Our IIPDW webinar on Post-SSRI Sexual Dysfunction is coming up!
We’re looking forward to welcoming our panellists:
David Healey – Professor of Psychiatry, researcher and author with longstanding knowledge of PSSD, and founder of Rxisk.org
Yassie Pirani – therapist, researcher and educator on PSSD, she serves on the leadership team of the Canadian PSSD Society.
Roy Whaley – Roy volunteers for the PSSD Network to raise awareness, having lived with PSSD for 18 years.
You can read more on all of our panellists’ life and work on Eventbrite via the green button below.
The discussion will be moderated by our brilliant IIPDW Board Member, Stevie Lewis. After experiencing a gruelling protracted withdrawal from an antidepressant, Stevie is a UK-based campaigner working for better support services for those affected by prescribed harm.
As always with IIPDW webinars, much of the time will be given to audience questions. So if there’s something you’d like to know on the topic of PSSD, come along to the webinar.
If you can’t make it on the day, you can still get your ticket via Eventbrite to receive a copy of the recording.
In June 2020, Spanish police led a Europe-wide operation that arrested 11 people connected to a pirate IPTV platform with two million subscribers.
Europol and Eurojust announced the action with considerable fanfare but declined to name the service. However, at the time we confirmed that a key target was RapidIPTV, a platform that had been quietly running an IPTV streaming empire since at least 2014.
The authorities saw Amir Z. as the alleged mastermind behind the empire, which also offered a ‘franchise’ model. The man, known to his colleagues as “Dash the Iranian,” was arrested, and this week, after nearly six years of pre-trial proceedings, the prosecution formally started in court.
RapidIPTV Kingpin Goes to Trial
Spain’s National Court (Audiencia Nacional) began hearing the case on Tuesday against five defendants, all of Iranian origin. The charges cover membership of a criminal organization, intellectual property crimes, offenses against the market and consumers, as well as money laundering.
In sharp contrast to the multi-year wait following the arrests, the trial was relatively short-lived.
After three hours of negotiation, all defendants reached an agreement with prosecutors, according to EFE. The prosecution agreed to drop the most serious charge, membership of a criminal organization, after the defendants pleaded guilty to the three other charges.
This resulted in a large sentencing reduction. The prosecution had originally sought 22 and a half years of prison time for Amir Z., but the agreed sentence was just over two years. Similarly, the money-laundering fine that initially could be as high as €70 million was reduced to €8 million as part of the deal.
Because all sides agreed to the plea deal, it cannot be appealed by any party. This effectively ends the prosecution. The sentences for the remaining defendants were not reported.
€12 Million for the Rights-Holders
In addition to the €8 million fine to the state, the sentence also includes a damages fee of €12 million for the affected companies. The court also ordered the confiscation of all material seized during the raids, as well as all funds and accounts held by the defendants.
The private prosecution coalition was an unusually large one. Warner Bros, Universal, Columbia, Sony Pictures, Paramount, New Line, Netflix, Amazon, Disney, and LaLiga had all joined the action under Spain’s acusación particular mechanism, to hold the IPTV operators responsible.
How much money can eventually be recouped has yet to be seen, but with an estimated 2 million subscribers, the operation generated substantial revenue.
A Building in Iran, a Flat in Barcelona
The money-laundering element of the case was also notable. Prosecutors alleged that the group moved approximately €25.1 million through payment processors, cryptocurrency exchanges, shell companies, and falsified invoices.
Specific transactions identified by investigators included the construction of a residential building in Iran, the purchase of a Barcelona property valued at €1.6 million, and the purchase of two luxury vehicles worth a combined €400,000.
Those figures partially overlap with what was already public: at the time of the 2020 raids, Europol reported that police seized real estate, cars, jewelry, cash, and cryptocurrency worth approximately €4.8 million, and €1.1 million frozen in bank accounts.
The platform used various domain names, including rapidiptv.com, rapidiptv.net, iptvstack.com, and the iptv.community forum. According to the prosecution, it captured signals from licensed pay-TV platforms and routed them through a private server network of 50 servers in at least 13 countries across Europe and North America.
Interestingly, iptvstack.com and iptv.community both remain operational at the time of writing.
From: TF, for the latest news on copyright battles, piracy and more.
How I knew I was officially Old: I stopped being disoriented by the experience of meeting with grown-ass adults who wanted to thank me for the books of mine they’d read in their childhoods, which helped shape their lives. Instead of marveling that a book that felt to me like it was ten seconds old was a childhood favorite of this full-grown person, I was free to experience the intense gratification of knowing I’d helped this person find their way, and intense gratitude that they’d told me about it (including you, Sean – it was nice to meet you last night at Drawn and Quarterly in Montreal!).
Now that I am Old, I find myself dwelling on key junctures from my life. It’s not nostalgia (“Nostalgia is a toxic impulse” – J. Hodgman) – rather, it’s an attempt to figure out how I got here (“My god! What have I done?” – D. Byrne), and also, how the world got this way.
There’s one incident I return to a lot, a moment that didn’t feel momentous at the time, but which, on reflection, seems to have a lot to say about this moment – both for me, and for the world we live in.
Back in the late 1990s, I co-founded a dotcom company, Opencola. It was a “free/open, peer-to-peer search and recommendation system.” The big idea was that we could combine early machine learning technology with Napster-style P2P file sharing and a web-crawler to help you find things that would interest you. The way it was gonna work was that you’d have a folder on your desktop and you could put things in it that you liked and the system would crawl other users’ folders, and the open web, and copy things into your folder that it found that seemed related to the stuff you liked. You could refine the system’s sensibilities by thumbs-up/thumbs-downing the suggestions, and it would refine its conception of your preferences over time. As with Napster and its successors, you could also talk to the people whose collections enriched your own, allowing you to connect with people who shared even your most esoteric interests.
