On Ending Blindness

Christian Guardino, sighted and singing. Photo by Brent Stirton, National Geographic, all rights reserved.

I spent much of last winter working on a story about what it might take to end global blindness. I’m tickled to see the result now on and inside the cover of September’s National Geographic. The four-section story is about determination in the face of tough odds. Here’s a snip from the first section, about gene therapy fashioned by a group led by Penn’s Jean Bennett, and one from the last section, about the extraordinary Namibian cataract surgeon Helena Ndume, who is possibly the most amazing person I’ve ever met.

Christian, the doctor told Elizabeth, had a retinal disease called Leber congenital amaurosis (LCA). His vision, already bad, would never significantly improve. Nothing could be done. The boy would see little of the world and would always walk, once he learned how, with a cane.

Christian did need a cane, and his mother’s guiding hand, when in 2012, at age 12, he first visited a clinic run by the University of Pennsylvania’s Scheie Eye Institute. Yet this January he walked through the institute’s main building cane free and seemingly fearless. Joking and chatting, the teen led a klatch of Ph.D.’s, M.D.’s, lab techs, and me through the airy lobby. He marveled at the towering atrium, the shiny balconies where people sat having coffee.

“Whoa!” he said as we neared the building’s exit—for before us an enormous revolving door turned its huge blades. His mother was some distance behind; he was on his own. Christian neither stopped nor paused. He walked calmly through the opening of the spinning wedge of steel and glass and held his pace as one glass wall closed behind him and another smoothly swung out of his way. He stepped into the sunlight.

Christian Guardino could see. Everything that had posed an obstacle before—light and dark, steel and glass, the mobile and the immovable—now brought him pleasure. The world had opened before him.

Helena Ndume dancing with one of the 30,000 patients she has given sight to. Photo Brent Stirton, National Geographic, all rights reserved.

Helena Ndume dancing with one of the 30,000 patients she has given sight to. Photo Brent Stirton, National Geographic, all rights reserved.

Cataracts, a disease of poverty, cause half of all blindness on Earth. In the developed world, people with cataracts routinely get treated as soon as they have trouble seeing the TV. In the developing world, people with cataracts routinely go blind. The treatment everywhere is simple: Get clinician and patient in the same room, prep the latter, spend 15 to 20 minutes replacing the cloudy natural lens with a clear artificial lens, do a post-op checkup. In developing countries, treatment usually costs $15 to $100. Yet it reaches few who need it.

Working with Namibia and other African governments and the nonprofit SEE International, Ndume is trying to fix this by running “cataract camps.” At these gatherings in underserved areas, Ndume and other surgeons operate on up to 500 people a week. The United Nations last year recognized Ndume’s “service to humanity” with its inaugural Nelson Rolihlahla Mandela Prize.

It’s a fitting honor for someone who 41 years ago, as a girl of 15, left a different kind of darkness when she fled the apartheid that the South African government had imposed on Namibia. With three friends she made her way to a camp in Angola run by the Namibian resistance movement SWAPO; survived a machine gun attack soon after she arrived; braved hippo-infested rivers and hostile helicopter patrols to find safety in Zambia; told SWAPO she’d like to go to fashion school but was sent instead to medical school in Leipzig, Germany; and there married a countryman who soon after was killed in Angola. She bore their baby alone, finished her ophthalmology training, rejoiced when Namibia won its independence in 1990, and returned for good in 1996 with her child, her education, and a determination to help those who could not see.

The rest is here:Why There’s New Hope for Ending Blindness

Many thanks to editors Jamie Shreeve and Patty Edmonds and to the enormously talented photographer Brent Stirton, whose gorgeous photos grace the story, and whose partnership on this story was a huge blessing. Most of all, all my heart to the many people who shared their lives and work with me for this story — the researchers, patients, family members, and others, many who do not appear in this brief treatment, who helped me understand it. It’s hard to overstate my admiration for their generosity, courage, determination, humility, and good humor. Meeting such people, and hearing their stories and thoughts in person, is by far the most wonderful part of this splendid but difficult job.

