❌

Reading view

So you've been offered a buyout. HR experts share top tips and questions to ask before deciding whether to take it.

Pedestrians walk past a Microsoft storefront with illuminated signage and logo at dusk.
About 60,000 Microsoft employees are eligible to consider a buyout. HR experts say the payout is only one part of the decision.

Craig T Fruchtman/Getty Images

  • With Microsoft offering about 60,000 staff buyouts, many will be deciding whether to take one.
  • Business Insider asked HR experts what advice they'd give workers offered buyouts.
  • Their advice included budgeting for a longer job search and pricing out replacement health coverage.

About 60,000 Microsoft employees have a choice to make: take a buyout and leave at the end of the year, or stay.

Eligible employees have until early December to decide. Offers reviewed by Business Insider vary by level, location, and length of service.

For US employees at levels 64 and below, the cash offer is one week of base pay for every six months of service; at levels 65 to 67, it is two weeks for every six months. The offers also include continued stock vesting and health insurance.

Buyouts are a reasonably common offering for corporations looking to cut costs, but deciding whether to take one can be difficult. Business Insider spoke to two HR experts to ask which factors employees should weigh and which questions they should ask before signing.

Read their top tips below:

Work out what the offer is really worth

"The number is important," Marjo Miles, founder and principal consultant at The Ember Effect, told Business Insider. "But really, there’s more than that number."

Employees should check what happens to their stock, paid time off, health coverage, and any bonus or commission due after they leave, Miles said. They should calculate how long the payout would cover household expenses after tax and deductions.

Deborah Saneman, CEO of workforce management and HR technology company Würk, told Business Insider that employees should price out replacement health insurance: how long coverage lasts, what they would pay monthly, and whether the company covers any of the premium.

She also recommended checking which shares would vest after their exit. "The headline number is only part of the picture, so get the details in writing," she said.

Plan for a longer job search

"Whatever somebody thinks their job search is going to take, double it in your mind and plan for that," Miles said.

She suggested using the time before the deadline to explore options. "Instead of deciding today, maybe start your job search today, she said.

Contacting people in their network and applying for roles could give employees a clearer sense of their prospects before they commit to leaving.

Saneman said employees should ask about career coaching, outplacement, or training. "A payout covers your bills, but help with the search itself can shorten the runway," she said.

Consider what staying could look like

Turning down a buyout does not guarantee job security, Miles said, though she cautioned against assuming layoffs will follow. Companies could leave vacant roles unfilled or take other steps to meet a savings goal.

"There are a lot of different ways that organizations can strategically get to their goal without just immediately doing a reduction," she said.

Saneman also cautioned against predicting what Microsoft or any other company might do next. "The benefit of a buyout is that it's on your own terms and gives you time to plan your next steps," she said. "A layoff may not."

Miles suggested asking how departing colleagues' work would be redistributed and what support would be available.

Saneman said employees should consider their longer-term plans: "The right choice is the one that fits where you want your career and your life to go, not just the one that looks best on paper."

Questions to ask before taking a buyout

Business Insider asked Saneman and Miles to share what questions they'd advise employees considering buyouts to ask. Read their four key questions below:

Would I be eligible for rehiring?

"Microsoft is a large organization, and professional paths may cross again in the future," Miles said. That may not make or break the decision, but it is worth knowing.

Will the payout be a lump sum or continued salary?

This can affect when the money arrives and how health insurance and other benefits are handled.

What happens to my bonus or commission?

Employees should check whether they will receive any payment due after their exit date and have the answer documented by HR.

What help will I get finding another job?

Saneman suggested asking about career coaching, interview preparation, and training to build new skills.

Read the original article on Business Insider

  •  

Africa’s ‘unprecedented’ Ebola outbreak could reach UK, says top health official

Jean Kaseya, of the Africa CDC, warns of the illness spreading like Covid unless more funding is secured to increase preparedness and possible treatment

The “unprecedented” spread of the Ebola outbreak means it could reach the UK and other countries, according to one of Africa’s top health officials.

As the current outbreak reached 10,000 cases, with almost 5,000 deaths, Dr Jean Kaseya, director general of the Africa Centres for Disease Control and Prevention (CDC), compared the outbreak to the Covid pandemic, which first took hold in China before spreading to countries across the world, claiming millions of lives, and ravaging health systems and economies.

Continue reading...

© Photograph: Sodiq Adelakun/Reuters

© Photograph: Sodiq Adelakun/Reuters

© Photograph: Sodiq Adelakun/Reuters

  •  

‘Ferritin face’: are social media claims about iron deficiency fact – or fiction?

Experts say symptoms such as dark circles under the eyes, grey skin, cracked lips and hair loss can be a warning sign – but there are other factors too

TikTok is rife with influencers warning of “ferritin face”, a term they use to describe the pallor, dark circles, dry skin, and hair loss claimed to indicate low iron stores. But is this based on fact or fiction, and when is it time to head to the GP?

Continue reading...

© Photograph: Alamy/PA

© Photograph: Alamy/PA

© Photograph: Alamy/PA

  •  

School principal documents Indonesia's worst wildfires in a decade

Indonesia is battling its worst wildfires in more than a decade, made worse by El Niño. Many were deliberately set to clear land for farming, including palm oil plantations. More than 12,000 schools across Indonesia have closed because of the toxic haze. Natanael Undas, a school principal and photographer, has been documenting the fires on social media.

  •  

How Worried Should We Be About the Economy? Let’s Look at 2008.

It’s not impossible to spot the characteristics of a brewing financial crisis. We can look to 2008 for clues.

