ethics Archives - Longreads https://longreads.com/tag/ethics/ Longreads : The best longform stories on the web Fri, 26 May 2023 14:35:13 +0000 en-US hourly 1 https://longreads.com/wp-content/uploads/2017/01/longreads-logo-sm-rgb-150x150.png ethics Archives - Longreads https://longreads.com/tag/ethics/ 32 32 211646052 Clarence Thomas and the Billionaire https://longreads.com/2023/04/06/clarence-thomas-and-the-billionaire/ Thu, 06 Apr 2023 17:04:16 +0000 https://longreads.com/?p=188926 Today in the recurring series “America is Broken” — meaning, the news — three reporters at Pro Publica reveal that Supreme Court Justice Clarence Thomas has accepted lavish gifts from Harlan Crow, a billionaire Republican donor. Thomas has flown on Crow’s private jet many times, gone on vacations to Indonesia and New Zealand on Crow’s yacht, and spent time at Crow’s compound in the Adirondacks. In doing so, Thomas has violated norms pertaining to judges’ conduct and possibly broken federal law:

Soon after Crow met Thomas three decades ago, he began lavishing the justice with gifts, including a $19,000 Bible that belonged to Frederick Douglass, which Thomas disclosed. Recently, Crow gave Thomas a portrait of the justice and his wife, according to Tarabay, who painted it. Crow’s foundation also gave $105,000 to Yale Law School, Thomas’ alma mater, for the “Justice Thomas Portrait Fund,” tax filings show.

Crow said that he and his wife have funded a number of projects that celebrate Thomas. “We believe it is important to make sure as many people as possible learn about him, remember him and understand the ideals for which he stands,” he said.

To trace Thomas’ trips around the world on Crow’s superyacht, ProPublica spoke to more than 15 former yacht workers and tour guides and obtained records documenting the ship’s travels.

On the Indonesia trip in the summer of 2019, Thomas flew to the country on Crow’s jet, according to another passenger on the plane. Clarence and Ginni Thomas were traveling with Crow and his wife, Kathy. Crow’s yacht, the Michaela Rose, decked out with motorboats and a giant inflatable rubber duck, met the travelers at a fishing town on the island of Flores.

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Paging Dr. House: A Medical Mysteries Reading List https://longreads.com/2023/03/28/medical-mysteries-reading-list/ Tue, 28 Mar 2023 10:00:00 +0000 https://longreads.com/?p=188379 Half a plaster mask of a human face and a syringe — both magenta — sit against a bright blue backgroundOnce upon a time, I wanted to be a doctor. Never mind my terrible grades in all things science. Never mind that I decided this in my second year of college, after deciding that the music school that I’d wanted for years wasn’t for me. It was 2006. It was the age of Dr. Gregory […]]]> Half a plaster mask of a human face and a syringe — both magenta — sit against a bright blue background

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Once upon a time, I wanted to be a doctor. Never mind my terrible grades in all things science. Never mind that I decided this in my second year of college, after deciding that the music school that I’d wanted for years wasn’t for me. It was 2006. It was the age of Dr. Gregory House. 

I love a good medical drama. My mother, a nurse, raised me on ER and General Hospital, always pointing out all the plot lines that “would never happen in real life” but were really cool to watch on TV. My mother credits ER with pushing her toward her decades-long career in the operating room. So when I, a poor lost college sophomore who had gone to school to play French horn (French horn!) and found it wasn’t what I thought it would be, I did what I knew best to do and turned to TV. And on TV, I found House

House had it all: a painkiller-addicted doctor with a smart mouth and a slap-worthy face, medical mysteries solved via CSI-style case-of-the-week format, and a beleaguered crew of sidekick physicians whose instincts were never quite as good as House’s. I would spend each episode studying the setup and trying to unravel what the medical culprit could be before the ultimate reveal. Instead of realizing that what I might want to be was a writer with a good plot, I missed the mark and decided I wanted to be a doctor. 