If you like the story, consider subscribing to the Geographic. It’s wonderfully affordable, gorgeous, and your money will support the sort of extended reporting that a story like this requires.

The most terrifying childhood condition you’ve never heard of | Spectrum

Bernardo and Gina Pace

I’m honored to have written this story of a rare, severely debilitating disorder; the researchers trying to crack it; and the uncommon love between a father and his 24-year-old daughter.

You should read it here. For those who like teasers:

The first sign, at least in retrospect, was a reticence, he recalls in the memoir, that Gina hadn’t been displaying as she blossomed through her second and into her third year: “a little less eye contact … a little less chatter, a little more pointing.” In the stroller, rolling around Rome, she sometimes sat quietly upright, not relaxed, her eyes fixed forward.

For a time, these changes seemed explainable by their move to Italy. Her older sister was in school full-time, while Gina went to preschool just two or three days a week. It didn’t seem odd that Gina had few friends over and tended to play quietly alongside them.“She just needs time is the truce I offer the situation,” writes Bernardo about that year, “as if it were mine to offer. Piano, piano, the Italians say: little by little.”

Yet by October 1995, when Gina was 3, both her parents were shocked but not exactly surprised when a teacher said she thought Gina might have autism.

Six months later, after the family moved back to the United States, a specialist in New York agreed — “she was emphatic about it,” says Bernardo — and suggested they see Yale’s Fred Volkmar, a leading expert, then and now, in obscure developmental disorders, including CDD. Gina, now 4, was far behind where she’d been a year before. Volkmar told them she had CDD.

Today, Bernardo recognizes that Gina is lucky, as these things go, and significantly more capable than many people with CDD. Yet getting the diagnosis then “was devastating,” he says, and part of him initially refused to accept it. Much would fall away in the months and years to come, including his marriage to Gina’s mother. At first, though, there was grief. “There were a lot of tears there. There still are sometimes,” he says. “You have this idea of what’s possible in your child’s life. It’s a really hard thing to let go of.”

The most terrifying childhood condition you’ve never heard of, at Spectrum.

“He Thinks He’s Untouchable”. Buzzfeed outs another serial harasser. 

Accountability journalism ain’t quite dead yet. Azeen Ghorayshi with another great scoop on horrid behavior.

One of the employees was an administrator whom Katze had hired, at an unusually high salary, on the implicit condition that she submit to his sexual demands. He personally rewarded this woman, known as Mary Roe in some court documents, with “thousands or even tens of thousands” of dollars a year in cash and gifts, the investigation found.

The university found that Katze also sexually harassed another administrative employee, known as Jane Doe in court documents. According to the investigations, Katze asked her to clean his apartment, purchase marijuana and Percocet for him, email escorts and place personal ads for him, and “schedule his manicures, pedicures, haircuts, and hair lightening appointments.” Meanwhile, he joked about having sex with her, made sexual comments about her appearance, sent her sexually suggestive emails, and, on two occasions, tried while drunk to kiss or touch her.

The university had received at least seven previous complaints about Katze’s behavior, including claims that he was frequently intoxicated in the lab, watched porn on his university computer, belittled his employees, and retaliated against lab members who challenged him. A UW spokesperson said the school dealt with allegations against Katze, over the years, with “letters to him, admonishments, etcetera.” But his employment was never suspended or terminated.

“He Thinks He’s Untouchable.”

My Four Months as a Private Prison Guard: A Mother Jones Investigation | Mother Jones

A MoJo reporter gets a job as a prison guard at a private prison. The orientation was a bit disorienting.

The human resources director comes in and scolds Reynolds for napping. He perks up when she tells us that if we recruit a friend to work here, we’ll get 500 bucks. She gives us an assortment of other tips: Don’t eat the food given to inmates; don’t have sex with them or you could be fined $10,000 or get 10 years at hard labor; try not to get sick because we don’t get paid sick time. If we have friends or relatives incarcerated here, we need to report it. She hands out fridge magnets with the number of a hotline to use if we feel suicidal or start fighting with our families. We get three counseling sessions for free.

