Please Hold

She called 911 for an ambulance. She got a nightmare instead.

When Pamela Hogan phoned 911 from her Seattle apartment, she was suffering from knee pain so intense she couldn’t stand up. She had been trapped in her bed all day, unable to eat, drink or get to the bathroom. Worried and alone, Hogan thought an ambulance would come quickly and take her to the hospital.

She was mistaken.

Seattle no longer is capping ambulance wait times for certain 911 patients, tracking those waits or penalizing its ambulance contractor when they run long.

Rather than send Hogan help right away, the Fire Department routed her to a nurse in Texas who determined her crisis didn’t need immediate attention.

So the 71-year-old, a retired executive assistant who loved cooking casseroles, watching “Judge Judy” and listening to The Pointer Sisters, waited one hour for a nurse-ordered ambulance, according to call recordings and court documents.

Two hours. Three hours. Four hours, phoning 911 back several times and telling the Fire Department about a heart condition. Ten hours.

By the time an ambulance arrived at Hogan’s building, it was the middle of the night and she wasn’t answering her phone. The ambulance left without her.

Weeks later, her body was found decomposing on the floor of her bedroom.

It’s not clear Hogan’s wait is what killed her, but her estate has sued and her experience raises questions about Seattle’s relationship with its for-profit ambulance contractor, American Medical Response, which also provides the city’s 911 nurse line.

“More checks and balances and accountability need to happen,” said Josephine Ensign, a professor emeritus at the University of Washington School of Nursing who called Hogan’s case concerning and upsetting. “Seattle can do better.”

Seattle and AMR have denied the lawsuit’s wrongful death allegations and say the nurse line is generally working as intended. They say it’s reducing strain on hospitals and ambulances by diverting low-level patients to more appropriate care.

But most Seattle callers triaged by the nurse line are still being sent to hospitals in AMR ambulances, rather than being diverted, program data reveals. And officials have exempted those nurse-ordered rides, like Hogan’s, from city standards that normally require the company’s ambulances to arrive on time.

It’s possible that Hogan’s experience was an aberration. But the city stopped tracking ambulance waits like hers in 2022, so officials have no way to know. [...]

***

Hogan’s wait started when she dialed 911 on the afternoon of April 8, 2022.

“I’ve got really bad knees because of rheumatoid arthritis and there is damage to them as well, and I’ve gotten to the point where I can’t get up,” she told the Fire Department dispatcher who answered, according to a recording of the call obtained through a public records request. “I’d like to go to the ER and have them look at my knees.”

Hogan had used 911 for emergencies before, assuming this time would be the same. Instead, her call was transferred to the nurse line operated by AMR’s parent company, Global Medical Response, from a call center outside Dallas.

“I’m going to bring the nurse on the line here and let them kind of help figure out the best course of action,” the Fire Department dispatcher said.

Hogan told the nurse she had been stuck in bed all day and had completely filled an adult diaper, according to a recording disclosed by AMR in the Hogan litigation. She described her pain intensity as 10 out of 10.

“I will get someone out to you,” the nurse said. “To get you to the hospital.”

Then the nurse ordered an ambulance, recommending care within four hours, according to another recording disclosed in the Hogan litigation. An AMR dispatcher in Seattle said it would take three to four.

Neither of them told Hogan, who was no longer on the phone.

Strained system

In the years before Hogan’s emergency, the Seattle Fire Department and AMR were dealing with a mounting number of 911 calls from patients with low-level needs, said Michael Sayre, the Fire Department’s medical director.

A sore throat. Anxiety. A stomachache. Patients who don’t really require emergency transport and care. The city received 44% more low-level medical calls in 2021 than in 2017, according to Fire Department records.

Few 911 patients receive lifesaving interventions and most emergency room visits are for nonemergency issues, national research has shown. People sometimes dial 911 not because they’re in imminent danger but because they’re not sure whether they’re sick or not, Sayre said.

These patients put pressure on the Fire Department’s dispatchers, who work long, grueling shifts. Such calls often involve homeless people or other patients without regular doctors, noted Ensign, whose decades of Seattle-based work has focused on health and social inequities.

“They don’t know what else to do, so they call 911,” Sayre said.

For acute 911 calls, the Fire Department sends its own highly trained crews. They can transport patients in red Medic One ambulances or hand the patients off to AMR emergency medical technicians in white ambulances.

For less-acute calls, the department may simply send AMR. One way or another, the company handles most of Seattle’s ambulance responses, approximately 50,000 annually. [...]

New program

Like other cities that use ambulance contractors for 911 callers, Seattle allows AMR to bill patients. In return, the company must meet standards for patient care: For years, its ambulances were supposed to arrive within 11½ minutes for more-urgent calls and one hour for less-urgent calls, at least 90% of the time.

But in the wake of the COVID pandemic, AMR was struggling with ambulance staffing in Seattle, arriving late for many of its 911 patients and paying a price, Fire Department records show. The city assessed the company almost $1.4 million in contract penalties for ambulance delays in 2021.

Enter the Nurse Navigation program, which Seattle and AMR leaders said would relieve that strain and improve ambulance response times in the city by diverting low-level callers to cheaper, better solutions. When it launched with fanfare in February 2022, then-Mayor Bruce Harrell called it “a strong example” of how to make a system “more efficient and ensure better care at the same time.”

The idea wasn’t new: King County had been using a 911 nurse line on a smaller scale for years, and cities across the world were experimenting. When implemented well, these programs can deliver real benefits, many experts say.

Seattle preferred not to hire its own nurses, said Sayre, the medical director, citing the costs involved. So the Fire Department turned to AMR, which agreed to triage the city’s callers almost for free. AMR had launched Nurse Navigation in Washington, D.C., in 2018 and had been attracting positive attention. [...]

Requirements removed

Before Nurse Navigation, patients like Hogan could expect assistance in under an hour. That changed in 2022 with an amendment to AMR’s contract that gave nurse-ordered ambulances a reprieve from any response-time standards.

Seattle and AMR officials say this made sense, because the nurse line is allowing ambulances to prioritize critical patients over stable ones. The company is no longer incurring late penalties for its Seattle responses still subject to time standards, a representative said, citing the nurse line and better recruiting.

But the city removed a significant guardrail when it removed standards for an entire category of ambulance rides, experts contend. Last year, more than 4,600 rides ordered were completely exempt from time standards and contractual penalties.

“Your community’s leaders may think 10-hour waits are OK,” said Matt Zavadsky, a nationally recognized health care administrator who managed a 911 system and helped start a nurse line in Fort Worth. “If your community’s leaders are not OK with that, you need a contract that prevents that.”

Instead, Seattle has left itself in the dark. Response times for nurse-ordered ambulances are excluded from AMR’s monthly reports to the Fire Department, so the city doesn’t know how long patients like Hogan are waiting.

by Daniel Beekman, Seattle Times |  Read more:

Image: Jennifer Luxton / The Seattle Times

The Plastic Surgeon Summit

We’re in a plastic surgery “renaissance period.”

Dr. Yannis Alexandrides: It is busier than ever. There’s a remarkable year-on-year demand increase that we see in surgical procedures, especially for the face, but also for the body. This is a trend that we have seen through the pandemic, but it has accelerated the last year.

Dr. Akshay Sanan: I think plastic surgery is in a renaissance period right now because of people publicly talking about it. Plastic surgery is now part of your wellness armamentarium. People used to flex what gym they went to, that they had a trainer, and now plastic surgery is part of that flex. People love to rock that they had their eyes done or their face and neck done or their body done. It’s just part of the cultural shift that we’re seeing.

Dr. Jason Champagne: This is where social media comes into play, camera phones and Zoom meetings. You see yourself from all these different angles nowadays that maybe you didn’t notice in the past.

Dr. Emily Hu: I find it very generational: Those who grew up in the social media era with a lot of sharing and openness are also very open about telling their friends [about the work they’ve had done].

Sanan: There’s a shift in consumer or patient habits. More people in their late 30s, early 40s, they’re choosing surgery earlier to age gracefully instead of waiting until things are advanced. They’re like, “I’m not going to wait until it drops down further. I just want to be hot in my 40s.”

Dr. John Diaz: It used to be that not everyone had access to a plastic surgeon. That was reserved within the realm of the elite. Well, not anymore. I have celebrities, executives, and business owners come in — but also teachers and waiters. There’s this democratization of attractiveness.