Reader, I did not become a doctor. (That fizzled out after one year of biology classes and a stint working in a local nursing home.) But I remain a lifelong medical mystery buff. Here, then, are a few of my recent long-form favorites — enjoy the game of whatdunnit. 

Swamp Boy (Kris Newby, Now This News, October 2022)

One day, a 14-year-old boy with no previous physical or mental issues informs his parents that he is the “evil, damned son of the devil” and he needs to kill himself before he destroys them all. Thus begins the onset of a massive medical manhunt to uncover exactly what is causing the boy’s psychosis and physical symptoms, which include OCD, shortness of breath, chronic pain, frequent urination, intense headaches, the belief that he had green vines growing under his skin, the belief that he was a bird, and the belief that the family cat was ordering him to kill everyone around him — including the family fish. 

Complete with vivid graphic-novel-styled art illustrating some of the reported hallucinations, this piece has it all, including a father’s fight against the medical establishment and an ending you’ll never see coming. In other words, it’s about as close as one can get to a real-life episode of House

Meanwhile, back at home, now more than seven months after his son’s first psychotic breakdown, Scott could finally clear his mind, and began to focus his analytical skills on Michael’s case.

To the medical experts, his son had been a ten-inch-tall stack of paper annotated with clinical notes. Each expert had examined one piece of Michael—his brain, his stomach, his heart, his immune system, his gut, his spine, his skin, his eyes. Scott, meanwhile, was determined to analyze Michael as a whole. “I knew I had to figure out what was wrong, or I’d lose my son,” he said.

It was during one of his many conversations with doctors about Michael’s potential treatment that Scott had an epiphany: Maybe no one could help their son because they were treating the wrong illness.

What Happened to the Girls in Le Roy (Susan Dominus, The New York Times Magazine, March 2012)

On an ordinary day in Le Roy, New York, a high school cheerleader begins twitching. Another cheerleader develops tics a week later. And another after that; and another after that. It spreads past the cheerleaders and on to the art kids, a boy, kids in neighboring schools. Is there something in the water? Is it those mysterious bins labeled with hazardous waste from a nearby factory? Is it that strange orange ooze coming up from the ground on the football field? Or is it all in their heads? 

Featuring media vans, Dr. Drew appearances, familial finger-pointing, women’s least favorite H-word (hysteria), and a cameo from legal crusader Erin Brockovich, Dominus’s reporting takes us into the mystery that consumed a small Northeastern town, while still making the science accessible to lay readers. 

How could one person’s illness be reflected in another person’s neural pathways, playing a trick on consciousness, convincing the host that it originated in her own body? In the last decade, scientists have begun to explore the concept that regions in our brain once thought to activate only our own activity or sensations are also firing what are known as mirror neurons when we witness someone else perform an action or feel a sensation. Mass psychogenic illness could be thought of as the maladaptive version of the kind of empathy that finds expression in actual physical sensation: the contagious yawn or sympathetic nausea or the sibling who grabs his own finger when he sees his brother’s bleed.

The Pre-Pandemic Puzzle (W. Pate McMichael, St. Louis Magazine, August 2007)

No, not that pandemic. Pate McMichael looks back at the teenager who may have died of AIDS more than a decade before HIV gripped the nation. But where did the virus come from? How did a young boy who was not a drug user, had not left the state, and never received a blood transfusion contract a virus that wouldn’t be detected in the United States for another decade? Furthermore, why did the news break in the mainstream media before the scientists who first identified the strain even had a chance to understand what was in their lab?  

This piece combines two of my favorite things: a medical mystery and an ethical quandary. It pulls back the curtain on how the scientific establishment studies new diseases and how and when they release that information to the public. Add in that historical lens — doctors seeing a new and potentially terrifying disease in the 1960s, the echoes of Hurricane Katrina in Pate McMichael’s 2007 writing — and you’ve got a winner. 

