contracts could also allow patients to specify who has access to their data. "If you get an MRI and want your orthopedist to see it, you can add him to your network instead of carrying a CD into his office," explains Andrew Lippman, associate director of the MIT Media Lab, who helped create a prototype healthcare blockchain system called MedRec that's currently being tested at Beth Israel Deaconess Hospital in Boston. "Or you might make a smart contract to allow your son or daughter to access your healthcare records if something happens to you." Another option: permitting researchers to analyze your data for scientific purposes, whether anonymously or with your name attached.
The Recent History, and Looking Ahead
Over the past two years, a crowd of startups has begun vying for a piece of the emerging healthcare blockchain market. Some, like PokitDok and Atlanta-based Patientory, plan to mint proprietary cryptocurrencies, which investors can buy in lieu of stock, medical providers may earn as a reward for achieving better outcomes, and patients might score for meeting wellness goals or participating in clinical trials. (Patientory's initial coin offering, or ICO, raised more than $7 million in three days.) Several fledgling healthcare-blockchain companies have found powerful corporate partners: Intel for Silicon Valley's PokitDok, Kaiser Permanente for Patientory, Philips for Los Angeles-based Gem Health. At least one established provider network, Change Healthcare, is developing blockchain-based systems of its own. Two months ago, Change launched what it calls the first "enterprise-scale" blockchain network in U.S. healthcare—a system to track insurance claim submissions and remittances.
No one, however, has set a roll-out date for a full-blown, blockchain-based EHR system in this country. "We have yet to see anything move from the pilot phase to some kind of production status," says Debbie Bucci, an IT architect in the federal government's Office of the National Coordinator for Health Information Technology. Indeed, many experts expect healthcare blockchain to take root more slowly here than in nations with government-run national health services. In America, a typical patient may have dealings with a family doctor who keeps everything on paper, an assortment of hospitals that use different EHR systems, and an insurer whose system for processing claims is separate from that of the healthcare providers. To help bridge these gaps, a consortium called the Hyperledger Healthcare Working Group (which includes many of the leading players in the field) is developing standard protocols for blockchain interoperability and other functions. Adding to the complexity is the federal Health Insurance and Portability Act (HIPAA), which governs who can access patient data and under what circumstances. "Healthcare blockchain is in a very nascent stage," says Behera. "Coming up with regulations and other guidelines, and achieving large-scale implementation, will take some time."
The ethical implications of buying and selling personal genomic data in an electronic marketplace are doubtless open to debate.
How long? Behera, like other analysts, estimates that relatively simple applications, such as revenue-cycle management systems, could become commonplace in the next five years. More ambitious efforts might reach fruition in a decade or so. But once the infrastructure for healthcare blockchain is fully established, its uses could go far beyond keeping better EHRs.
A handful of scientists and entrepreneurs are already working to develop one visionary application: managing genomic data. Last month, Harvard University geneticist George Church—one of the most influential figures in his discipline—launched a business called Nebula Genomics. It aims to set up an exchange in which individuals can use "Neptune tokens" to purchase DNA sequencing, which will be stored in the company's blockchain-based system; research groups will be able to pay clients for their data using the same cryptocurrency. Luna DNA, founded by a team of biotech veterans in San Diego, plans a similar service, as does a Moscow-based startup called the Zenome Project.
Hossein Rahnama, CEO of the mobile-tech company Flybits and director of research at the Ryerson Centre for Cloud and Context-Aware Computing in Toronto, envisions a more personalized way of sharing genomic data via blockchain. His firm is working with a U.S. insurance company to develop a service that would allow clients in their 20s and 30s to connect with people in their 70s or 80s with similar genomes. The young clients would learn how the elders' lifestyle choices had influenced their health, so that they could modify their own habits accordingly. "It's intergenerational wisdom-sharing," explains Rahnama, who is 38. "I would actually pay to be a part of that network."