Dr. Paul Afrooz: Patients are very educated these days. They know what they’re looking for, they know what realistic results are, and they have the ability to do a lot of background research and understand who does things at an elite level. [...]

Let’s get into it: Why are we talking so much about facelifts this year?

Diaz: Facelifts have absolutely exploded for a few reasons. A lot of women see celebrities and influencers suddenly looking incredible, and they want to know how. Think about Kris Jenner — she had a huge impact when her pictures came out. And now it’s brought awareness to the fact that we have the technology to be able to take a young-looking woman and make her look better with surgery, without making her look fake. That was a real challenge 20 years ago.

Alexandrides: Kris Jenner was a very hot topic the last few months. Definitely a lot of the patients I see here take her as, let’s say, a model on how they want to look, because she looks fresh, but she doesn’t look pulled. She looks younger, and she looks happy, and you cannot see the scars, at least not in these pictures that we see.

Hu: I can’t tell you how many of my patients are like, “Yeah, my mom had a facelift. She was so scary. I’m never doing a facelift.” I mean, that was their response because they see their mom all bruised and scary looking.

Dr. Mark Murphy: Facelifts historically had a stereotypical “plastic surgery” look. Now people have realized, “I can look like myself 15 years ago and not have to look like a circus freak for it.” It’s become very digestible for patients. Social media is a huge driver behind it. Well, that, and the techniques are better.

So what’s actually new or changing about facelifts?

Dr. Mark Mani: We call it the golden age of facelift surgery. It’s primarily because of the success of the deep plane facelift.

Dr. David Shafer: There’s nothing new about [the deep plane facelift] as a procedure. It’s just very sophisticated marketing that’s being done now, and there are refinements to the procedures. But it’s not some plastic surgeon who’s marketing it now as some magic procedure that he came up with that nobody else does.

Mani: [A version of] the first deep plane lifts was performed in the late 1960s by a surgeon named Tord Skoog in Sweden [though the name came later]. I have his textbook and can show you results that would stand up to the best deep plane surgeons today. It’s not the procedure, it’s the surgeon, and facelift surgery, among all surgeries in plastic surgery, is an art form.

Afrooz: A surgeon named Sam Hamra — he just passed, but a wonderful human being, an extraordinary thinker, an extraordinary surgeon — first coined the phrase “deep plane facelift” in a 1990 paper and laid out some building blocks of the procedure. Just like everything else in plastic surgery, we stand on the giants before us.

Dr. Michael Stein: There are two main facelift techniques: deep plane and SMAS plication. The deep plane facelift is where you cut the layer under the skin called the SMAS, dissect underneath it, and tighten it in addition to the skin. In the SMAS facelift, instead of cutting and elevating the SMAS, you suture it to itself to tighten it from over top.

Dr. Amir Karam: The majority of surgeons, up until recently, have been doing the traditional SMAS technique, which is more or less horizontally pulling the face sideways, and that was leading to a very unnatural look.

Mani: I was the surgeon who wrote the most-read facelift academic article that convinced other surgeons to do deep plane facelifts. It was an article in Aesthetic Surgery Journal in 2016, where I detailed the specific anatomic reasons that deep plane is better.

Stein: The people who only do deep plane facelifts say they have a more longitudinal result, and vice versa. But the truth is, a good result is a good result. It depends more on the surgeon versus technique. A good facelift is a good facelift.

Facelifts aren’t done evolving.

Karam: The consumer is driving surgeons to create better and better results. So there’s been a massive increase in interest for surgeons to level up their strategies surgically and learn new techniques that are not new but new to them.

Afrooz: Even my facelift today is better than my facelift was one year ago. When you hone in on one thing as your career, you’re just constantly looking for ways to improve. It’s the cumulative effect of small subtleties over time and practice that you notice nuanced improvements to your results. One might assume that a deep plane facelift in one surgeon’s hands is the same as it is in another’s, but I’m here to tell you that it’s very much not the same.

Dr. Daniel Gould: There are new layers that we’re adding into the surgery. We’re recognizing the importance of the mid-face and volume position there. I’m recognizing adding fat to the mouth and the areas around the mouth, the chin, because all these areas have been neglected. We are now nailing all the low-hanging fruit: We’re nailing the neck, we’re nailing the face, we’re nailing the temple and the brows. Now it’s time to move forward and continue to innovate and push the limits of what we can really do in facial rejuvenation.

Mani: What I’ve developed is called the scarless lift, and it’s basically a deep plane facelift without a scar in front of the ear, with an endoscope. The endoscopic procedure involves a hidden incision within the hair, a short one behind the ear, and sometimes one under the chin. I still do about 60% open [non-endoscopic], but a good percentage of my facelifts are scarless endoscopic. The results are more beautiful because you don’t have to worry about the scar, and the vectors of lifting are better.

Alexandrides: I don’t think this will be now, “OK, let’s forget about facelifts, let’s move to something else.” What will probably happen is that people will discover intricate little different techniques and say, “You have the facelift that is done like that.” I have patients who ask me very technical questions: How do you design your scar around your ear?

Stein: Facelift surgery has survived the test of time. Every year there are new machines designed to tighten skin, and for some patients with mild laxity, they may see nice results. The truth is though, if you have jowls or droopy skin of the face and neck, the only thing that’s really going to give you the best bang for your buck and directly address your laxity is a facelift.

by Bustle Editors, Bustle |  Read more:

Image: uncredited

Tomorrow’s Smart Pills Will Deliver Drugs and Take Biopsies

One day soon, a doctor might prescribe a pill that doesn’t just deliver medicine but also reports back on what it finds inside you—and then takes actions based on its findings.

Instead of scheduling an endoscopy or CT scan, you’d swallow an electronic capsule smaller than a multivitamin. As it travels through your digestive system, it could check tissue health, look for cancerous changes, and send data to your doctor. It could even release drugs exactly where they’re needed or snip a tiny biopsy sample before passing harmlessly out of your body.

This dream of a do-it-all pill is driving a surge of research into ingestible electronics: smart capsules designed to monitor and even treat disease from inside the gastrointestinal (GI) tract. The stakes are high. GI diseases affect tens of millions of people worldwide, including such ailments as inflammatory bowel disease, celiac disease, and small intestinal bacterial overgrowth. Diagnosis often involves a frustrating maze of blood tests, imaging, and invasive endoscopy. Treatments, meanwhile, can bring serious side effects because drugs affect the whole body, not just the troubled gut.

If capsules could handle much of that work—streamlining diagnosis, delivering targeted therapies, and sparing patients repeated invasive procedures—they could transform care. Over the past 20 years, researchers have built a growing tool kit of ingestible devices, some already in clinical use. These capsule-shaped devices typically contain sensors, circuitry, a power source, and sometimes a communication module, all enclosed in a biocompatible shell. But the next leap forward is still in development: autonomous capsules that can both sense and act, releasing a drug or taking a tissue sample.

That’s the challenge that our lab—the MEMS Sensors and Actuators Laboratory (MSAL) at the University of Maryland, College Park—is tackling. Drawing on decades of advances in microelectromechanical systems (MEMS), we’re building swallowable devices that integrate sensors, actuators, and wireless links in packages that are small and safe enough for patients. The hurdles are considerable: power, miniaturization, biocompatibility, and reliability, to name a few. But the potential payoff will be a new era of personalized and minimally invasive medicine, delivered by something as simple as a pill you can swallow at home. [...]

Targeted drug delivery is one of the most compelling applications for ingestible capsules. Many drugs for GI conditions—such as biologics for inflammatory bowel disease—can cause serious side effects that limit both dosage and duration of treatment. A promising alternative is delivering a drug directly to the diseased tissue. This localized approach boosts the drug’s concentration at the target site while reducing its spread throughout the body, which improves effectiveness and minimizes side effects. The challenge is engineering a device that can both recognize diseased tissue and deliver medication quickly and precisely.

With other labs making great progress on the sensing side, we’ve devoted our energy to designing devices that can deliver the medicine. We’ve developed miniature actuators—tiny moving parts—that meet strict criteria for use inside the body: low power, small size, biocompatibility, and long shelf life.

Some of our designs use soft and flexible polymer “cantilevers” with attached microneedle systems that pop out from the capsule with enough force to release a drug, but without harming the intestinal tissue. While hollow microneedles can directly inject drugs into the intestinal lining, we’ve also demonstrated prototypes that use the microneedles for anchoring drug payloads, allowing the capsule to release a larger dose of medication that dissolves at an exact location over time.