This is one crazy story. Epic reporting. My Four Months as a Private Prison Guard, by Shane Bauer, at MoJo.

Andre Fenton, comeback memory player of the year

06/13/2016 WOODS HOLE, MA Dr. Andre Fenton (cq) poses for a photo at the Marine Biological Laboratories in Woods Hole. (Aram Boghosian for The Boston Globe)

06/13/2016 WOODS HOLE, MA Dr. Andre Fenton (cq) poses for a photo at the Marine Biological Laboratories in Woods Hole. (Aram Boghosian for The Boston Globe)

Carl Zimmer on memory researcher Andre Fenton, comeback researcher of the year.

In an age when we get a lot of our medical news in click-baity headlines and hasty tweets, it’s easy to believe that scientific research is constantly barreling forward like a jet. The saga of PKMzeta shows just how contorted the true path of science can be. Fenton and Sacktor have worked together with what some of their colleagues consider a near-obsession for 14 years on PKMzeta. And after all that work, and years of setbacks, they feel like only now are they just able to start figuring out what this molecule does to let us form memories.

“Now we know it’s important,” Fenton said in a recent interview. “But what is it actually doing? I can tell you it’s crucial biochemically, but you shouldn’t feel satisfied that you understand memory any better. Because you don’t. We still don’t know what it means for memory.”

Get the rest at Stat: Memory researchers were rebuffed by science, and came roaring back, by Carl Zimmer.

Felix Salmon: Peter Thiel’s campaign against Gawker is a template for crushing media

Salmon makes a strong and highly unsettling argument:

The next step, after the Hogan verdict, was for Thiel to go public. After the enormous damages were announced and the long appeals process creaked into action, it started to become obvious that Gawker would need to raise more capital in order to continue to be able to fight the case. (In the worst case scenario, it would need to put up a $50 million bond.) Gawker had already sold some new stock in January; there was talk of doing the same thing again. With cash, Gawker could fight the Hogan verdict, get it reduced or even thrown out entirely, and carry on as a going concern.

But then the Thiel bombshell dropped. The Hogan case, it turned out, wasn’t a war in which Gawker could emerge victorious; instead, it was merely a battle in a much larger fight against an opponent with effectively unlimited resources.

Gawker could continue to fight the Hogan case; it could even win that case outright, on appeal. But even if Hogan went away, Thiel would not. Thiel’s lawsuits would not end, and Thiel’s pockets are deeper than Denton’s. Gawker’s future is indeed grim: it can’t afford to fight an indefinite number of lawsuits, since fighting even frivolous suits is an expensive game.

The result is that investing in Gawker right now is a very unattractive proposition, since any investor knows that they will be fighting a years-long battle with a single-minded billionaire who doesn’t care about how much money he spends on the fight. And if Gawker can’t raise any new money to continue to fight the Hogan case, then its corporate end might be closer than anybody thinks. The company’s money-spinning sites like Gizmodo and Lifehacker will live on, somehow: they have value to potential purchasers, and are assets which can be sold in satisfaction of a financial judgment. But Gawker Media, the unique and fearless media organization led by Nick Denton, is truly staring down an existential threat, with no obvious way out.

It gets worse. If Thiel’s strategy works against Gawker, it could be used by any billionaire against any media organization. Sheldon Adelson, Donald Trump, the list goes on and on. Up until now, they’ve mostly been content suing news organizations as plaintiffs, over stories which name them. But Thiel has shown them how to go thermonuclear: bankroll other lawsuits, as many as it takes, and bankrupt the news organization that way. Very few companies have the legal wherewithal to withstand such a barrage.

Thiel, by funding Hulk Hogan, has managed to change the world.

Forget Zika for a moment. The future is in Africa’s yellow fever outbreak. 