Opencola didn’t make it. Our VCs got greedy when Microsoft offered to buy us and tried to grab all the equity away from the founders. I quit and went to EFF, and my partners got very good jobs at Microsoft, and the company was bought for its tax-credits by Opentext, and that was that.
(Well, not quite – several of the programmers who worked on the project have rebooted it, which is very cool!)
But back in the Opencola days, we three partners would have these regular meetings where we’d brainstorm ways that we could make money off of this extremely cool, but frankly very noncommercial idea. As with any good brainstorming session, there were “no bad ideas,” so sometimes we would veer off into fanciful territory, or even very evil territory.
It’s one of those evil ideas that I keep coming back to. Sometimes, during these money-making brainstorm sessions, we’d decompose the technology we were working on into its component parts to see if any subset of them might make money (“Be the first person to not do something no one has ever not done before” – B. Eno).
We had a (by contemporary standards, primitive) machine-learning system; we had a web crawler; and we had a keen sense of how the early web worked. In particular, we were really interested in a new, Linux-based search tool that used citation analysis – a close cousin to our own collaborative filter, harnessing latent clues about relevance implicit in the web’s structure – to produce the best search results the web had ever seen. Like us, this company had no idea how to make money, so we were watching it very carefully. That company was called “Google.”
That’s where the evil part came in. We were pretty sure we could extract a list of the 100,000 most commonly searched terms from Google, and then we could use our web-crawler to capture the top 100 results for each. We could feed these to our Bayesian machine-learning tool to create statistical models of the semantic structure of these results, and then we could generate thousands of pages of word-salad for each of those keywords that matched those statistical models, along with interlinks that could trick Google’s citation analysis model. Plaster those word-salad pages with ads, and voila – free cash flow!
Of course, we didn’t do it. But even as we developed this idea, the room crackled with a kind of dark, excited dread. We weren’t any smarter than many other rooms full of people who were engaged in exercises just like this one. The difference was, we loved the web. The idea of someone deliberately poisoning it this way churned our stomachs. The whole point of Opencola was to connect people with each other based on their shared interests. We loved Google and how it helped you find the people who wrote the web in ways that delighted and informed you. This kind of spam, aimed at wrecking Google’s ability to help people make sense of the things we were all posting to the internet, was…grotesque.
I didn’t know the term then, but what we were doing amounted to “red-teaming” – thinking through the ways that attackers could destroy something that we valued. Later, we tried “blue-teaming,” trying to imagine how our tools might help us fight back if someone else got the same idea and went through with it.
I didn’t know the term “blue-teaming” then, either. Once I learned these terms, they brought a lot of clarity to the world. Today, I have another term that I turn to when I am trying to rally other people who love the internet and want it to be good: “Tron-pilled.” Tron “fought for the user.” Lots of us technologists are Tron-pilled. Back in the early days, when it wasn’t clear that there was ever going to be any money in this internet thing, being Tron-pilled was pretty much the only reason to get involved with it. Sure, there were a few monsters who fell into the early internet because it offered them a chance to torment strangers at a distance, but they were vastly outnumbered by the legion of Tron-pilled nerds who wanted to make the internet better because we wanted all our normie friends to have the same kind of good time we were having.
The point of this is that there were lots of people back then who had the capacity to imagine the kind of gross stuff that Zuckerberg, Musk, and innumerable other scammers, hustlers and creeps got up to on the web. The thing that distinguished these monsters wasn’t their genius – it was their callousness. When we brainstormed ways to break the internet, we felt scared and were inspired to try to save it. When they brainstormed ways to break the internet, they created pitch-decks.
And still: the old web was good in so many ways for so long. The Tron-pilled amongst us held the line. When we build a new, good, post-American internet, we’re going to need a multitude of Tron-pilled technologists, old and young, who build, maintain – and, above all, defend it.
“Red Team Blues”: “A grabby, compulsive thriller that will leave you knowing more about how the world works than you did before.” Tor Books http://redteamblues.com.
“Chokepoint Capitalism: How to Beat Big Tech, Tame Big Content, and Get Artists Paid, with Rebecca Giblin”, on how to unrig the markets for creative labor, Beacon Press/Scribe 2022 https://chokepointcapitalism.com
Currently writing: “The Post-American Internet,” a sequel to “Enshittification,” about the better world the rest of us get to have now that Trump has torched America. Third draft completed. Submitted to editor.
“The Reverse Centaur’s Guide to AI,” a short book for Farrar, Straus and Giroux about being an effective AI critic. LEGAL REVIEW AND COPYEDIT COMPLETE.
“The Post-American Internet,” a short book about internet policy in the age of Trumpism. PLANNING.
A Little Brother short story about DIY insulin PLANNING
This work – excluding any serialized fiction – is licensed under a Creative Commons Attribution 4.0 license. That means you can use it any way you like, including commercially, provided that you attribute it to me, Cory Doctorow, and include a link to pluralistic.net.
Quotations and images are not included in this license; they are included either under a limitation or exception to copyright, or on the basis of a separate license. Please exercise caution.