In other experimental designs, we had the microneedles themselves dissolve after injecting a drug. In still others, we used microscale 3D printing to tailor the structure of the microneedles and control how quickly a drug is released—providing either a slow and sustained dose or a fast delivery. With this 3D printing, we created rigid microneedles that penetrate the mucosal lining and gradually diffuse the drug into the tissue, and soft microneedles that compress when the cantilever pushes them against the tissue, forcing the drug out all at once.

by Reza Ghodssi, Justin Stine, Luke Beardslee, IEEE Spectrum |  Read more:

Image: Maximilian Franz/Engineering at Maryland Magazine

Embryo Selection Company Herasight Goes All In On Eugenics

Multiple commercial companies are now offering polygenic embryo selection on a wide range of traits, including genetic predictors of behavior and IQ. I’ve previously written about the methodological unknowns around this technology but I haven’t commented on the ethics. I think having a child is a very personal decision and it’s not my place to tell people how to do it. But the new embryo selection company, Herasight, has started advocating for eugenic societal norms that I find disturbing and worth raising alarm over. Because this is a fraught topic, I’ll start with some basic definitions.

What is eugenics?

Eugenics is an ideology that advocates for conditioning reproductive rights on the perceived genetic quality of the parents. Francis Galton, the father of eugenics, declared that eugenics’ “first object is to check the birth-rate of the Unfit, instead of allowing them to come into being”. This goal was to be achieved through social stigma and, if necessary, by force. The Eugenics Education Society, for instance, advocated for education, segregation, and — “perhaps” — compulsory sterilization to prevent the “unfit and degenerate” from reproducing:

A core component of defining “the unfit” was heredity. Eugenicists are not just interested in improving people’s phenotypes — a goal that is widely shared by modern society — but the future genotypic distribution. The genetic stock. This is why eugenic policies historically focus on sterilization, including the sterilization of unaffected relatives who harbor genotype but not phenotype. If someone commits a crime, they face time in prison for their actions, but under eugenic reasoning their law-abiding sibling or child is also suspect and should be stigmatized (or forcefully prevented) from passing on deficient genetic material.

A simple two-part test for eugenics is then: (1) Is it concerned with the future genetic stock? (2) Is it advocating for restricted reproduction, either through stigma or force, for those deemed genetically inferior?

Is embryo selection eugenics?

I have publicly resisted applying the “eugenics” label to embryo selection writ large and I continue to do so. Embryo selection is a tool and its use is morally complex. A couple can choose to have embryo screening for a variety of reasons ranging from frivolous (“we want to have a blue eyed baby”) to widely supported (“we carry a recessive mutation that would be fatal in our baby”), none of which have eugenic intent. Embryo selection can even be an anti-eugenic tool, as in the case of high-risk couples who have already decided against having children. If embryo selection technology allows them to lower the risk to a comfortable level and have a child they would otherwise have avoided, then the outcome is literally the opposite of eugenic selection: “unfit” individuals (at least as they see themselves) now have an incentive to produce more offspring than they would have. In practice, IVF remains a physically and emotionally demanding procedure, and my guess is that individual eugenic intentions — the desire to select out unfit embryos with the specific motivation of improving the “genetic stock” of the population — are exceedingly rare.

Is Herasight advocating for eugenics?

While I do not think embryo selection is eugenic in itself, like any reproductive technology, it can be wielded for eugenic purposes. The new embryo selection company Herasight, in my opinion, is advocating for exactly that. To understand why, it is useful to first understand the theories put forth by Herasight’s director of scientific research and communication Jonathan Anomaly (in case you’re wondering, that is a chosen last name). Anomaly is a self-proclaimed eugenicist [Update: Anomaly has clarified that this description was not provided by him and he requested that it be removed]:

Prior to joining Herasight, Anomaly wrote extensively on the ethics of embryo selection, notably in a 2018 article titled “Defending eugenics”. How does Anomaly defend eugenics? First, he reiterates the classic position that eugenics is a resistance to the uncontrolled reproduction of the “unfit” (emphasis mine, throughout):

Darwin argued that social welfare programs for the poor and sick are a natural expression of our sympathy, but also a danger to future populations if they encourage people with serious congenital diseases and heritable traits like low levels of impulse control, intelligence, or empathy to reproduce at higher rates than other people in the population. Darwin feared that in developed nations “the reckless, degraded, and often vicious members of society, tend to increase at a quicker rate than the provident and generally virtuous members”

Anomaly goes on to sympathize with Darwin’s position and that of the classic eugenicists, arguing that “While Darwin’s language is shocking to contemporary readers, we should take him seriously”, later that “there is increasingly good evidence that Darwin was right to worry about demographic trends in developed countries”, and that we should “stop allowing [the Holocaust] to silence any discussion of the merits of eugenic thinking”.

Anomaly then proposes several potential eugenic interventions, one of which is a “parental licensing” scheme that prevents unfit parents from having children:

The typical response is for the state to step in and pay for all of these things, and in extreme cases to remove children from their parents and put them in foster care. But it would be more cost-effective to prevent unwanted pregnancies than treating their consequences, especially if we could achieve this goal by subsidizing the voluntary use of contraception. It may also be more desirable from the standpoint of future people.

The phrase “future people” figures repeatedly in Anomaly’s writing as a euphemism for the more conventional eugenic concept of genetic stock. This connection is made explicit when he explains the most compelling reason for supporting parental licensing:

The most compelling reason (though certainly not a decisive reason) for supporting parental licensing is that traits like impulse control, health, intelligence, and empathy have significant genetic components. What matters is not just that some parents are unwilling or unable to take care of their children; but that in many cases they are passing along an undesirable genetic endowment.

What are we really talking about here? Anomaly has proposed a technocratic rebranding of eugenic sterilization: instead of taking away your reproductive rights clinically, the state will take away your reproductive license and, if you still have children, impose “fines or other costs” (though Anomaly does not make the “other costs” explicit, eugenic sterilization is mentioned as an example in the very next sentence). How would the state decide who should lose their license? Anomaly explains:

For a parental licensing scheme to be fair, we would need to devise criteria that are effective at screening out only parents who impose significant risks of harm on their children or (through their children) on other people.

A fundamental normative principle of our society is that all members are created equal and endowed with unalienable rights. What Anomaly envisions instead is a society where the state can seize one of the most intimate of human freedoms — the right to become a parent — based on innate factors. How does the state determine whether a future child imposes significant risk on future people? By inspecting the biological makeup of the parents and identifying “undesirable genetic endowments” that will harm others “through their children”. This is a policy built explicitly on genetic desirability and undesirability, where those deemed genetically unfit are stripped of their rights to have children and/or fined for doing so — aka bog-standard coercive eugenics.

Today, Anomaly is the spokesperson for a company that screens parents for “undesirable genetic endowments” and, for a price, promises to boost their genetic desirability and their value to future people. It is easy to see how Herasight fits directly into the eugenic parental licensing scheme Anomaly proposed. Having an open eugenicist as the spokesperson for an embryo selection company seems, to me, akin to hiring Hannibal Lecter to do PR for a hospital, but perhaps Anomaly has radically changed his views since billing himself as a eugenicist in 2023?

Herasight (with Anomaly as first author) recently published a perspective white-paper on the ethics polygenic selection, from which we can glean their corporate position. The perspective outlines the potential benefits and harms of embryo selection. The very first positive benefit listed? The “benefits to future people”. While this section starts with a focus the welfare of individual children, it ends with the same societal motivations as classical eugenics: the social costs of the unfit on communities and the benefits of the fit to scientific innovation and the public good: [...]

When eugenics goes mainstream

Let’s review: eugenics has as a goal of limiting the birthrate of the “unfit” or “undesirable” for the benefit of the group. Anomaly describes himself as a eugenicist and explicitly echoes this goal through, among other policies, a parental licensing proposal. Anomaly now runs a genetic screening company. The company recently published a perspective paper advocating for the stigmatization of “unfit” parents who do not screen. Anomaly, as spokesperson, reiterates that their goal is indeed eugenics — “Yes, and it’s great!”. With any other person one could argue that they were clueless or trolling; but if anyone knows what eugenics means, it is a person who has spent the past decade defending it.