A few years later, in 1973, Elvin-Lewis and Witte presented Robert R.’s case at a lymphology conference and published a journal article on his systemic chlamydia in The Journal of Lymphology. The paper they presented actually raised as many questions as it answered. Why had Chlamydia spread throughout the body, when it normally stayed near the port of entry? And why did this young man have these purplish, malignant lesions called Kaposi’s sarcoma, as the alert pathologist had discovered during the autopsy? Kaposi’s sarcoma was known as an old man’s skin disease, typically affecting Jews and Italians. The pathologist decided that Robert R. had an African variant that affected children and primarily targeted the lymphatic system. That decision suggested an intriguing question: How did a black 15-year-old from St. Louis acquire Kaposi’s sarcoma?

Doctor Donor Fertility Fraud (Kudrat Wadhwa, The Verge, June 2022)

A woman seeking her familial DNA for a clinical trial learns that not only is her father not her biological father, but her bio dad is actually her mother’s fertility doctor. All together, now: Yikes. Worse, she finds out that she is not alone; several other children conceived via fertility clinics have also discovered that their fertility doctors are their real fathers. One doctor, featured in the Netflix documentary Our Father, sired over 90 children. 

This piece grapples with ethical questions and hard-to-draw lines: Is it medical rape to inseminate someone with fraudulent sperm? Do these doctor-fathers owe their scores of children anything? Should these children, once the fathers are discovered, seek a relationship with their bio dads? And what if the bio dad wants nothing to do with them? What if these men fail to see their behavior as a violation? 

Not a mystery, but still riveting — and a good case study around the meaning of consent. 

Not everyone who is watching Our Father has a personal connection at stake, but they are drawn in regardless. Fertility fraud rivets audiences because it channels the mysterious allure of genetic inheritance, crossing it with the perverse power relations between a doctor and their patient. Conception — so often an intimate act — is made impersonal and medicalized in the context of the fertility clinic, and then made intimate again through the abuse of the doctor-patient relationship. 

Every child of fertility fraud is a baby who was desperately and deeply wanted by their parents. The exploitation of that desire is devastating; the fact that the body becomes evidence of the transgression is all the worse.

Sick To Our Stomachs: Why Does Everyone Have IBS? (Natasha Boyd, The Drift, June 2022)

If Rule 34 of the internet is that there exists porn for every possible interest, then Rule 35, according to Jo Piazza of the podcast Under the Influence, is that there exists an influencer for every topic — including diarrhea. 

Why yes, Hot Girls do have IBS, and you can hear all about it on TikTok, Instagram, and pretty much anywhere else there is to make money off of “bloating positivity.” (Truly, if there was ever a sign that we really are in late-stage capitalism, this has to be it.) But really, why do so many hot girls (and other mortals) have IBS these days? This essay takes a look at the history of digestive discomforts, all the way back to the 1700s when The Gentleman’s Magazine examined why all the “well-to-do Ladies” complain of stomach “[d]iagnosticks … neither visible or certain” and to our new era of “normalizing bowel function” (finally!).

It has a name, but not much else. IBS is a so-called “functional disorder,” meaning that it is a condition without identifiable cause. Unlike with inflammatory bowel diseases such as Crohn’s or ulcerative colitis, patients diagnosed with IBS have no medically detectable signs of damage or disease in their digestive tracts. Essentially, IBS is diagnosed when tests come back normal; it’s what’s written down on a chart when there’s nothing else left to identify. Many people with IBS struggle with the implication that their symptoms are made up — especially as IBS both relies on self-reporting and presents differently from patient to patient. It is a catch-all term for a variety of gastrointestinal ailments, including cramping, bloating, intestinal gas, diarrhea, and constipation. Statistically, it affects more women than men, and is most common in people under 50. Regular exercise, cognitive behavioral therapy, yoga, and meditation have all been shown to alleviate symptoms. Even so, “IBS is not a psychiatric illness,” says Dr. Arun Swaminath, director of the inflammatory bowel disease program at Lenox Hill Hospital in New York City, “though stress and depression can make symptoms worse.” Despite its growing prevalence — IBS is the most frequently diagnosed gastrointestinal disorder — some doctors and digestive specialists question its utility as a medical construct, since the diagnosis does not elucidate anything about patients’ physiology or the causes of their discomfort. It is, however, very profitable: in the United States, the annual medical costs associated with IBS exceed $1 billion.