“When life gives you SARS, you make sarsaparilla” -Joey “Accordion Guy” DeVilla
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The NHS is urging patients to seek medical care as normal as resident doctors continue strike action over the weekend. The latest round of industrial action is set to end at 6:59am on Monday 13 April and NHS staff have been working tirelessly to ensure as many services as possible are able to run during […]
When The Washington Post gutted its book section in February 2026—laying off critics and shuttering one of the last spaces of its kind in a major newspaper—Becca Rothfeld was among those pushed out. Her abrupt layoff was part of a push by owner Jeff Bezos to slash the paper’s staff by 30 percent, as he continues to scrap stories that don’t sufficiently bend to the will of the ultra-wealthy.
Dutch police arrested eight men on suspicion of identity fraud, forgery and cybercrime this week in connection with a multi-million-dollar fake ID platform that generated nearly a million forged documents for scammers worldwide.
The nationwide operation, carried out on April 7 and 8, targeted users of VerifTools, a now-shuttered website that allowed users to enter false personal data and generate fake identity documents, according to a Dutch National Police statement Friday.
“Images of documents purchased via the site are used by criminals for various forms of crime, including phishing and bank helpdesk fraud,” authorities said.
Nine additional suspects—seven men and two teenage girls—have been summoned to report to police. During searches, officers seized electronic devices, cash, cryptocurrency and weapons or items resembling them.
OCCRP previously reported that members of a scam operation used fake passports to dupe unsuspecting victims. Reporters found that those documents were generated by VerifTools.
The arrests follow a joint operation in August 2025, when Dutch police and the U.S. Federal Bureau of Investigation took the platform offline and seized its servers. At the time, U.S. authorities said the action was linked to a “conspiracy to use stolen identity information to access cryptocurrency accounts.”
Dutch police said data recovered from those servers revealed the scale of the operation. Authorities identified 915,655 fake documents generated from May 2023 to August 2025. Among them were 5,169 images of Dutch identity documents, including passports, driving licenses, and residence permits.
In its last year of operation, VerifTools generated an estimated turnover of more than 3 million euros ($3.52 million). Users paid almost $1.47 million for 236,002 U.S. identity documents between July 2024 and August 2025.
Police say those targeted in the latest operation range from “heavy users,” who generated large numbers of documents, to people who used the service only once. Some users, authorities noted, “have generated hundreds, and sometimes even thousands of documents.” Such offenses carry a maximum prison sentence of six years under Dutch law.
“Identity fraud is the basis for a whole host of other forms of crime,” said Frank van den Heuvel, head of the Rotterdam Department of the Aliens, Identification and Human Trafficking Police Unit.
“Organized crime therefore makes grateful use of such tools. The images of the fake documents are also used to evade simpler methods of ID checks — from routine street checks to the employment of large groups of undocumented workers.”
The investigation into users of VerifTools is ongoing.
Last June, at a conference and retreat center not far from downtown Berkeley, California, around 100 people gathered to mull a new, techno-centric future of human reproduction. There was the physics professor moonlighting as a biotech company executive. There was the secret author of a widely read newsletter with a reputation for controversial takes on race and intelligence. There was the fertility specialist with a practice in nearby San Ramon. There was, by way of video feed, the Harvard professor whose foundational work in genetics had arguably helped lay the groundwork for a meeting like this to happen in the first place.
And there was an unmistakable interest in genetically modifying human embryos — to spare them from disease, yes, but also to engineer smarter, stronger, more resilient human beings.
The gathering was convened by the Berkeley Genomics Project, a nonprofit that, according to its website, seeks to “unlock the promise of safe, accessible, and powerful” genetic engineering for humanity. (The project is not affiliated with the University of California, Berkeley.) The host site was a converted hotel now known as Lighthaven. It serves as a home base of sorts for a community of thinkers known as rationalists, who are organized largely around LessWrong, an online forum that’s particularly interested in artificial intelligence and its risks to humanity.
Tsvi Benson-Tilsen, a co-founder of the Berkeley Genomics Project with ties to the rationalist community, told Undark that a goal of the meeting was to get investors talking to companies, scientists talking to entrepreneurs, and interested parents learning about the science. Among the crowd was the controversial blogger and race science enthusiast known as Cremieux Recueil, multiple participants told Undark. (Reporting by The Guardian last year suggested that Cremieux Recueil’s X and Substack accounts are run by Jordan Lasker, an independent researcher who has frequently published race science research; speaking to Undark, Benson-Tilsen could not confirm or deny Cremieux Recueil’s participation.) The gathering took place over three days and touched not just on human embryo editing but on topics like in vitro fertilization embryo selection and the experiences of exceptionally gifted children. Attendees were told they could use the information they received, but not share the identities of any speakers or participants.
Among the crowd was the controversial blogger and race science enthusiast known as Cremieux Recueil.
In the months afterward, however, the project released a trickle of videos from the event on its YouTube page. One shows a talk by the theoretical physicist Stephen Hsu, who co-founded the IVF genetic testing company Genomic Prediction and, in 2020, resigned from a Michigan State University leadership role amid controversy. In it, he suggested the Lighthaven conference would shape the trajectory of humanity for generations to come: “I believe that future historians, when studying the moment in time when humans seized control of their own evolution as a species, they will highlight this meeting.”
The Lighthaven meeting was yet another sign of an accelerating commercial push to begin manipulating human DNA in ways that could ripple through generations to come. Reporting last year indicated that three different startups — Bootstrap Bio, Manhattan Genomics and Preventive — were entertaining ambitions to develop and potentially deploy embryo editing technology in human pregnancies. According to a recent X post by Manhattan Genomics co-founder Cathy Tie, the company shut down in March due to “co-founder conflict,” and Tie has launched a new venture, Origin Genomics, that similarly aims to advance gene editing “at the earliest stages of life.”