I have to say I am floored by how strange this all is. My personal take on embryo selection has been decidedly neutral. I think the expected gains are limited by the genetic architecture of the traits being scored and the companies are mostly fudging the numbers to look good. As noted above, I also think a common use of this technology will be to calm the nerves of parents who otherwise would have gone childless. So I have no actual concerns about changes to the genetic make-up of the population or genetic inequality or any of the other utopian/dystopian predictions. But I am concerned that the marketing around the technology revives and normalizes classic eugenic arguments: that society is divided into the genetically fit and the genetically unfit, and the latter need to be stigmatized away from parenthood for the benefit of the former. I am particularly disturbed by the giddiness with which Anomaly and Herasight have repeatedly courted eugenics-related controversy as part of their launch campaign.

Even stranger has been the response, or rather non-response, from the genetics community. Social science geneticists and organizations spent the past decade writing FAQs warning against the use of their methods and data for individual prediction and against genetic essentialism. Many conference presentations and seminars start with a section on the sordid history of eugenics and the sterilization programs in the US and Nazi Germany, vowing not to repeat the mistakes of the past. Now, a company is openly advocating for eugenics (in fact, a company with direct connections to these social science organizations) and these organizations are silent. It is hard not to conclude that the FAQs and warnings were just lip service. And if the experts aren’t raising alarms, why would the public be alarmed?

by Sasha Gusev, The Infinitesimal |  Read more:

Image: Anselm Kiefer, Die Ungeborenen (The Unborn), 2002

[ed. With neophyte Nazis seemingly everywhere these days, CRISPR advances, and technocrats who want to live forever, it's perhaps not surprising that eugenics would be making a comeback. Update: Jonathan Anomaly, director of scientific research and communication for Herasight and whose articles I criticize here, responds in a detailed comment. I recommend reading his response together with this post. Anomaly’s role in the company has also been clarified. See also: Have we leapt into commercial genetic testing without understanding it? (Ars Technica).]

I Regret to Inform You that the FDA is FDAing Again

I had high hopes and low expectations that the FDA under the new administration would be less paternalistic and more open to medical freedom. Instead, what we are getting is paternalism with different preferences. In particular, the FDA now appears to have a bizarre anti-vaccine fixation, particularly of the mRNA variety (disappointing but not surprising given the leadership of RFK Jr.).

The latest is that the FDA has issued a Refusal-to-File (RTF) letter to Moderna for their mRNA influenza vaccine, mRNA-1010. An RTF means the FDA has determined that the application is so deficient it doesn’t even warrant a review. RTF letters are not unheard of, but they’re rare—especially given that Moderna spent hundreds of millions of dollars running Phase 3 trials enrolling over 43,000 participants based on FDA guidance, and is now being told the (apparently) agreed-upon design was inadequate. [...]

In context, this looks like the regulatory rules of the game are being changed retroactively—a textbook example of regulatory uncertainty destroying option value. STAT News reports that Vinay Prasad personally handled the letter and overrode staff who were prepared to proceed with review. Moderna took the unusual step of publicly releasing Prasad’s letter—companies almost never do this, suggesting they’ve calculated the reputational risk of publicly fighting the FDA is lower than the cost of acquiescing.

Moreover, the comparator issue was discussed—and seemingly settled—beforehand. Moderna says the FDA agreed with the trial design in April 2024, and as recently as August 2025 suggested it would file the application and address comparator issues during the review process.

Finally, Moderna also provided immunogenicity and safety data from a separate Phase 3 study in adults 65+ comparing mRNA-1010 against a licensed high-dose flu vaccine, just as FDA had requested—yet the application was still refused.

What is most disturbing is not the specifics of this case but the arbitrariness and capriciousness of the process. The EU, Canada, and Australia have all accepted Moderna’s application for review. We may soon see an mRNA flu vaccine available across the developed world but not in the United States—not because it failed on safety or efficacy, but because FDA political leadership decided, after the fact, that the comparator choice they inherited was now unacceptable.

The irony is staggering. Moderna is an American company. Its mRNA platform was developed at record speed with billions in U.S. taxpayer support through Operation Warp Speed — the signature public health achievement of the first Trump administration. The same government that funded the creation of this technology is now dismantling it. In August, HHS canceled $500 million in BARDA contracts for mRNA vaccine development and terminated a separate $590 million contract with Moderna for an avian flu vaccine. Several states have introduced legislation to ban mRNA vaccines. Insanity.

The consequences are already visible. In January, Moderna’s CEO announced the company will no longer invest in new Phase 3 vaccine trials for infectious diseases: “You cannot make a return on investment if you don’t have access to the U.S. market.” Vaccines for Epstein-Barr virus, herpes, and shingles have been shelved. That’s what regulatory roulette buys you: a shrinking pipeline of medical innovation.

An administration that promised medical freedom is delivering medical nationalism: fewer options, less innovation, and a clear signal to every company considering pharmaceutical investment that the rules can change after the game is played. And this isn’t a one-product story. mRNA is a general-purpose platform with spillovers across infectious disease and vaccines for cancer; if the U.S. turns mRNA into a political third rail, the investment, talent, and manufacturing will migrate elsewhere. America built this capability, and we’re now choosing to export it—along with the health benefits.

by Alex Tabarrok, Marginal Revolution |  Read more:

Image: Brian Snyder/Reuters

[ed. See also: F.D.A. Refuses to Review Moderna Flu Vaccine (NYT); and, Trump official overruled FDA scientists to reject Moderna’s flu shot (Ars Technica).]

The Questionable Science Behind the Odd-Looking Football Helmets

The N.F.L. claims Guardian Caps reduce the risk of concussions. The company that makes them says, “It has nothing to do with concussions.”

The first time Jared Wilson, a New England Patriots offensive lineman, is seen on the Super Bowl broadcast on Sunday, some viewers may wonder why he has such a big helmet.

It’s called a Guardian Cap, and Mr. Wilson is among about two dozen National Football League players who have worn the helmet covering in games this season. Not for comfort or style. Even the company that makes the cap acknowledges that it’s bulky and ugly. Rather, Wilson and others have worn it for its purported safety benefits.

The N.F.L. claims the cartoonish caps reduce the risk of getting a concussion, convincing some players that they are worth wearing. The company that designed and manufactures Guardian Caps, though, makes no such claim.

“No helmet, headgear or chin strap can prevent or eliminate the risk of concussions or other serious head injuries while playing sports or otherwise,” the product’s disclaimer warns. Instead, the company says its caps blunt the impact of smaller hits to the head that are linked to long-term brain damage.

“It has nothing to do with concussions,” said Erin Hanson, a co-founder of Guardian Sports, the Atlanta-area company that makes the cap. “We call concussions ‘the C word.’ This is about reducing the impact of all those hits every time. That’s all that was.”

The disconnect between the N.F.L.’s claims about the Guardian Caps and what the company promises is emblematic of the messy line between promotion and protection, and the power of the N.F.L. to sway football coaches and players trying to insulate themselves from the dangers of the sport.

An endorsement by the N.F.L., the country’s most visible and powerful sports league, can generate millions of dollars in sales for equipment makers, including Guardian Sports. The N.F.L.’s embrace of the caps, beginning in 2022, has led to a surge in orders from youth leagues to pro teams. About half a million players at all levels now wear them, Guardian Sports said.

“Anything I can do to save my brain, save my head,” said Kevin Dotson, an offensive lineman on the Los Angeles Rams who has worn the cap in games since last season.

The league claimed that the Guardian Cap had helped reduce concussions by more than 50 percent, which has put the company in the awkward position of embracing the spirit of the endorsement while distancing itself from the facts of it. Further complicating the situation: The model worn by pro and college players, the NXT, is not the same as the company’s mass-market product, the XT, which retails for $75. That model has less padding than the NXT, and may be less effective at limiting the impact of hits to the head, studies have shown.

Ms. Hanson said the company had struggled with whether to promote the N.F.L.’s claims about concussions. It decided to do so because the N.F.L.’s boasts might persuade young players to use the product, even if the benefits are not comparable. (...)

Guardian Caps are the latest in a wave of products that have emerged since researchers linked the sport to the progressive brain disease known as chronic traumatic encephalopathy, or C.T.E. Scores of companies have introduced equipment that purports to prevent head injuries, from a silicone collar worn around a player’s neck, known as the Q-Collar, which is promoted as a way to give the brain an extra layer of cushioning, to G8RSkin Shiesty, a head covering that is worn under helmets and promises to significantly reduce concussion risk.

Independent neurologists are generally skeptical, if not outright dismissive, of the benefits of any product claiming to reduce concussions because few rigorous studies have been done to demonstrate their effectiveness.