Lisa Bubert is a writer and librarian based in Nashville, Tennessee. Her work has appeared in The Rumpus, Texas Highways, Washington Square Review, and more.

Editor: Peter Rubin

Copy Editor: Krista Stevens

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Was This Professor Fired for Having Tourette Syndrome? https://longreads.com/2022/11/15/was-this-professor-fired-for-having-tourette-syndrome/ Tue, 15 Nov 2022 23:13:31 +0000 https://longreads.com/?p=181216 Barry Yeoman considers what happens when two progressive imperatives — protecting the rights of people with disabilities, and ensuring that no one experiences harassment in schools or workplaces — appear to be at odds. If you’re looking for tidy narratives or easy answers, this isn’t the story for you. For moral complexity, read on:

Conflicts also arise for students with autism, who are entering higher education in greater numbers than ever, in part because of better K-12 support services. Autistic students sometimes have difficulty reading social cues and thus engage in behaviors that, to their neurotypical classmates, resemble stalking. In college, the support services that earlier might have intervened are gone.

“You take a kid who’s had a life jacket on, and that’s how they’ve been swimming for years, and then you put them into a different pool, take off the life jacket, and say ‘Good luck,’” said Lee Burdette Williams, the executive director of the nonprofit College Autism Network. “And they just plunge to the floor of the pool. And one of the ways that happens is around their social interactions.”

The object of an autistic student’s attention might file a stalking complaint under Title IX, the federal education law barring sex discrimination. “And then you have [campus officials] swooping in to say, ‘That’s not allowed here, and now I’m going to have to sanction you,’” Burdette said. “And here’s the kid, furiously trying to stay above water.”

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The Last Children of Down Syndrome https://longreads.com/2020/11/19/the-last-children-of-down-syndrome/ Thu, 19 Nov 2020 05:27:32 +0000 http://longreads.com/?post_type=lr_pick&p=145138 In 2019, only 18 babies in Denmark were born with Down syndrome. Prenatal testing is changing who gets born and who doesn’t.

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Who Gets a Vaccine? https://longreads.com/2020/09/28/who-gets-a-vaccine/ Mon, 28 Sep 2020 14:00:43 +0000 http://longreads.com/?p=144054 We may not have a COVID-19 vaccine, but who will even get it when we do? ]]>

2020 is the year that brought us COVID-19 — but as Danielle Groen explains in The Walrus, the battle against viruses is not a new one. In the 1600s Chinese doctors were attempting to vaccinate against smallpox by grinding a “scab into a powder” and blowing it up the patient’s nose, and the basic principle has not changed to this day — teaching the immune system how to fight a virus if it is infected. The difference with COVID-19 is the need to vaccinate the whole world, fast. Developing the vaccine is still the first hurdle, but what comes next is going to be just as complicated, with every country in competition for supplies. 

Making a successful vaccine is one challenge. Making enough of it to satisfy world demand is another. There are, of course, all sorts of regulations and standards concerning how to go about production: “I can’t head into my basement and start brewing up a vaccine,” says Curtis Cooper, president of the Canadian Foundation for Infectious Diseases. Every facility needs to conform to Good Manufacturing Practices (gmp), which are exceptionally specific rules set out by the WHO that ensure quality control. You want consistency over time so that each successive batch is precisely the same.

… the UK reserved 100 million doses of the University of Oxford’s vaccine while the US secured another 300 million—that’s nearly a quarter of Oxford’s projected annual supply gone. By mid-August, preorders of COVID-19 vaccine candidates were reportedly stretching toward 6 billion doses, almost all of them claimed by wealthy nations. None of these vaccines has yet been proven to work.

This raises the question of whether it will be the wealthy countries that dominate the vaccine supply, and other ethical questions also lurk beneath the surface. 