It is a moment that the global science community has been anticipating, and publicly angsting over, for years. Since the emergence of the gene-editing tool Crispr-Cas9 more than a decade ago, scientists, bioethicists, legal scholars, faith leaders and policy experts have wrestled with what it would mean to use the tool to tinker with the human gene pool — the fulfillment it could bring to prospective parents who want to bring healthy, flourishing offspring into the world; the socioeconomic inequalities it could deepen; the transformative effect it could have on what it means to be human.
Reports from professional organizations, national academies and working groups have largely arrived at the same conclusion: The science is still too immature, and the social implications too uncertain, to deploy on humanity a tool that, once unleashed, could be difficult if not impossible to rein in. In many countries, including the U.S., it remains illegal to initiate a pregnancy with an edited embryo.
But gene-editing tools have continued to improve, and there are signs that startup companies — motivated potentially by altruism, but certainly by profit — could lead a charge to undo a key provision restricting embryo editing in the U.S., or perhaps skirt it altogether by offering their services in countries with laxer laws. With few international guardrails in place, there’s concern that a determined company might take it upon itself to decide when the technology is ready to release into the wild.
Aleksei Mikhalchenko, a biologist who previously conducted embryo editing research at Oregon Health & Science University, says he doesn’t think it’s a coincidence that so many startups are choosing this moment to test the waters on human embryo editing. “Something is out there,” said Mikhalchenko, who left OHSU last June to help launch the biotech company e184 Repro. “Maybe some people know more than scientists know in academic labs.”
“I’ve been working in this field for the last six years,” Mikhalchenko said, adding that there “was no indication that people want to pursue it and push it towards the clinic, but suddenly, in 2025, there are more than one.”
* * *
In some respects, the era of human gene editing has already long been underway. But never before has it carried such expansive potential implications for society.
That’s because gene editing has until now focused on cells that are not involved in reproduction, otherwise known as somatic cells. In 2023, the sickle cell treatment Casgevy became the first Crispr-based therapy to win approval from the Food and Drug Administration. When a baby boy was born in 2024 with a rare and potentially fatal metabolic disorder, doctors at the Children’s Hospital of Philadelphia treated him with a custom-made Crispr therapy that entered the boy’s liver cells and rewrote a single letter of his genetic sequence. Additional Crispr-based treatments have been deployed in clinical trials to target cancer, genetic eye disorders and other conditions.
The era of human gene editing has already long been under way.
Because these gene therapies target somatic cells, there’s a limit to the trouble they could cause if things were to go wrong. If Crispr were to make an errant edit, for instance, or if an intended edit were to have harmful unintended consequences, scientists could take some solace in knowing that it likely wouldn’t be passed on to the patient’s offspring.
But the task of delivering Crispr to the bodily organs where it is needed can be costly and risky. Per-patient costs of gene therapies routinely run in the millions of dollars, and they can sometimes trigger harmful immune responses. In one high-profile case from 2022, a 27-year-old man who was treated with a Crispr-based gene therapy for Duchenne muscular dystrophy suffered a fatal immune response to the viral vector used to deliver the therapy.
A chorus of biotech investors and entrepreneurs have begun to ask: Why not edit DNA earlier, when it might be possible to tweak the genetic code in every cell of a person’s body with an injection to a single cell in a laboratory dish? Why not edit human embryos?
* * *
Strategies for human embryo editing center on in vitro fertilization, a method that in 2023 was used for 2.6% of all births in the U.S. — or about 96,000 births total. In a typical procedure, a clinician will harvest maybe 10 to 20 eggs from the mother’s ovaries and fertilize the mature ones with sperm.
About a day later, if all goes well, the fertilized eggs, or embryos, will cleave from a single cell into two. Then four. Then eight. After about five or six days, a few of the embryos — if luck and biology are on their side — will reach what’s known as the blastocyst stage. At that point, the aspiring parents can choose to implant one to begin a pregnancy, or to freeze them for later use.
Part of Mikhalchenko’s job at Oregon Health & Science University was to study a particular way to intervene in that process. If an egg were injected not just with sperm but with Crispr, then it should be possible, in theory at least, to rewrite an ill-fated line of genetic code before a child is born. And even before pregnancy begins.
The approach has a certain allure. It could be relatively cheap — as little as a few thousand dollars, scientist and biotech entrepreneur Lucas Harrington estimated in a 2024 blog post, prior to co-founding the embryo editing startup Preventive. And it could allow scientists to correct genetic mutations that would be complicated to fix later in life, such as those that cause sickle cell, cystic fibrosis or Tay-Sachs disease. Additionally, because the corrected DNA would be passed on as cells divide — including to the nascent embryo’s future sperm or egg cells, known as germline cells — it could potentially eliminate a troubling genetic condition not just for one person, but for all their descendants too.
* * *
Mikhalchenko knows as well as anyone that all of this is much easier to say than to do. To understand why, it’s helpful to understand the particulars of how Crispr works.
The gene-editing tool has often been compared to a “find-and-replace” function in a word processor. In the classic approach, the Crispr-Cas9 system — or Crispr system, for short — enters a cell and severs a double-stranded DNA molecule at a specific point in one of the 46 chromosomes that make up a person’s full genetic sequence, or genome. Then, scientists try to harness the cell’s own DNA repair mechanisms to rewrite the genetic sequence near that spot, perhaps by providing the cell with snippets of properly coded DNA that can serve as templates for the cell to copy.
A living cell is a messy place, however, and the find-and-replace function can go awry. Sometimes, the Crispr system cuts the genome in the wrong place; sometimes it cuts in the right place, but the repair process goes haywire, inserting the wrong code, deleting existing code, or ignoring the template altogether. Occasionally, an entire chromosome can go missing. In one 2020 study, nearly nine in 10 cells showed evidence of off-target edits.