Few products have received as much publicity as the Guardian Cap, though. Sales of the caps, which were introduced in 2012, took off after the company won the N.F.L.’s HeadHealthTECH Challenge in 2017 — two years after the league settled a lawsuit brought by more than 5,000 former players who accused the N.F.L. of hiding from them the dangers of concussions.

Guardian Sports received $20,000 from the league for additional testing, but the N.F.L.’s endorsement was priceless.

Orders for the caps from colleges, high schools and youth teams poured in. Nearly every college team in the top ranks practices with the caps. In 2021, researchers, including some affiliated with the N.F.L. and its players’ union, published a paper that said Guardian Caps reduced “head impact severity” by 9 percent.

That year, Guardian Sports introduced its NXT model, with an extra layer of padding for bigger, stronger players. The N.F.L. required linemen, tight ends and linebackers to wear them in training camp. In 2023, the mandate expanded to all contact practices, and running backs and fullbacks were added. Starting in 2024, wide receivers and defensive backs had to wear them in practices, and players could wear them in games. (...)

Researchers at Virginia Tech, which runs a well-regarded helmet-testing laboratory, found that players who wore the NXT version of the Guardian Cap experienced a 14 percent decline in rotational accelerations — basically, the turning of the head — and that their concussion risk was 34 percent lower than for players who wore only helmets.

The benefits were significantly lower for players who wore the XT, the model worn in youth leagues and high schools. Rotational acceleration was only 5 percent lower, and the concussion risk was reduced by 15 percent.

Stefan Duma, who leads the lab, said the smaller reductions, combined with better helmets and fewer full contact practices, suggested that the benefits of wearing the XT were negligible.

“We tested it thoroughly, and the benefits are just not there,” Dr. Duma said. “It’s all noise, no statistical difference in youth.”

Most parents and coaches, though, do not read research reports from testing labs, and there is little information on the Guardian Sports website that explains the difference in performance between the XT and NXT models. But looking at the testimonials on the website from Mr. Goodell and other N.F.L. luminaries, parents and coaches might believe they were buying the cap worn by the pros.

by Ken Belson, NY Times |  Read more:
Images: Audra Melton, NYT; Cooper Neill/Getty

What Actually Makes a Good Life

Harvard started following a group of 268 sophomores back in 1938—and continued to track them for decades—and eventually included their spouses and children too. The goal was to discover what leads to a thriving, happy life.

Robert Waldinger continues that work today as the Director of the Harvard Study on Adult Development. (He’s also a zen priest, by the way.) Here he shares insights on the key ingredients for living the good life.

via:

[ed. Road map to happiness (or at least more life satisfaction). Only 16 minutes of your time.]

Why Even the Healthiest People Hit a Wall at Age 70

Are we currently determining how much of aging is lifestyle changes and interventions and how much of it is basically your genetic destiny?

 

[Transcript:] We are constantly being bombarded with health and lifestyle advice at the moment. I feel like I cannot open my social media feeds without seeing adverts for supplements or diet plans or exercise regimes. And I think that this really is a distraction from the big goals of longevity science. This is a really difficult needle to thread when it comes to talking about this stuff because I'm a huge advocate for public health. I think if we could help people eat better, if we could help 'em do more exercise, if we could help 'em quit smoking, this would have enormous effects on our health, on our economies all around the world. But this sort of micro-optimization, these three-hour long health podcasts that people are digesting on a daily basis these days, I think we're really majoring in the minors. We're trying to absolutely eke out every last single thing when it comes to living healthily. And I think the problem is that there are real limits to what we can do with health advice. 

So for example, there was a study that came out recently that was all over my social media feeds. And the headline was that by eating the best possible diet, you can double your chance of aging healthily. But I decided to dig into the results table. The healthiest diet was something called the Alternative Healthy Eating Index or AHEI. And even the people who are sticking most closely to this best diet, according to this study, the top 20% of adherence to the AHEI, only 13.6% of them made it to 70 years old without any chronic diseases. That means that over 85% of the people sticking to the best diet, according to this study, got to the age of 70 with at least something wrong with them. And that shows us that optimizing diet only has so far it can go. 

We're not talking about immortality or living to 120 here. If you wanna be 70 years old and in good enough health to play with your grandkids, I cannot guarantee that you can do that no matter how good your diet is. And that's why we need longevity medicine to help keep people healthier for longer. And actually, I think even this idea of 120, 150-year-old lifespans, you know, immortality even as a word that's often thrown around, I think the main thing we're trying to do is get people to 80, 90 years old in good health. 'cause we already know that most people alive today, when they reach that age, are unfortunately gonna be frail. They're probably gonna be suffering from two or three or four different diseases simultaneously. And what we wanna do is try and keep people healthier for longer. And by doing that, they probably will live longer but kind of as a side effect. 

If you look at photographs of people from the past, they often look older than people in the present day who are the same age. And part of these are these terrible fashion choices that people made in the past. And we can look back and, you know, understand the mistakes they've made with hindsight. But part of that actually is aging biology. I think the fact that people can be different biological ages at the same chronological ages, something that's really quite intuitive. All of us know people who've waltzed into their 60s looking great and, you know, basically as fit as someone in their 40s or 50s. And we know similar people who have also gone into their 60s, but they're looking haggard, they've got multiple different diseases, they're already struggling through life. 

In the last decade, scientists have come up with various measures of what's called biological age as distinct from chronological age. So your chronological age is just how many candles there are on your birthday cake. And obviously, you know, most of us are familiar with that. But the idea of biological age is to look inside your cells, look inside your body, and work out how old you are on a biological level. Now we aren't perfect at doing this yet, but we do have a variety of different measures. We can use blood tests, we can use what are called epigenetic tests, or we can do things that are far more sort of basic and functional, how strong your grip is declines with age. And by comparing the value of something like your grip strength to an average person of a given age, we can assign you a biological age value. And I think the ones that are getting the most buzz at the moment within the scientific community, but also all around the internet, are these epigenetic age tests. 

So the way that this works is that you'll take a blood test or a saliva sample and scientists will measure something about your epigenome. So the genome is your DNA, it's the instruction manual of life. And the epigenome is a layer of chemistry that sits on top of your genome. If you think of your DNA is that instruction manual, then the epigenome is the notes in the margin. It's the little sticky notes that have been stuck on the side and they tell the cell which DNA to use at which particular time. And we know that there are changes to this epigenome as you get older. And so by measuring the changes in the epigenome, you can assign someone a biological age. 

At the moment, these epigene clocks are a really great research tool. They're really deepening our understanding of biological aging in the lab. I think the problem with these tests as applied to individuals is we don't know enough about exactly what they're telling us. We don't know what these individual changes in epigenetic marks mean. We know they're correlated with age, but what we don't know is if they're causally related. And in particular, we don't know if you intervene, if you make a change in your lifestyle, if you start taking a certain supplement and that reduces your biological age. We don't know whether that actually means you're gonna dilate or whether it means you're gonna stay healthier for longer or whether you've done something that's kind of adjacent to that. And so we need to do more research to understand if we can causally impact these epigenetic measures. (...)

Machine learning and artificial intelligence are gonna be hugely, hugely important in understanding the biology of aging. Because the body is such a complicated system that in order to really understand it, we're gonna need these vast computer models to try and decode the data for us. The challenge is that what machine learning can do at the moment is it can identify correlations. So it can identify things that are associated with aging, but it can't necessarily tell us what's causing something else. So for example, in the case of these epigenetic clocks, the parts of the epigenome that change with age have been identified because they correlate. But what we don't know is if you intervene in any one of these individual epigenetic marks, if you move it in the direction of something younger, does that actually make people healthier? And so what we need to do is more experiments where we try and work out if we can intervene in these epigenetic, in these biological clocks, can we make people live healthier for longer? 

Over the last 10 or 15 years, scientists have really started to understand the fundamental underlying biology of the aging process. And they broke this down into 12 what are called hallmarks of aging. One of those hallmarks is the accumulation of senescent cells. Now senescent is just a biological technical term for old. These are cells that accumulate in all of our bodies as the years go by. And scientists have noticed that these cells seem to drive a range of different diseases as we get older. And so the idea was what if we could remove these cells and leave the rest of the cells of the body intact? Could that slow down or even partially reverse the aging process? And scientists identified drugs called it senolytic drugs. 