From Maryn McKenna at NatGeo:

Zika virus has been earning all the headlines, because it is already affecting Americans—including 300 pregnant women, according to a new CDC estimate—and is expected to move into U.S. mosquitoes as the summer bug season starts.

But outside the United States, another mosquito-borne disease is attracting the world’s attention, and it may predict more than Zika does about how epidemics will move around the world in the future. The disease is yellow fever, the epicenter of the outbreak is Angola, and the force that could push it around the globe is Chinese investment in the developing world.

Get the rest at McKenna’s Germination.

The Selfish Gene is a static meme, and that ain’t science

Richard Dawkins’s “The Selfish Gene,” book and meme, is now 40 years old. Has it served its purpose? And how do we talk about whether it has?

When I argued not long ago that his ‘selfish-gene’ model obscures richer emerging views of genetics and evolution, the responses ranged from enthusiastic agreement to objections both civil and savage. I naturally drew pleasure from the excited agreement, which came from both laypeople and scientists. I was truly heartened by the constructive criticism from scientists and others who took issue with the idea of retiring the selfish-gene meme. Their challenge expanded my thinking, helped me to improve the essay in a revised form, and, best of all, spurred a wide-ranging, open-minded discussion full of mutual inquiry, reconsideration, and great humour.

Alas, a more vitriolic line of objection also arose. I first ran into it in a tweet from the Harvard psychologist Steven Pinker, describing me as ‘another confused journalist who hates genetic evolution but doesn’t understand it’. I remain puzzled that Pinker concluded I hate genetic evolution, whose wonders and riddles I have written about for several years.

In another tweet Pinker asked:

Why do sci journalists think it’s profound that genes are switched on/off? Do they think that all cells produce all proteins all the time?

Which leads me to ask:

Why does Steven Pinker think it’s shallow when science writers tell readers about things that scientists know but others do not?

As a writer and teacher, surely Pinker is in the business of sharing knowledge and ideas. Why should I not do the same? Gene expression might be old hat to scientists. But the power of this most essential biological dynamic strikes many other curious and intelligent people as something new and, as the responses to my essay made clear, deeply exciting. In his blog, population geneticist Jerry Coyne also accused me of trying to sell old things as new. And Dawkins, after graciously acknowledging that I ‘made scarcely a single point’ that he would not have been glad to make himself, rather less graciously accused me of writing about well-established facts, ideas, and dynamics as a way of ‘manufacturing controversy’.

It soon became apparent that some people are willing to defend the selfish gene idea as if guarding a holy kingdom. The rhetoric was astounding. Coyne averred that ‘if [Dobbs] were an honest man’, I would apologise for my story, ‘but we know that won’t happen!’ His followers accused me of bringing ‘other agendas’; of tabloid-style sensationalism, intentional distortion, and intellectual dishonesty; of being a journalistic buffoon; of being cheap, shoddy, and crass; of writing in the pay of creationists. One commenter said that rather than question him, I should behold Richard Dawkins and cower.

I suppose I can see how people might write such stuff if they’ve spent too much time defending science from attacks from creationists or others hostile to empirical endeavour. But it’s an odd way to respond to ideas submitted in good faith.

My feelings here matter little. What does matter is the effect such attacks have on others looking on, and on open discussions about genetics and evolution at a time when genetics has plentiful reason to regroup and reconsider instead of defend and attack. Such hostility seems designed to quell rather than enrich discussion; to freeze rather than advance understanding; above all, to silence. It worked. While evolutionary researchers who objected to my article rightly felt free to speak up, few scholars who agreed with me felt similarly comfortable. Although many expressed agreement privately, almost no one did so in the open. I can’t blame them; who wants to leap into a bloody shark pool?