Do you vaccinate to prevent mortality? In that case, for this virus, the elderly need to be prioritized. Do you vaccinate to reduce transmission and spread? There are some house-partying twentysomethings in Kelowna who could get the jab. Or do you vaccinate widely in an attempt to achieve herd immunity? NACI advises that front line workers be prioritized because they’re at a greater risk of infection based on the work they do. But that’s not axiomatic: “There’s no commandment in the bible of pandemic response that health care workers go first,” Upshur says. “You have to make arguments, and those arguments are based partly on data and partly on ethics.” We know that racialized and low-income people are infected at rates wildly disproportionate to their populations, not for any epidemiological reason but because of historical and economic disadvantages. This inequality persists for those working in the health care system itself: The Lancet published a study of almost 100,000 front line health care workers in the UK and US, which found that racialized workers were nearly twice as likely as their white colleagues to come down with COVID-19. Should decision making about vaccine prioritization be based on structural social causes instead?

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How the US Spied on Allies and Adversaries Alike https://longreads.com/2020/02/11/how-the-us-spied-on-allies-and-adversaries-alike/ Tue, 11 Feb 2020 20:15:26 +0000 http://longreads.com/?p=136932 The "United States and its allies exploited other nations’ gullibility for years, taking their money and stealing their secrets."]]>

The CIA, in a secret partnership with West Germany, used Crypto AG to sell encryption services to gullible governments and then promptly read all their clandestine communications. As Greg Miller reports at The Washington Post, the CIA fed important information to their allies around the world and ignored assassination plots, ethnic cleansing campaigns, and other human rights abuses and atrocities, all in a bid to protect their covert communication channels from being exposed.

For more than half a century, governments all over the world trusted a single company to keep the communications of their spies, soldiers and diplomats secret.

The company, Crypto AG, got its first break with a contract to build code-making machines for U.S. troops during World War II. Flush with cash, it became a dominant maker of encryption devices for decades, navigating waves of technology from mechanical gears to electronic circuits and, finally, silicon chips and software.

The Swiss firm made millions of dollars selling equipment to more than 120 countries well into the 21st century. Its clients included Iran, military juntas in Latin America, nuclear rivals India and Pakistan, and even the Vatican.

But what none of its customers ever knew was that Crypto AG was secretly owned by the CIA in a highly classified partnership with West German intelligence. These spy agencies rigged the company’s devices so they could easily break the codes that countries used to send encrypted messages.

From 1970 on, the CIA and its code-breaking sibling, the National Security Agency, controlled nearly every aspect of Crypto’s operations — presiding with their German partners over hiring decisions, designing its technology, sabotaging its algorithms and directing its sales targets.

Then, the U.S. and West German spies sat back and listened.

They monitored Iran’s mullahs during the 1979 hostage crisis, fed intelligence about Argentina’s military to Britain during the Falklands War, tracked the assassination campaigns of South American dictators and caught Libyan officials congratulating themselves on the 1986 bombing of a Berlin disco.

For years, BND officials had recoiled at their American counterpart’s refusal to distinguish adversaries from allies. The two partners often fought over which countries deserved to receive the secure versions of Crypto’s products, with U.S. officials frequently insisting that the rigged equipment be sent to almost anyone — ally or not — who could be deceived into buying it.

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The Fertility Doctor’s Secret Children https://longreads.com/2019/03/18/the-fertility-doctors-secret-children/ Mon, 18 Mar 2019 18:00:49 +0000 http://longreads.com/?p=122198 Donald Cline justified his deception with choice bible verses, so that makes everything okay.]]>

As a fertility doctor in Indiana in the ’80s, Donald Cline helped bring many children into the world, though no one knew he was donating his own sperm to the cause. While this is clearly immoral, as Sarah Zhang reports at The Atlantic, Cline was only prosecuted for obstruction of justice — for attempting to cover up his crimes — because there is no law in Indiana or in many other states that prohibits a physician from using his own sperm in fertility treatment.

The people now sending her messages said they were Cline’s secret biological children. They said their parents had also been treated by Cline. They said that decades ago, without ever telling his patients, Cline had used his own sperm to impregnate women who came to him for artificial insemination.

According to her DNA, Woock, too, was one of his children.