These are drugs that kill those senescent cells and they tried them out in mice and they do indeed effectively make the mice biologically younger. So if you give mice a course of senolytic drugs, it removes those senescent cells from their body. And firstly, it makes them live a bit longer. That's a good thing if you're slowing down the aging process, the basic thing you want to see. But it's not dragging out that period of frailty at the end of life. It's keeping the mice healthier for longer so they get less cancer, they get less heart disease, they get fewer cataracts. The mice are also less frail. They basically send the mice to a tiny mouse-scale gym in these experiments. And the mice that have been given the drugs, they can run further and faster on the mousey treadmills that they try them out on. 

It also seems to reverse some of the cognitive effects that come along with aging. So if you put an older mouse in a maze, it's often a bit anxious, doesn't really want to explore. Whereas a younger mouse is desperate to, you know, run around and find the cheese or whatever it is mice doing in mazes. And by giving them these senolytic drugs, you can unlock some of that youthful curiosity. And finally, these mice just look great. You do not need to be an expert mouse biologist to see which one has had the pills and which one hasn't. They've got thicker fur. They've got plumper skin. They've got brighter eyes. They've got less fat on their bodies. And what this shows us is that by targeting the fundamental processes of aging, by identifying something like senescent cells that drives a whole range of age-related problems, we can hit much perhaps even all of the aging process with a single treatment. 

Senescent cells are, of course, only one of these 12 hallmarks of aging. And I think in order to both understand and treat the aging process, we're potentially gonna only treatments for many, perhaps even all of those hallmarks. There's never gonna be a single magic pill that can just make you live forever. Aging is much, much more complicated than that. But by understanding this relatively short list of underlying processes, maybe we can come up with 12, 20 different treatments that can have a really big effect on how long we live. 

One of the most exciting ideas in longevity science at the moment is what's called cellular reprogramming. I sometimes describe this as a treatment that has fallen through a wormhole from the future. This is the idea that we can reset the biological clock inside of our cells. And the idea first came about in the mid 2000s because there was a scientist called Shinya Yamanaka who was trying to find out how to turn regular adult body cells all the way back to the very beginning of their biological existence. And Yamanaka and his team were able to identify four genes that you could insert into a cell and turn back that biological clock. 

Now, he was interested in this from the point of view of creating stem cells, a cell that can create any other kind of cell in the body, which we might be able to use for tissue repair in future. But scientists also noticed, as well as turning back the developmental clock on these cells, it also turns back the aging clock, cells that are given these four Yamanaka factors actually are biologically younger than cells that haven't had the treatment. And so what scientists decided to do was insert these Yamanaka factor genes into mice. 

Now if you do this in a naive way, so there's genes active all the time, it's actually very bad news for the mice, unfortunately. because these stem cells, although they're very powerful in terms of what kind of cell they can become, they are useless at being a liver cell or being a heart cell. And so the mice very quickly died of organ failure. But if you activate these genes only transiently, and the way that scientists did it the first time successfully was essentially to activate them at weekends. So they produced these genes in such a way that they could be activated with the drug and they gave the mice the drug for two days of the week, and then gave them five days off so the Yamanaka factors were then suppressed. They found that this was enough to turn back the biological clock in those cells, but without turning back the developmental clock and turn them into these stem cells. And that meant the mice stayed a little bit healthier. We now know that they can live a little bit longer with this treatment too.

Now the real challenge is that this is a gene therapy treatment. It involves delivering four different genes to every single cell in your body. The question is can we, with our puny 2020s biotechnology, make this into a viable treatment, a pill even, that we can actually use in human beings? I really think this idea of cellular reprogramming appeals to a particular tech billionaire sort of mentality. The idea that we can go in and edit the code of life and reprogram our biological age, it's a hugely powerful concept. And if this works, the fact that you can turn back the biological clock all the way to zero, this really is a very, very cool idea. And that's what's led various different billionaires from the Bay Area to invest huge, huge amounts of money in this. 

Altos Labs is the biggest so-called startup in this space. And I wouldn't really call it a startup 'cause it's got funding of $3 billion from amongst other people, Jeff Bezos, the founder of Amazon. Now I'm very excited about this because I think $3 billion is enough to have a good go and see if we can turn this into a viable human treatment. My only concern is that epigenetics is only one of those hallmarks of aging. And so it might be the case that we solve aging inside our individual cells, but we leave other parts of the aging process intact. (...)

Probably the quickest short-term wins in longevity science are going to be repurposed existing drugs. And the reason for this is because we spent many, many years developing these drugs. We understand how they work in humans. We understand a bit about their safety profile. And because these molecules already exist, we've just tried them out in mice, in, you know, various organisms in the lab and found that a subset of them do indeed slow down the aging process. The first trial of a longevity drug that was proposed in humans was for a drug called metformin, which is a pre-existing drug that we prescribe actually for diabetes in this case, and has some indications that it might slow down the aging process in people. (...)

I think one of the ones that's got the most buzz around it at the moment is a drug called rapamycin. This is a drug that's been given for organ transplants. It's sometimes used to coat stents, which these little things that you stick in the arteries around your heart to expand them if you've got a contraction of those arteries that's restricting the blood supply. But we also know from experiments in the lab that can make all kinds of different organisms live longer, everything from single-cell yeast, to worms, to flies, to mice, to marmoset, which are primates. They're very, very evolutionarily close to us as one of the latest results. 

Rapamycin has this really incredible story. It was first isolated in bacteria from a soil sample from Easter Island, which is known as Rapa Nui in the local Polynesians. That's where the drug gets its name. And when it was first isolated, it was discovered to be antifungal. It could stop fungal cells from growing. So that was what we thought we'd use it for initially. But when the scientists started playing around with in the lab, they realized it didn't just stop fungal cells from growing. It also stopped many other kinds of cells as well, things like up to and including human cells. And so the slight disadvantage was that if you used it as an antifungal agent, it would also stop your immune cells from being able to divide, which is obviously be a bit of a sort of counterintuitive way to try and treat a fungal disease. So scientists decided to use it as an immune suppressant. It can stop your immune system from going haywire when you get an organ transplant, for example, and rejecting that new organ. 

It is also developed as an anti-cancer drug. So if it can stop cells dividing or cancer as cells dividing out of control. But the way that rapamycin works is it targets a fundamental central component of cellular metabolism. And we noticed that that seemed to be very, very important in the aging process. And so by tamping it down by less than you would do in a patient where you're trying to suppress their immune system, you can actually rather than stopping the cell dividing entirely, you can make it enter a state where it's much more efficient in its use of resources. It starts this process called autophagy, which is Greek for self-eating, autophagy. And that means it consumes old damaged proteins, and then recycles them into fresh new ones. And that actually is a critical process in slowing down aging, biologically speaking. And in 2009, we found out for the first time that by giving it to mice late in life, you could actually extend their remaining lifespan. They live by 10 or 15% longer. And this was a really incredible result. 

This was the first time a drug had been shown to slow down aging in mammals. And accordingly, scientists have become very, very excited about it. And we've now tried it in loads of different contexts and loads of different animals and loads of different organisms at loads of different times in life. You can even wait until very late in a mouse lifespan to give it rapamycin and you still see most of that same lifespan extension effect. And that's fantastic news potentially for us humans because not all of us, unfortunately, can start taking a drug from birth 'cause most of us were born quite a long time ago. But rapamycin still works even if you give it to mice who are the equivalent of 60 or 70 years old in human terms. And that means that for those of us who are already aged a little bit, Rapamycin could still help us potentially. And there are already biohackers out there trying this out for themselves, hopefully with the help of a doctor to make sure that they're doing everything as safely as possible to try and extend their healthy life. And so the question is: should we do a human trial of rapamycin to find out if it can slow down the aging process in people as well? (...)

We've already got dozens of ideas in the lab for ways to slow down, maybe even reverse the age of things like mice and cells in a dish. And that means we've got a lot of shots on goal. I think it'll be wildly unlucky if none of the things that slow down aging in the lab actually translate to human beings. That doesn't mean that most of them will work, probably most of them won't, but we only need one or two of them to succeed and really make a big difference. And I think a great example of this is GLP-1 drugs, the ozempics, the things that are allowing people to suddenly lose a huge amount of weight. We've been looking for decades for these weight loss drugs, and now we finally found them. It's shown that these breakthroughs are possible, they can come out of left field. And all we need to do in some cases is a human trial to find out if these drugs actually work in people. 