Newer Crispr system variations could potentially alleviate this problem. Two approaches in particular — known as base editing and prime editing and both developed at the Broad Institute of MIT and Harvard — make it possible to rewrite portions of genetic code without fully breaking the double-stranded DNA, minimizing the number of ways the repair process can go wrong. In one recent study of prime editing in somatic cells, researchers reduced rates of unintended insertions and deletions to less than one in every 500 edits. In an abstract written for a recent conference presentation, researchers at Columbia University and the biotech company Genomic Prediction reported that base editing demonstrated “both high efficiency and precision in preimplantation human embryos.” Dieter Egli, a co-author of the abstract who leads a lab at Columbia, declined to be interviewed for this story but wrote in an email that “base editors and other tools have not extensively been tested in the human embryo.” (In an emailed response to questions from Undark, Karen Zusi-Tran, a senior media relations manager for the Broad Institute, which licenses base and prime editing, wrote that the institute’s written licenses for its Crispr technologies “prohibit any use for human germline modification,” though nonprofit institutions and government agencies do not need a written license to use the technologies for internal research.)
The gene-editing tool has often been compared to a “find-and-replace” function in a word processor.
Mikhalchenko and other experts say that, even if advanced Crispr tools solve some technical issues, a big puzzle remains. Ideally, one would check an edited embryo before implanting it, to make sure edits have gone as planned. However, scientists can safely pluck only a few cells from a preimplantation embryo for genetic screening without destroying it. The problem is that it’s not uncommon for Crispr to edit some of an embryo’s cells and not others, or to edit different cells in different ways, producing an embryo that is a mosaic of cells having slightly different DNA. And if that’s the case, what looks like a successful procedure based on a screening of a few cells may have gone severely awry in others.
It’s unclear how mosaicism would affect the long-term development of the child, but what is clear is that it makes it virtually impossible to know prior to initiating a pregnancy whether an edited embryo has a clean bill of health.
It is a conundrum that has given many experts pause, including the authors of a 2020 report by the National Academy of Sciences, the National Academy of Medicine and the Royal Society. They wrote that it was “difficult to envision” a method that could determine, before an embryo has been implanted, whether all its cells have been properly edited. And the price of a mistake could be extraordinarily high: Because germline alterations are heritable, a child produced using the technology would pass their edited genes down to future generations. Once the edits were introduced into the human population, it would be difficult to remove them or limit their spread, experts have concluded.
Mikhalchenko believes that mosaicism is a significant problem — one that hasn’t gotten enough research attention. But he also thinks that the right group of people, given a few years to work on it, can find ways to ensure that embryos are edited as intended. “It’s going to be very expensive,” he said, but he believes that if “a startup company focused on this, it should be relatively straightforward to make it work, at least for specific conditions they are targeting.”
* * *
On its website, the now-defunct Manhattan Genomics, which once dubbed its embryo-editing efforts the “Manhattan Project,” said it would prevent thousands of diseases, including Alzheimer’s, cystic fibrosis, sickle cell anemia and Duchenne muscular dystrophy. (Representatives of Manhattan Genomics did not respond to multiple emails requesting an interview for this story.) The startup Preventive, meanwhile, describes itself as being “dedicated to rigorous research into preventing disease before birth.”
But when the U.K.-based policy and research center the Nuffield Council on Bioethics took up the issue in 2018, it noted that a pre-implantation embryo “is not an actual person but a possible person.” To describe embryo editing as prevention, the council wrote, “would be to ignore the agency involved in reproduction.” Individuals or couples who are at risk of passing on a particular genetic condition may decide they are OK with the possibility of their child inheriting the disorder, the council noted. Or they may choose to adopt, or seek a sperm or egg donor. Or, if they are determined to birth a genetically related child free of the disorder, they could undergo IVF and genetically screen the embryos before initiating a pregnancy, to ensure that the one they implant is genetically healthy.
But the math of genetic inheritance suggests that, for some couples, pre-implantation screening would be futile. For diseases that occur when a person has two faulty copies of the same gene, for instance, parents who each carry two faulty copies are all but guaranteed to pass the condition to every IVF embryo they produce. For diseases caused by just a single faulty copy of a gene, it would take just one parent carrying two faulty copies to seal the fate of every embryo.
Scientists and bioethicists have pointed to these scenarios, in which all of a couple’s embryos would inherit the faulty gene, as the most compelling cases for human embryo editing. Likewise, the Nuffield Council likened embryo editing to a kind of infertility treatment — a therapy for prospective parents who would otherwise be unable to have a genetically related child that is free of a condition they do not wish the child to have.
Several experts suggest this kind of infertility is exceedingly rare. In one 2019 analysis of 19 single-gene disorders, researchers estimated that in the U.S. there are likely fewer than a dozen births a year that could hypothetically benefit from embryo editing. That is, fewer than a dozen births to couples who, by virtue of their genetics, would be all but assured of passing a disorder to every embryo they produce. Even that number was likely an overestimate, the researchers wrote, because it didn’t account for diseases’ impacts on life expectancy and other factors that may influence partner selection.
Elsewhere in the world, the candidate pools for embryo editing could be larger, if still modest. The 2020 report by the National Academy of Medicine, National Academy of Sciences and Royal Society estimated, for instance, that there might be as many as 200 couples among the 1.35 billion people then living in India who, were they to choose to have children, would be assured of passing the blood disorder beta thalassemia to their offspring. The report suggested there were potentially thousands of couples in sub-Saharan Africa whose embryos would be certain to carry mutations causing sickle cell disease.