The ethical implications of buying and selling personal genomic data in an electronic marketplace are doubtless open to debate. Such commerce could greatly expand the pool of subjects for research in many areas of medicine, enabling the kinds of breakthroughs that only Big Data can provide. Yet it could also lead millions to surrender the most private information of all—the secrets of their cells—to buyers with less benign intentions. The Dark Overlord, one might argue, could not hope for a more satisfying victory.
These scenarios, however, are pure conjecture. After the first web page was posted, in 1991, Lippman observes, "a whole universe developed that you couldn't have imagined on Day 1." The same, he adds, is likely true for healthcare blockchain. "Our vision is to make medical records useful for you and for society, and to give you more control over your own identity. Time will tell."
The First Cloned Monkeys Provoked More Shrugs Than Shocks
A few months ago, it was announced that not one, but two healthy long-tailed macaque monkeys were cloned—a first for primates of any kind. The cells were sourced from aborted monkey fetuses and the DNA transferred into eggs whose nuclei had been removed, the same method that was used in 1996 to clone "Dolly the Sheep." Two live births, females named Zhong Zhong and Hua Hua, resulted from 60 surrogate mothers. Inefficient, it's true. But over time, the methods are likely to be improved.
The scientist who supervised the project predicts that cloning, along with gene editing, will result in "ideal primate models" for studying disease mechanisms and drug screening.
Dr. Gerald Schatten, a famous would-be monkey cloner, authored a controversial paper in 2003 describing the formidable challenges to cloning monkeys and humans, speculating that the feat might never be accomplished. Now, some 15 years later, that prediction, insofar as it relates to monkeys, has blown away.
Zhong Zhong and Hua Hua were created at the Chinese Academy of Science's Institute of Neuroscience in Shanghai. The Institute founded in 1999 boasts 32 laboratories, expanding to 50 labs in 2020. It maintains two non-human primate research facilities.
The founder and director, Dr. Mu-ming Poo, supervised the project. Poo is an extremely accomplished senior researcher at the pinnacle of his field, a distinguished professor emeritus in Biology at UC Berkeley. In 2016, he was awarded the prestigious $500,000 Gruber Neuroscience Prize. At that time, Poo's experiments were described by a colleague as being "innovative and very often ingenious."
Poo maintains the reputation of studying some of the most important questions in cellular neuroscience.
But is society ready to accept cloned primates for medical research without the attendant hysteria about fears of cloned humans?
By Western standards, use of non-human primates in research focuses on the welfare of the animal subjects. As PETA reminds us, there is a dreadful and sad history of mistreatment. Dr. Poo assures us that his cloned monkeys are treated ethically and that the Institute is compliant with the highest regulatory standards, as promulgated by the U.S. National Institutes of Health.
He presents the noblest justifications for the research. He predicts that cloning, along with gene editing, will result in "ideal primate models" for studying disease mechanisms and drug screening. He declares that this will eventually help to solve Parkinson's, Huntington's and Alzheimer's disease.
But is society ready to accept cloned primates for medical research without the attendant hysteria about fears of cloned humans? It appears so.
While much of the news coverage expressed this predictable worry, my overall impression is that the societal response was muted. Where was the expected outrage? Then again, we've come a long way since Dolly the Sheep in terms of both the science and the cultural acceptance of cloning. Perhaps my unique vantage point can provide perspective on how much attitudes have evolved.
Perhaps my unique vantage point can provide perspective on how much attitudes have evolved.
I sometimes joke that I am the world's only human cloning lawyer—a great gig but there are still no clients.
I first crashed into the cloning scene in 2002 when I sued the so-called human cloning company "Clonaid" and asked in court to have a temporary guardian appointed for the alleged first human clone "Baby Eve." The claim needed to be tested, and mine was the first case ever aiming to protect the rights of a human clone. My legal basis was child welfare law, protecting minors from abuse, negligence, and exploitation.
The case had me on back-to-back global television broadcasts around the world; there was live news and "breathless" coverage at the courthouse emblazoned in headlines in every language on the planet. Cloning was, after all, perceived as a species-altering event: asexual reproduction. The controversy dominated world headlines for month until Clonaid's claim was busted as the "fakest" of fake news.