And what that means is that, you know, the average person on planet earth is under the age of 40. They've probably got 40 or 50 years of life expectancy left depending on the country that they live in. And that's an awful lot of time for science to happen. And if then in the next 5 or 10 years, we do put funding toward these human trials, we might have those first longevity drugs that might make you live one or two or five years longer. And that gives scientists even more time to develop the next treatment. And if we think about some more advanced treatments, not just drugs, things like stem cell therapy or gene therapy, those things can sound pretty sci-fi. But actually, we know that these things are already being deployed in hospitals and clinics around the world. They're being deployed for specific serious diseases, for example, where we know that a single gene can be a problem and we can go in and fix that gene and give a child a much better chance at a long, healthy life. 

But as we learn how these technologies work in the context of these serious diseases, we're gonna learn how to make them effective. And most importantly, we're gonna learn how to make them safe. And so we could imagine doing longevity gene edits in human beings, perhaps not in the next five years, but I think it'll be foolish to bet against it happening in the next 20 years, for example. 

by Andrew Steele, The Big Think |  Read more:

Image: Yamanka factors via:

[ed. See also: Researchers Are Using A.I. to Decode the Human Genome (NYT).]

Tatiana Schlossberg Dies at 35

Tatiana Schlossberg, an environmental journalist and a daughter of Caroline Kennedy — and granddaughter of President John F. Kennedy — whose harrowing essay about her rare and aggressive blood cancer, published in The New Yorker magazine in November, drew worldwide sympathy and praise for Ms. Schlossberg’s courage and raw honesty, died on Tuesday. She was 35.

Her death was announced in an Instagram post by the John F. Kennedy Library Foundation, signed by her family. It did not say where she died.

Titled “A Battle With My Blood,” the essay appeared online on Nov. 22, the 62nd anniversary of her grandfather’s assassination. (It appeared in print in the Dec. 8 issue of the magazine with a different headline, “A Further Shore.”) In it, Ms. Schlossberg wrote of how she learned of her cancer after the birth of her daughter in May 2024. There was something off about her blood count, her doctor noticed, telling her, “It could just be something related to pregnancy and delivery, or it could be leukemia.”

It was leukemia, with a rare mutation. Ms. Schlossberg had a new baby, and a 2-year-old son.

“I did not — could not — believe that they were talking about me,” she wrote. “I had swum a mile in the pool the day before, nine months pregnant. I wasn’t sick. I didn’t feel sick. I was actually one of the healthiest people I knew. I regularly ran five to ten miles in Central Park. I once swam three miles across the Hudson River — eerily, to raise money for the Leukemia and Lymphoma Society.”

She added, “This could not possibly be my life.”

She wrote of months of chemotherapy and a postpartum hemorrhage, from which she almost bled to death, followed by more chemo and then a stem cell transplant — a Hail Mary pass that might cure her. Her older sister, Rose Schlossberg, was a match and would donate her cells. Her brother, Jack Schlossberg, now running for Congress in New York’s 12th district, was a half-match; nonetheless he pressed the doctors, asking if a half-match might be good enough. Could he donate, too? (He could not.)

After the transplant, when Ms. Schlossberg’s hair fell out, Jack shaved his head in solidarity. She wore scarves to cover her bare scalp; when her son came to visit her in the hospital, he did, too.

She was never able to fully care for her daughter — to feed, diaper or bathe her — because of the risk of infection, and her treatments had kept her away from home for nearly half of her daughter’s first year of life.

“I don’t know who, really, she thinks I am,” Ms. Schlossberg wrote, “and whether she will feel or remember, when I am gone, that I am her mother.”

She went into remission, had more chemo, relapsed and joined a clinical trial. There were blood transfusions, another stem cell transplant, from an unrelated donor, more chemo, more setbacks. She went into remission again, relapsed, joined another clinical trial and contracted a form of the Epstein-Barr virus. The donated cells attacked her own, a condition called graft-versus-host disease. When she came home after a stint in the hospital in October, she was too weak to pick up her children.

Her oncologist told her that he thought he could, maybe, keep her alive for another year.

“For my whole life, I have tried to be good,” she wrote, “to be a good student and a good sister and a good daughter, and to protect my mother and never make her upset or angry. Now I have added a new tragedy to her life, to our family’s life, and there’s nothing I can do to stop it.”

Tragedy, of course, has trailed the Kennedy family for decades. Caroline Kennedy, a former ambassador to Australia and Japan, was just 5 when her father was assassinated on Nov. 22, 1963; she was 10 when her uncle Robert F. Kennedy, a presidential candidate in the Democratic primary of 1968, was murdered. Her brother, John F. Kennedy Jr., died in 1999, when the plane he was piloting crashed off Martha’s Vineyard, killing him, his wife, Carolyn Bessette Kennedy, and her sister, Lauren Bessette. He was 38 years old, and Tatiana had been a flower girl at his wedding three years earlier.

Having grown up in the glare of her parents’ glamour, and her family’s tragedies, Ms. Kennedy largely succeeded in giving her own children a life out of the spotlight — a relatively normal, if privileged, upbringing, along with a call to public service that was the Kennedy legacy.

by Penelope Green, NY Times |  Read more:

Image: Sonia Moskowitz/Globe Photos/ZUMA
[ed. A strong, intelligent woman. And another Kennedy tragedy. See also: A Battle With My Blood (New Yorker).]

The Depressed Person

The depressed person was interrible and unceasing emotional pain, and the impossibility of sharing or articulating this pain was itself a component of the pain and a contributing factor in its essential horror. 

Despairing, then, of describing the emotional pain itself, the depressed person hoped at least to be able to express something of its contextits shape and texture, as it were-by recounting circumstances related to its etiology. The depressed person's parents, for example, who had divorced when she was a child, had used her as a pawn in the sick games they played, as in when the depressed person had required orthodonture and each parent had claimed-not without some cause, the depressed person always inserted, given the Medicean legal ambiguities of the divorce settlement-that the other should pay for it. Both parents were well-off, and each had privately expressed to the depressed person a willingness, if push came to shove, to bite the bullet and pay, explaining that it was a matter not of money or dentition but of "principle." And the depressed person always took care, when as an adult she attempted to describe to a supportive friend the venomous struggle over the cost of her orthodonture and that struggle's legacy of emotional pain for her, to concede that it may well truly have appeared to each parent to have been, in fact, a matter of "principle," though unfortunately not a "principle" that took into account their daughter's feelings at receiving the emotional message that scoring petty points off each other was more important to her parents than her own maxillofacial health and thus constituted, if considered from a certain perspective, a form of neglect or abandonment or even outright abuse, an abuse clearly connected-here she nearly always inserted that her therapist concurred with this assessment-to the bottomless, chronic adult despair she suffered every day and felt hopelessly trapped in.

The approximately half-dozen friends whom her therapist-who had earned both a terminal graduate degree and a medical degree-referred to as the depressed person's Support System tended to be either female acquaintances from childhood or else girls she had roomed with at various stages of her school career, nurturing and comparatively undamaged women who now lived in all manner of different cities and whom the depressed person often had not laid eyes on in years and years, and whom she called late in the evening, long-distance, for badly needed sharing and support and just a few well-chosen words to help her get some realistic perspective on the day's despair and get centered and gather together the strength to fight through the emotional agony of the next day, and to whom, when she telephoned, the depressed person always apologized for dragging them down or coming off as boring or self-pitying or repellent or taking them away from their active, vibrant, largely pain-free long-distance lives. She was, in addition, also always extremely careful to share with the friends in her Support System her belief that it would be whiny and pathetic to play what she derisively called the "Blame Game" and blame her constant and indescribable adult pain on her parents' traumatic divorce or their cynical use of her. Her parents had, after all-as her therapist had helped the depressed person to see---done the very best they could do with the emotional resources they'd had at the time. And she had, the depressed person always inserted, laughing weakly, eventually gotten the orthoprecedence and required her (i.e., the friend) to get off the telephone. 