The math of genetic inheritance suggests that, for some couples, pre-implantation screening would be futile.
Paula Amato, a fertility specialist at Oregon Health & Science University who now serves as an adviser to Preventive, believes embryo editing should initially be focused on these rare cases where all of a couple’s embryos would inherit a faulty gene underlying a serious disease. But she thinks that if it proves safe and effective, it would be reasonable to expand its use to the larger pool of couples for whom some, but not all, embryos carry a worrisome genetic variant — especially couples who are producing relatively few embryos in each IVF cycle. “Maybe it’s the older woman who only makes three or four eggs and only has a couple of embryos,” she said. “Maybe we should try and fix some of those embryos so that she doesn’t have to do 10 cycles of IVF.”
In practice, this would be complicated: Leading embryo editing schemes typically call for injecting Crispr well before an embryo is mature enough to be screened for disease-causing mutations. Unless researchers can somehow flip that order — by figuring out ways to screen earlier or edit later in an embryo’s development — then applying Crispr in cases where only some of a couple’s embryos carry the faulty gene would mean injecting all of the embryos with editing machinery, whether they need it or not. That’s a scenario that some experts find ethically troubling. But Amato suggested that, if it can be proven safe, it could be likened to common preventive practices such as offering prophylactic medications to healthy, high-risk adults to protect against HIV.
Amato is concerned mostly with preventing serious disease, but it’s not hard for her to imagine more controversial uses lurking on the horizon. “You could see some people arguing, well, if it’s safe to prevent disease, then maybe we should use it to enhance whatever, intelligence or athleticism or all the things that people would want to do if we knew the genes that cause these things, and it was feasible,” she added. “I’m not saying I support that, but you know, you could see people expanding the use.”
* * *
In a recorded talk at Lighthaven titled “Designer Babies: What, How, Why,” Max Berry, a biologist and co-founder of the company Nucleostream, balked at the idea that the first use of human embryo editing should be to cure disease. “There’s not really any benefit there,” he said, citing the paucity of cases where a couple would not be able to select against serious genetic disease through pre-implantation embryo screening. “Germline Genetic Modification is Only for Enhancement,” his accompanying presentation slide asserted, in large font.
Berry shared a slide that highlighted examples from the “Church List” — a list of genetic variants compiled by Harvard University geneticist George Church that are thought to have positive associations with traits like cognitive function, disease resistance, musculature and mental health — as an example of “cool mutations to make.” (Church spoke at the Lighthaven gathering by video feed.) Genes that extend lifespans in mice would also be something people could look at, Berry suggested. “The interesting stuff that people want to do, right, is — you know, maybe you get a taller baby,” he said, “or what 99% of people, at least in this room, want to do is have a smarter baby, or things along those lines.” (Berry declined to be interviewed for this story.)
Experts have expressed doubts about whether gene editing would be effective for complex traits such as intelligence, which are shaped by the combined influences of large numbers of genes and their environments. Still, Benson-Tilsen, of the Berkeley Genomics Project, sees germline engineering — an umbrella term he says includes human embryo editing and other forms of genetic manipulation — as offering, among other benefits, one of humanity’s best hopes for staving off AI doom. “Broadly, I think that artificial intelligence is pretty likely to completely destroy the world,” he told Undark. He hopes to set up the next generation to have more intelligence, he said, and then “hopefully they can have a better shot of somehow helping humanity navigate AI without destroying itself.”
The startup Bootstrap Bio — which, according to a Bloomberg report, has ambitions to edit human embryos — has made intelligence a key part of its pitch. Bootstrap Bio’s website states that it aims to make genetic technology “as ubiquitous (and unremarkable) as eyeglasses.”
“But why should only the tall have access to tall genes?” the homepage reads. “And why should only the smart have access to smart genes?” (After an initial email exchange, Bootstrap Bio co-founder Chase Denecke stopped responding to Undark’s requests to speak on the record for this story.)
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Over the past decade, numerous international summits, professional societies and other expert coalitions have wrestled with the questions raised by the prospect of heritable human genome editing. That conversation reached a fever pitch in 2018, when the Chinese scientist He Jiankui announced the birth of twins from embryos he’d edited in an attempt to confer HIV resistance. (He was later found guilty of engaging in illegal medical practices and sentenced to three years in prison.)
Then and now, a consensus has held steady among science’s top ranks: The technology is not yet safe enough to test in human pregnancies. “Preclinical evidence for the safety and efficacy of heritable human genome editing has not been established, nor has societal discussion and policy debate been concluded,” read a statement from the organizing committee of the most recent International Summit on Human Genome Editing held in London in 2023.
At a 2018 meeting, Chinese scientist He Jiankui describes the editing of genomes in human embryos that led to the birth of twins. He was later found guilty of engaging in illegal medical practices and sentenced to three years in prison. (The National Academies/Flickr)
But as research marches on and technological capabilities are refined, there’s some acknowledgement that technical bars for safety and efficacy could eventually be reachable. “It’s getting there,” said Robin Lovell-Badge, a biologist at the Francis Crick Institute who served on the organizing committees of the three international summits on human genome editing and also on a World Health Organization committee focused on governance of the technology. “I don’t think it’s there yet, but it’s definitely getting there.”
There is a school of thought that if and when human embryo editing techniques become publicly available, the decision of how and whether to use them should rest largely with prospective parents and their doctors.