In the time since Woock’s half siblings got in touch with her, they have broken the news dozens more times. The children Cline fathered with his patients now number at least 48, confirmed by DNA tests from 23andMe or Ancestry.com. (Several have a twin or other siblings who likely share the same biological father but haven’t been tested.) They keep in touch through a Facebook group. New siblings pop up in waves, timed perversely after holidays like Christmas or Mother’s Day or Father’s Day, when DNA tests are given as well-intentioned gifts.

Like Woock, many of her new siblings learned that they were donor-conceived from a DNA test. (Woock’s parents eventually told her they’d gone to Cline for donor insemination, but they’d had no idea he was the donor.) And in their shock, many also thought the initial messages explaining the situation were part of a scam. But eventually they found news clips laying out that, yes, this doctor deceived his patients, and yes, he used his own sperm, and yes, this is really happening.

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The latest Instagram influencer frontier? Medical promotions. https://longreads.com/2019/02/18/the-latest-instagram-influencer-frontier-medical-promotions/ Mon, 18 Feb 2019 18:57:39 +0000 http://longreads.com/?post_type=lr_pick&p=120875 Health care and medical sponsored content from influencers is growing on Instagram. But is it ethical?

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Whose Facade Is It, Anyway? https://longreads.com/2019/02/07/whose-facade-is-it-anyway/ Thu, 07 Feb 2019 17:31:32 +0000 http://longreads.com/?post_type=lr_pick&p=120438 These days, whether you like it or not, your photogenic home may be a backdrop for tourists’ photoshoots. But posing in front of pretty facades, a practice perfected by travel influencers on Instagram, brings up issues of privacy and etiquette.

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Dog Cloning: Controversial and Downright Creepy https://longreads.com/2018/08/08/dog-cloning-controversial-and-downright-creepy/ Wed, 08 Aug 2018 14:00:19 +0000 http://longreads.com/?p=112047 A clone is not a clone, it's a twin born at a different time -- one that is only ever about 85 percent the same as the original. ]]>

If you’ve ever loved and lost a pet, chances are you wished you could have them back. If you’ve got $100,00 and you’re ethically okay with the invasiveness and wastefulness of pumping multiple dog surrogates full of hormones to get a replica of your pooch that’s about 85 percent the same, a disgraced South Korean doctor has got a deal for you.

At Vanity Fair, David Ewing Duncan profiles Hwang Woo-suk, a man who once claimed to have cloned a human embryo (false!) and who now copies dogs for profit.

When a dog was first cloned, in 2005—a scientific achievement that Time hailed as one of the breakthrough inventions of the year—it took more than 100 borrowed wombs, and more than 1,000 embryos. “Surrogate mothers are a little bit like The Handmaid’s Tale,” says Jessica Pierce, an ethicist and dog expert who teaches at the Center for Bioethics and Humanities at the University of Colorado. “It’s a canine version of reproductive machines.”

Yet here in the operating room at Sooam, everyone is all smiles—especially the veterinarian representing the customer who paid for Clone 1108. A slender man whose employer is Middle Eastern royalty, he stands in scrubs next to Dr. Hwang, posing for photos with the newborn pup. It’s a moment that has become almost as routine as it is lucrative for Sooam: over the past decade, the company has cloned more than 1,000 dogs, at up to $100,000 per birth. “Yes, cloning has become a business,” says Wang. If a dog owner provides DNA from a deceased pet quickly enough—usually within five days of its death—Sooam promises a speedy replacement. “If the cells from the dead dog are not compromised,” Wang explains, “we guarantee you will get a dog within five months.”

The process itself, fine-tuned over years of trial and error, is known as “somatic cell nuclear transfer.” It starts with an egg from a donor dog. Using a high-powered microscope, scientists poke a micro-hole in the egg and remove the nucleus, where the DNA is housed. They then replace the nucleus with a cell from the dog that is being cloned—usually from its skin or inside its cheek. Finally, the hybrid egg is blasted with a short burst of electricity to fuse the cells and begin cell division. The embryo is then imbedded in a surrogate’s womb. If the transfer takes, a puppy will be born some 60 days later.

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