The feelings of shame and inadequacy the depressed person experienced about calling members of her Support System long-distance late at night and burdening them with her clumsy attempts to describe at least the contextual texture of her emotional agony were an issue on which she and her therapist were currently doing a great deal of work in their time together. The depressed person confessed that when whatever supportive friend she was sharing with finally confessed that she (i.e., the friend) was dreadfully sorry but there was no helping it she absolutely had to get off the telephone, and had verbally detached the depressed person's needy fingers from her pantcuff and returned to the demands of her full, vibrant long-distance life, the depressed person always sat there listening to the empty apian drone of the dial tone feeling even more isolated and inadequate and unempathized-with than she had before she'd called. The depressed person confessed to her therapist that when she reached out long-distance to a member of her Support System she almost always imagined that she could detect, in the friend's increasingly long silences and/or repetitions of encouraging cliches, the boredom and abstract guilt people always feel when someone is clinging to them and being a joyless burden. The depressed person confessed that she could well imagine each "friend" wincing now when the telephone rang late at night, or during the conversation looking impatiently at the clock or directing silent gestures and facial expressions communicating her boredom and frustration and helpless entrapment to all the other people in the room with her, the expressive gestures becoming more desperate and extreme as the depressed person went on and on and on. The depressed person's therapist's most noticeable unconscious personal habit or tic consisted of placing the tips of all her fingers together in her lap and manipulating them idly as she listened supportively, so that her mated hands formed various enclosing shapes-e.g., cube, sphere, cone, right cylinder-and then seeming to study or contemplate them. The depressed person disliked the habit, though she was quick to admit that this was chiefly because it drew her attention to the therapist's fingers and fingernails and caused her to compare them with her own. donture she'd needed. The former acquaintances and classmates who composed her Support System often told the depressed person that they just wished she could be a little less hard on herself, to which the depressed person responded by bursting involuntarily into tears and telling them that she knew all too well that she was one of those dreaded types of everyone's grim acquaintance who call at inconvenient times and just go on and on about themselves. The depressed person said that she was all too excruciatingly aware of what a joyless burden she was, and during the calls she always made it a point to express the enormous gratitude she felt at having a friend she could call and get nurturing and support from, however briefly, before the demands of that friend's full, joyful, active life took understandable.

The depressed person shared that she could remember, all too clearly, how at her third boarding school she had once watched her roommate talk to some boy on their room's telephone as she (i.e., the roommate) made faces and gestures of entrapped repulsion and boredom with the call, this popular, attractive, and self-assured roommate finally directing at the depressed person an exaggerated pantomime of someone knocking on a door until the depressed person understood that she was to open their room's door and step outside and knock loudly on it so as to give the roommate an excuse to end the call. The depressed person had shared this traumatic memory with members of her Support System and had tried to articulate how bottomlessly horrible she had felt it would have been to have been that nameless pathetic boy on the phone and how now, as a legacy of that experience, she dreaded, more than almost anything, the thought of ever being someone you had to appeal silently to someone nearby to help you contrive an excuse to get off the phone with. The depressed person would implore each supportive friend to tell her the very moment she (i.e., the friend) was getting bored or frustrated or repelled or felt she (i.e., the friend) had other more urgent or interesting things to attend to, to please for God's sake be utterly candid and frank and not spend one moment longer on the phone than she was absolutely glad to spend. The depressed person knew perfectly well, of course, she assured the therapist;' how such a request could all too possibly be heard not as an invitation to get off the telephone at will but actually as a needy, manipulative plea not to get off the telephone - never get off - the telephone.

by David Foster Wallace, Harper's |  Read more (pdf):

Image: uncredited

[ed. Hadn't seen this essay before, but it got me wondering how it might relate to Good Old Neon:]

***

My whole life I’ve been a fraud. I’m not exaggerating. Pretty much all I’ve ever done all the time is try to create a certain impression of me in other people. Mostly to be liked or admired. It’s a little more complicated than that, maybe. But when you come right down to it it’s to be liked, loved. Admired, approved of, applauded, whatever. You get the idea. I did well in school, but deep down the whole thing’s motive wasn’t to learn or improve myself but just to do well, to get good grades and make sports teams and perform well. To have a good transcript or varsity letters to show people. I didn’t enjoy it much because I was always scared I wouldn’t do well enough. The fear made me work really hard, so I’d always do well and end up getting what I wanted. But then, once I got the best grade or made All City or got Angela Mead to let me put my hand on her breast, I wouldn’t feel much of anything except maybe fear that I wouldn’t be able to get it again.The next time or next thing I wanted. I remember being down in the rec room in Angela Mead’s basement on the couch and having her let me get my hand up under her blouse and not even really feeling the soft aliveness or whatever of her breast because all I was doing was thinking, ‘Now I’m the guy that Mead let get to second with her.’ Later that seemed so sad. This was in middle school. She was a very big-hearted, quiet, selfcontained, thoughtful girl — she’s a veterinarian now, with her own Good Old Neon practice — and I never even really saw her, I couldn’t see anything except who I might be in her eyes, this cheerleader and probably number two or three among the most desirable girls in middle school that year. She was much more than that, she was beyond all that adolescent ranking and popularity crap, but I never really let her be or saw her as more, although I put up a very good front as somebody who could have deep conversations and really wanted to know and understand who she was inside. 

Later I was in analysis, I tried analysis like almost everybody else then in their late twenties who’d made some money or had a family or whatever they thought they wanted and still didn’t feel that they were happy. A lot of people I knew tried it. It didn’t really work, although it did make everyone sound more aware of their own problems and added some useful vocabulary and concepts to the way we all had to talk to each other to fit in and sound a certain way. You know what I mean. I was in regional advertising at the time in Chicago, having made the jump from media buyer for a large consulting firm, and at only twenty-nine I’d made creative associate, and verily as they say I was a fair-haired boy and on the fast track but wasn’t happy at all, whatever happy means, but of course I didn’t say this to anybody because it was such a cliché — ‘Tears of a Clown,’ ‘Richard Cory,’ etc. — and the circle of people who seemed important to me seemed much more dry, oblique and contemptuous of clichés than that, and so of course I spent all my time trying to get them to think I was dry and jaded as well, doing things like yawning and looking at my nails and saying things like, ‘Am I happy? is one of those questions that, if it has got to be asked, more or less dictates its own answer,’ etc. Putting in all this time and energy to create a certain impression and get approval or acceptance that then I felt nothing about because it didn’t have anything to do with who I really was inside, and I was disgusted with myself for always being such a fraud, but I couldn’t seem to help it. Here are some of the various things I tried: EST, riding a ten-speed to Nova Scotia and back, hypnosis, cocaine, sacro-cervical chiropractic, joining a charismatic church, jogging, pro bono work for the Ad Council, meditation classes, the Masons, analysis, the Landmark Forum, the 142 David Foster Wallace Course in Miracles, a right-brain drawing workshop, celibacy, collecting and restoring vintage Corvettes, and trying to sleep with a different girl every night for two straight months (I racked up a total of thirty-six for sixty-one and also got chlamydia, which I told friends about, acting like I was embarrassed but secretly expecting most of them to be impressed — which, under the cover of making a lot of jokes at my expense, I think they were — but for the most part the two months just made me feel shallow and predatory, plus I missed a great deal of sleep and was a wreck at work — that was also the period I tried cocaine). I know this part is boring and probably boring you, by the way, but it gets a lot more interesting when I get to the part where I kill myself and discover what happens immediately after a person dies. In terms of the list, psychoanalysis was pretty much the last thing I tried.

The analyst I saw was OK, a big soft older guy with a big ginger mustache and a pleasant, sort of informal manner. I’m not sure I remember him alive too well. He was a fairly good listener, and seemed interested and sympathetic in a slightly distant way. At first I suspected he didn’t like me or was uneasy around me. I don’t think he was used to patients who were already aware of what their real problem was. He was also a bit of a pill-pusher. I balked at trying antidepressants, I just couldn’t see myself taking pills to try to be less of a fraud. I said that even if they worked, how would I know if it was me or the pills? By that time I already knew I was a fraud. I knew what my problem was. I just couldn’t seem to stop. I remember I spent maybe the first twenty times or so in analysis acting all open and candid but in reality sort of fencing with him or leading him around by the nose, basically showing him that I wasn’t just another one of those patients who stumbled in with no clue what their real problem was or who were totally out of touch with the truth about themselves. When you come right down to it, I was trying to show him that I was at least as smart as he was and that there wasn’t much of anything he was going to see about me that I hadn’t already seen and figured out. And yet I wanted help and really was there to try to get help. I didn’t even tell him how unhappy I was until five or six months into the analysis, mostly because Oblivion 143 I didn’t want to seem like just another whining, self-absorbed yuppie, even though I think even then I was on some level conscious that that’s all I really was, deep down.  (more...)  ~ Good Old Neon