However, for Ben Hurlbut, an expert in science and technology studies at Arizona State University, the societal implications of human embryo editing are too far-reaching to leave in the hands of individuals. Hurlbut, who helped organize an international summit hosted by the Global Observatory for Genome Editing in 2025, said a decision to edit an embryo would have lifelong consequences for the child and all the other lives downstream of that child. But he also suspects the most likely applications of human embryo editing would not be to address serious monogenic diseases but to achieve medically unnecessary, “societally situated” enhancements. Even if only some parents want to use the technology in that way, he added, it could exert pressure on others to follow suit.
“The much more likely scenario with the deployment of a technology like genome editing is not people who are chomping at the bit to do the thing, but people who may do it reluctantly,” he said. He gave the example of a parent who experiences racial discrimination and is then presented with an option to use a genetic intervention to alter the skin color of their future child: It “might seem like an abhorrent, but also a kind of parentally responsible, even obligatory intervention.”
A decision to target certain diseases with embryo editing technology, especially with a goal of reducing disease rates across society, would raise thorny ethical questions about what kinds of people are allowed to be part of a society, and which lives are worth living, experts have noted. Scientists and bioethicists further warn that the technology could entrench socioeconomic inequalities, conferring biological advantages into the lineages of those parents who can afford it. In a May 2025 editorial, leaders from three genetics societies — the Alliance for Regenerative Medicine, the International Society for Cell & Gene Therapy and the American Society of Gene & Cell Therapy — wrote that if the technology were to be used to program enhancement for a privileged few, it could potentially create a new branch of human evolution.
“If you’re talking about a technology that has a bearing upon the species as such, that has a bearing upon more than just the individual who is availing themselves of it, surely you have to ask the question in a way that goes beyond individual preference and desire,” said Hurlbut. One thing that there’s been a near consensus about, he said, is that “this is not a question that can be left to sort of individual would-be consumers of a technology — that it’s a societal question.”
* * *
A little over half an hour into his talk at Lighthaven, Berry shared a slide with results from a 2020 Pew Research Center survey of 20 countries, which found that majorities in every country — including the U.S. — had a favorable view of using gene editing to “treat a serious disease or condition” a baby would have at birth. Brian Armstrong, CEO of the cryptocurrency platform Coinbase, showed similar polling results, also from the Pew Research Center, when he announced on X last June that he was looking to invest in human embryo editing technology. (Months later, Armstrong posted that he had become an investor in Preventive.) The implication, seemingly, was that embryo editing, for serious disease at least, already enjoys broad societal backing.
“It’s all about really listening and creating a safe climate … where people can voice their doubts.”
But the true picture is likely more complicated than those polling results suggest, explained Sam Riedijk, a medical psychologist at Erasmus University Medical Center in the Netherlands. Riedijk leads the DNA Dialogues consortium, a Dutch initiative that aims to facilitate public dialogues about germline genome editing. Riedijk and her colleagues have learned that surveys can be a flawed way of assessing public opinion on a technology. Responses can be swayed by the ways questions are framed, for instance. It is telling, perhaps, that the Pew survey showing that adults in 20 countries mostly supported gene editing for serious conditions also found that majorities in 16 of those countries — and pluralities in three of the remaining four — viewed scientific research on gene editing, a necessary prerequisite to clinical use, as a misuse of technology.
In a paper published in 2024, the DNA Dialogues consortium reviewed a decade of public engagement studies on human germline gene editing — including surveys, interviews and focus groups — and found that the studies often failed to adequately engage underrepresented groups, with participants tending to be highly educated and predominantly white. And, while many of the studies sought out people’s opinions on certain uses of a technology, they often neglected to probe the values that inform those opinions. Asking someone whether they approve of genetic editing to address serious disease, for instance, leaves unanswered the question of what counts as a severe genetic disease, and why it would or wouldn’t be an acceptable use of technology. An understanding of society’s values, Riedijk said, is critical for informing policy that aligns technology with societal needs.
Riedijk and her colleagues have come to see open-ended dialogues as a way to unearth those values and empower people to think and talk about technologies such as human embryo editing. “It’s all about really listening and creating a safe climate, like a safe environment, where people can voice their doubts, their feelings, without trying to convince each other,” Riedijk said. “You know, where we can really explore instead of debating.”
* * *
For about the past decade, a roughly 100-word rider has been attached to federal spending bills every year to prevent the Food and Drug Administration from considering for approval clinical study proposals involving gene-edited embryos. Nicknamed the Aderholt Amendment after the congressman who introduced it, it effectively makes it illegal to implant a gene-edited embryo to initiate a pregnancy in the U.S.
As Arizona State’s Hurlbut sees it, the amendment has “held a line,” buying time for discussions about whether the de facto moratorium on clinical uses of human embryo editing should be temporary, or perhaps made permanent. “I think that those discussions, there’s a lot that inhibits them, and they have quite a ways to go,” he said, citing what he sees as a decreasing appetite within the scientific community for conversations around the controversial topic.
According to Mikhalchenko, there were whispers at the Lighthaven meeting that prohibitions against embryo editing could be removed, potentially paving the way for companies to begin making their bids to the FDA. On its website, Manhattan Genomics said it was advocating to revise the Aderholt Amendment, along with a separate federal provision that prohibits federal funding of research with human embryos.
There were whispers at the Lighthaven meeting that prohibitions against embryo editing could be removed.
But there is also concern that, regardless of what happens with federal policy, companies will take shortcuts. In an interview with the podcast Open Society WTF, Denecke, co-founder of Bootstrap Bio, suggested the company was considering running clinical trials for gene editing on adults in Próspera, an economic zone in Honduras known for its loose regulation of clinical studies. At Lighthaven, Berry similarly floated the idea of going to foreign countries to implant edited embryos, and told an audience that with a good amount of funding “you could probably get this done” in 12 to 24 months. (In its May 2025 editorial, the Alliance for Regenerative Medicine, the International Society for Cell & Gene Therapy, and the American Society of Gene & Cell Therapy estimated it would “take much more than a decade” to perform the research needed to fully understand the risks of germline genome modifications.)