On the upside, some people did object to this noise. Many, including people I’d never heard from before, wrote to me privately to say they thought the Pinker-Coyne-Dawkins response was sclerotic and counterproductive. And a few protested publicly. One commenter at my blog, a reader named Agga, expressed his dismay this way:

As a complete layperson, my interpretation of the Aeon article was this. Wow, evolution makes sense now! Before, as someone who has only taken high-school biology and an undergrad short module in heritability, I was taught that evolution worked in this manner: genes randomly mutate and the most favourable carry on through survival and reproduction.… This extremely simplified view is what is being taught, and what is implied from the common narrative of evolution. To find out that evolution has these mechanisms such as epigenetics and the mechanism that changes the locust and bees without changing the gene first, that just blew my mind! The whole thing is so much more intuitive; and explains much better how such complexity and specialisation could arise, through interaction with the environment in this way.

Agga also took issue with the complaint about gene expression being old hat:

[P]erhaps all you PhDs should remember that you do not know what the layman’s view is, what the common narrative or the [selfish gene] metaphor actually does, how it is interpreted. You don’t know this because you already know about the complexity. I never knew, until now. Isn’t that a shame?

Dawkins, responding to my article, asked: ‘Does Dobbs really expect me to be surprised [by the power of gene expression]?’

I did not. I was not writing for Dawkins. I was writing, as Dawkins himself writes, for a general audience, and for the same reasons Dawkins does: to share the wonders of genes and evolution with people who might not know of them; to put those wonders into context in a way that might generate new understanding; to share and make memorable not a brand-new fact or finding but a fresh reframing of the story of how evolution works. Like the ideas Dawkins described in The Selfish Gene, the ideas I wrote about had been discussed by scientists for years or decades but had reached few outside academe. And as Dawkins had done originally, I argued that a different characterisation of the gene’s role in evolution – in my case, one emphasising the gene’s sociability rather than its selfishness – could tell a story about evolution that was still accurate but more layered, exciting, and consistent with recent research.

For Agga and others, including many scientists, this worked. The article stirred in them, if I might borrow the title of Dawkins’s newest book, an appetite for wonder.

Some might object that science is not about stories but facts. But science is always a story about facts. That’s why scientific papers have discussion sections. And there are always different stories to tell about any given set of facts. That’s why people offer various and overlapping hypotheses and theories. Science’s true job and modus operandi is to find and articulate the most compelling story consistent with the facts. Naturally, scientists must revise and replace these stories as research reveals new facts.

Dawkins knows this, and in The Selfish Gene he tells one hell of a compelling story. But in an age when research is showing the genome’s conversation with the outside world, and with itself, to be far more complex than we ever supposed, does the selfish-gene story remain the most compelling one we can offer about genetics and evolution?

That’s my question. Many of Dawkins’s defenders dismiss it by insisting that Dawkins’s selfish gene is not merely a meme or a metaphor, but a parsimonious statement of fact that deserves the status of a fact itself. But it’s not a fact. It’s a story about facts.

In truth, we can hardly even agree on what a gene is. George Williams himself, the biologist who was the selfish gene’s true father, clearly recognised this. In Adaptation and Natural Selection, his pivotal 1966 book that laid out the gene-centric theory which Dawkins would popularise a decade later, Williams noted that our DNA is passed on in repeatedly, continuously ‘dissociated fragments’, and that the ‘potentially immortal’ object of selection – ‘the gene’ that Dawkins would soon call selfish – was an abstraction that could be defined in any number of ways. Williams emphasised this by citing no less than four definitions of ‘the gene’ (as he himself framed it, in quotes) in the very paragraph in which he called it potentially immortal. He defined the gene as ‘“the gene” that is treated in the abstract discussions of population genetics’; as a rare ‘segment or chromosome’, protected from common forces of recombination, ‘[that] behaves in a way that approximates the population genetics of a single gene’; as ‘that which segregates and recombines with appreciable frequency’, and which is ‘potentially immortal’; and finally and most broadly, as ‘any hereditary information’ for which there is selection.

That was 48 years ago. As the Yale geneticist Mark Gerstein and others demonstrate in the article ‘What Is a Gene?’ (2012), the ensuing half-century has added only more definitions to Williams’s conservative list.