Fresh off the cloning case, the scientific community reached out to me, seeing me as the defender of legitimate science, an opponent of cloning human babies but a proponent of using cloning techniques to accelerate ethical regenerative medicine and embryonic stem cell research in general.
The years 2003 to 2006 were the era of the "stem cell wars" and a dominant issue was human cloning. Social conservative lawmakers around the world were seeking bans or criminalization not only of cloning babies but also the cloning of cells to match the donor's genetics. Scientists were being threatened with fines and imprisonment. Human cloning was being challenged in the United Nations with the United States backing a global treaty to ban and morally condemn all cloning -- including the technique that was crucial for research.
Scientists and patients were touting the cloning technique as a major biomedical breakthrough because cells could be created as direct genetic matches from a specific donor.
At the same time, scientists and patients were touting the cloning technique as a major biomedical breakthrough because cells could be created as direct genetic matches from a specific donor.
So my organization organized a conference at UN headquarters to defend research cloning and all the big names in stem cell research were there. We organized petitions to the UN and faxed 35,000 signatures to the country mission. These ongoing public policy battles were exacerbated in part because of the growing fear that cloning babies was just around the corner.
Then in 2005, the first cloned dog stunned the world, an Afghan hound named Snuppy. I met him when I visited the laboratories of Professor Woo Suk Hwang in Korea. His minders let me hold his leash -- TIME magazine's scientific breakthrough of the year. He didn't lick me or even wag his tail; I figured he must not like lawyers.
Tragically, soon thereafter, I witnessed firsthand Dr. Hwang's fall from grace when his human stem cell cloning breakthroughs proved false. The massive scientific misconduct rocked the nation of Korea, stem cell science in general, and provoked terrible news coverage.
Nevertheless, by 2007, the proposed bans lost steam, overridden by the advent of a Japanese researcher's Nobel Prize winning formula for reprogramming human cells to create genetically matched cell lines, not requiring the destruction of human embryos.
After years of panic, none of the recent cloning headlines has caused much of a stir.
Five years later, when two American scientists accomplished therapeutic human cloned stem cell lines, their news was accepted without hysteria. Perhaps enough time had passed since Hwang and the drama was drained.
In the just past 30 days we have seen more cloning headlines. Another cultural icon, Barbara Streisand, revealed she owns two cloned Coton de Tulear puppies. The other weekend, the television news show "60 Minutes" devoted close to an hour on the cloned ponies used at the top level of professional polo. And in India, scientists just cloned the first Assamese buffalo.
And you know what? After years of panic, none of this has caused much of a stir. It's as if the future described by Alvin Toffler in "Future Shock" has arrived and we are just living with it. A couple of cloned monkeys barely move the needle.
Perhaps it is the advent of the Internet and the overall dilution of wonder and outrage. Or maybe the muted response is rooted in popular culture. From Orphan Black to the plotlines of dozens of shows and books, cloning is just old news. The hand-wringing discussions about "human dignity" and "slippery slopes" have taken a backseat to the AI apocalypse and Martian missions.
We humans are enduring plagues of dementia and Alzheimer's, and we will need more monkeys. I will take mine cloned, if it will speed progress.
Personally, I still believe that cloned children should not be an option. Child welfare laws might be the best deterrent.
The same does not hold for cloning monkey research subjects. Squeamishness aside, I think Zhong Zhong and Hua Hua will soon be joined by a legion of cloned macaques and probably marmosets.
We humans are enduring plagues of dementia and Alzheimer's, and we will need more monkeys. I will take mine cloned, if it will speed the mending of these consciousness-destroying afflictions.
Scientific revolutions once took centuries, then decades, and now seem to bombard us daily. The convergence of technologies has accelerated the future. To Zhong Zhong and Hua Hua, my best wishes with the hope that their sacrifices will contribute to the health of all primates -- not just humans.