“I think there’s some naivete among some of the people involved in some of these companies about what could go wrong and how difficult it is to do it ethically and properly,” said Amato, who last June said she believed the technology was three to five years from being ready for clinical application in humans. Amato started advising Preventive in October, joining a team that, according to the company’s website, also includes one of the co-inventors of prime editing, the advanced Crispr technology.
Preventive launched as a public benefit corporation — a kind of organization that aims to generate profit while having a positive impact on society — and the startup has said its goal “is to determine whether the newest generation of gene editing technologies can be used safely and responsibly to correct devastating genetic conditions for future children.” The Wall Street Journal reported in November that Preventive is also considering experimenting outside the U.S., possibly in the United Arab Emirates. (Lucas Harrington, the corporation’s co-founder, declined to be interviewed for this story.)
A March press release from Origin Genomics — the Tie-led successor to Manhattan Genomics — stated the company “will operate exclusively in the United States,” with research conducted under independent ethics oversight “and in compliance with applicable federal and state regulations.”
* * *
There is a concept in the philosophy of technology known as the Collingridge dilemma. As Boy Vijlbrief — a medical ethicist at the Erasmus University Medical Center in the Netherlands and a collaborator on the DNA Dialogues consortium — explains it, when a technology is really new and still emerging, there is a lot of leeway to govern it. But because so little is known about the technology, it’s difficult to anticipate what kind of governance will be good or effective. After the technology matures and has been widely adopted, society can better understand its benefits and pitfalls, but it may be too late to change course.
In theory, Vijlbrief said, there should be a sweet spot, a point when society knows enough about a technology to make informed choices, but still has enough runway to meaningfully regulate it. Vijlbrief thinks that when it comes to germline gene editing, that point may come soon.
“I think introducing that question of how do we want to live is very important.”
Rumiana Yotova, a specialist in international human rights law at the University of Cambridge, suggested that, ideally, governments would come to a consensus on standards before a technology gets into the hands of private companies. “Can we just let startups and let private companies decide what becomes clinically available and when?” asked Yotova, who has also argued that there should be an international consensus on minimum regulatory standards before human embryo editing is unleashed into the world.
While some people, to some extent, really can benefit from human germline genome editing, Vijlbrief added, “when I see something like the Manhattan Project” — referring to Manhattan Genomics’ short-lived embryo editing initiative — “that’s when the alarm bells start ringing.” He feels the ethics statement the company published was shortsighted and glossed over important moral arguments about human germline genome editing. “There’s such an undercurrent there of this perfectionism,” he said.
Amid the swirling anxieties about the potential societal implications of embryo editing, Vijlbrief thinks it’s important for societies to ask not just who this technology is for, or who will have access to it, but also how they want to live with the technology, and what kind of future they find desirable.
“I think introducing that question of how do we want to live is very important,” he said. “Because I think a lot of people don’t want to live in a world where we have to eliminate every imperfection.”
* * *
On X last June, Hsu — the physicist turned biotech company co-founder — shared a photo showing two people standing outdoors before an audience next to an oversized poster welcoming attendees to “Reproductive Frontiers Summit 2025,” the official name for the Lighthaven gathering. In the photo, the two people’s faces are digitally blacked out, as if to conceal their identities. A cascade of yellow flowers drapes from the branches behind them. Visible in the foreground are the backs of a half-dozen attendees, dressed in fleeces and jackets.
In the post, Hsu seems enthusiastic about the ideas that are in the air at Lighthaven: The meeting has convinced him, among other things, that the technology to edit genes of human embryos is “much closer than I previously thought.”
He’s not involved in that area himself, he noted, “but it’s great to speak to the researchers at the frontier.”
We go through this every couple of years: Section 702 of the Foreign Intelligence Surveillance Act (FISA), which of Americans’ communications with foreign persons overseas is up for renewal. As always, Congress can reauthorize it with or without changes, or just let it expire. We know, we know, it’s a pain to have to do this every few years–but it gives us a chance to lift the hood of this behemoth tool of government surveillance and tinker with how it works. That’s why it’s so important right now to urge your Member of Congress not to pass any bill that reauthorizes Section 702 without substantial reforms.
Section 702 is rife with problems, loopholes, and compliance issues that need fixing. The National Security Agency (NSA) collects full conversations being conducted by surveillance targets overseas and stores them, allowing the Federal Bureau of Investigation (FBI) to operate in a “finders keepers” mode of surveillance—they reason that it’s already collected, so why can’t they look at those conversations? There, the FBI can query and even read the U.S. side of that communication without a warrant. The problem is, people who have been spied on by this program won’t even know and have very few ways of finding out. EFF and other civil liberties advocates have been trying for years to know when data collected through Section 702 is used as evidence against them.
There’s simply no excuse for any Member of Congress to support a “clean” reauthorization of Section 702. Anyone who votes to do so does not take your privacy seriously. Full stop.
The intelligence community and its defenders in Congress, as always, seem more interested in defending their rights to read your private communications than in protecting your right to privacy. It’s not really a compromise between safety and privacy if it’s always your privacy that gets sacrificed. Now, we’re drawing a line in the sand: Congress cannot pass a clean extension.
Use this EFF tool to write to your Member of Congress and tell them not to pass a clean reauthorization of Section 702.