In the century since it was named, ‘the gene’ has been a thing vague, variable, and often abstract. Is it wise to insist that something so slippery and mutable, so variously conceived, is not just ‘potentially immortal’, as Williams proposed, but literally immortal? Science does not advance by insisting that certain of its stories are immortal. It moves by allowing stories to evolve. And sometimes by letting them die.


This post is adapted from my contribution to “Dead or Alive: Is it tie to kill off the idea of the ‘selfish gene’?”,  a roundtable discussion of “Die, Selfish Gene, Die,” at Aeon. I’m thankful to John Dupré, Laura Hercher, Karen James, and Robert Sapolsky, who also contributed to the roundtable; to Aeon, for publishing both pieces; and to all the geneticists, writers, and others who engaged in constructive discussion of the articles.  Thanks also to Philip Ball, whose smart, calm post on this today spurred me to revisit the issue and post this. 

Is the gene still selfish after all these years?



Philip Ball on the strange, often savage defense of a 40-year-old meme past its prime:

The fact is that genes can only propagate with the help of other genes. John Maynard Smith recognized this in the 1970s, and so did Dawkins. He chose the wrong title, and the wrong metaphor, and wrote a superb book about them.

I find it curious that there’s such strong opposition to that fact. For example, I’m struck by how, when the selfish-gene trope is questioned, defenders will often point to rare circumstances in which genes really do seem to be “selfish” – which is to say, where propagation of a gene might be deleterious to the success of an organism (and thus to its other genes). It is hard to overstate how bizarre this argument is. It justifies a metaphor designed to explain the genetic basis of evolutionary adaptation by pointing to a situation in which genetic selection is non-adaptive. You might equally then say that, when genes are truly selfish, natural selection doesn’t “work”.

What is meant to be implied in such arguments is that this selfishness is always there lurking in the character of genes, but that it is usually masked and only bursts free in exceptional circumstances. That, of course, underlines the peril of such an anthropomorphic metaphor in the first place. The notion that genes have any “true” character is absurd. Genetic evolution is a hugely complex process – far more complex than Dawkins could have known in 1976. And complex processes are rarely served well by simple, reductionistic metaphors….

There is an old guard of evolutionary theorists, battle-scarred from bouts with creationism and intelligent design, who are never going to accept this, and who will never see why the selfish gene has become a hindrance to understanding. They can be recognized from the emotive hysteria of their responses to any such suggestion – you will find them clearly identified in David Dobbs’ excellent response to criticisms of his Aeon article on the subject. It is a shame that they have fallen into such a polarized attitude. As the other responses to David’s piece attest, the argument has moved on.

Photo: Grasshopper (Acrididae), Barbilla National Park, Costa Rica. Photo by Piotr Naskrecki/Minden Pictures/Corbis


How A Billionaire Used a Wrestler to Get Revenge and Silence Gawker

Angel investor Caterina Fake gets real on Peter Thiel:

Generally, people avoid frivolous lawsuits because it often exposes them to as much scrutiny as those they sue, so what is significant about this case is that by funding Hogan behind the scenes, Thiel could get his revenge, escape exposure, and influence the outcome of the case. Hogan’s lawyers made decisions against Hogan’s best interests, withdrawing a claim that would have required Gawker’s insurance company to pay damages rather than the company itself–a move that made Nick Denton, Gawker Media’s founder and CEO, suspect that a Silicon Valley millionaire was behind the suit. Gawker Media may or may not survive the suit in which Hogan was handed down a judgement of $140 million, which the publisher has appealed.

My hope is that the high profile of this case will hasten legal reform. The ethical dodginess of this type of funding is well known–after all champerty was once illegal.

Further reading (via Fake’s post):

Gawker-Thiel-Hogan lawsuit article on Forbes

Why Denton thought Thiel was behind the lawsuit article on re|code

Arms Race: Law Firms and the Litigation Funding Boom article in American Lawyer