© Illustration by Andrei Cojocaru; photos by Getty Images

  •  

Christina Applegate's experience highlights challenges of diagnosing MS

When actor Christina Applegate revealed that she had been misdiagnosed with multiple sclerosis, it triggered not only an outpouring of empathy for her, but raised important questions about how often people are told they have the condition when they don't. William Brangham discussed why MS can be so difficult to diagnose with Dr. Michael Kornberg of Johns Hopkins University.

  •  

John Oliver Warned Against Cherry-Picked Studies. Then He Cherry-Picked His Own.

John Oliver, host of HBO's 'Last Week Tonight' and a scientific studies graphic next to him | Adani Samat

In 2016, the HBO comedian and political commentator John Oliver produced a terrific segment on how TV pundits routinely cite garbage science. After showing clips of newscasters and commentators making absurd claims such as, "A new study showing that drinking a glass of red wine is just as good as spending an hour at the gym," and The Today Show's Al Roker commenting, "You find the study that sounds best to you, and you go with it," Oliver commented, "No! No, no, no, no, no, no, no! You don't just get to cherry-pick the parts that justify what you were going to do anyway."

Then Oliver added a useful rule: "If they are going to keep saying 'a study says,' they should have to provide sourcing and context or not mention it at all." (Though the segment specifically targeted the misuse of "scientific" studies, all the same principles apply to the social sciences.)

What's so noteworthy about that 2016 segment is that in his other monologues, on issues ranging from SWAT teams to homelessness, Oliver has routinely ignored the principles he laid out. In his overly simplistic takes on complex policy issues (often designed to dunk on his ideological opponents for comedic effect), he often fails to provide appropriate context and appears to be guilty of choosing research "that sounds best," as Roker put it, or at least that supports whatever point he's determined to make.

Oliver is one of America's most influential pundits, so he should be held to the highest of journalistic standards. And Last Week Tonight is indeed more diligent than many TV news programs. The show employs researchers who interview the authors of the studies it cites. Oliver is a comic, not an academic, so we can excuse him for not posting footnotes, and he routinely cites his sources on screen. When we emailed the show's producers to point out problems with their research, to their credit, they sent back a detailed response that we'll quote from in this article. (In a few cases, they pointed to Reason articles using some of the same studies, albeit with full citations and more context. In cases in which their criticisms were correct, we've annotated the original articles.)

Many of the show's researchers are former reporters and editors who abide by journalistic standards. Nevertheless, the show has a long track record of citing social science findings without the appropriate context, massaging them to support whatever point Oliver is trying to make.

 

Rent

In his excellent 2016 segment on scientific studies, Oliver noted: "There is a lot of bullshit currently masquerading as science. Not all scientific studies are equal. Some may appear in less-than-legitimate scientific journals, and others may be subtly biased because of scientists feeling pressured to come up with eye-catching positive results."

Cut to a 2022 segment titled "Rent," and we find Oliver citing a study that his wiser self would have characterized as "bullshit."

"Right now, there is not a single county in the U.S. where a worker earning minimum wage can afford a modest two-bedroom rental home," he said. He was citing a study designed to produce an "eye-catching" result. It was published not by a reputable journal, but by the National Low Income Housing Coalition, an advocacy group that lobbies for government spending on housing and rent subsidies, including expanding the National Housing Trust Fund and increasing federal appropriations to the Department of Housing and Urban Development.

The biases are not particularly subtle. Why would a minimum-wage worker need a two-bedroom home? In the study, "can afford" doesn't mean "have enough money to buy the cheapest available," as most English speakers would interpret it. The authors use it to mean renting a two-bedroom home at the 40th percentile price point of the local market (that is, a little cheaper than the median unit), using no more than 30 percent of their income, excluding government benefits, pensions, or other nonearned support.

Oliver also didn't mention who these minimum-wage workers are. In 2025, according to the Current Population Survey, a third of hourly workers paid the federal minimum or less lived in a parent's or grandparent's home, a fifth were married and living with a spouse, and only one in eight lived alone.

When we asked the show's producers why they failed to disclose that their source was an advocacy group seeking government funds, they pointed to the onscreen credit and responded: "We trust our viewers' intelligence enough to think they might be able to read it and conclude that the National Low Income Housing Coalition is interested in building low-income housing, nationwide, possibly even as part of a coalition."

I don't share their confidence that most viewers can read the onscreen source line and tell from the organization's name whether it's an advocacy group. There's a double standard here: When Oliver doesn't like what a study says, he's not content to just trust his viewers; he makes it explicit, as he did with the "ethanol lobbying groups" mentioned above.

Oliver's producers wrote us: "When we rely on studies from advocacy groups, we look at the underlying data and speak to researchers to better understand it; we discard many studies as a result."

This one belonged in the trash.

 

Sports Betting

In a 2025 segment, Oliver cited an eye-catching statistic about how sports betting was driving a spike in bankruptcies. "Unsurprisingly, the rise of online sports betting has been found to correlate with a rise in gambling harms, with one study showing that in states that allowed it, there was a 28 percent increase in bankruptcies, translating to about 100,000 extra bankruptcies a year."

I'll give Oliver credit for saying "correlate with" rather than "cause," but the rest of that sentence ("in states that allowed it, there was a 28 percent increase") implies direct causality.

The bigger problem is that the "100,000" figure is clearly wrong. When I contacted the study's authors, they told me they don't know where that figure came from, and it doesn't appear anywhere in the study. Last Week Tonight's producers told us they pulled it from a Business Insider article, but in the video, Oliver said it came from the study.

If Oliver's researchers had done the same calculation as the authors, multiplying the per-person effect by the at-risk population, they'd have found about 30,000 extra bankruptcies a year, not 100,000, and a 6 percent to 7.5 percent increase, not 28 percent.

Oliver also left out important context: He was citing an unpublished working paper. The peer-reviewed version appeared after the Last Week Tonight segment aired, and it included substantive changes. Working papers from credible researchers, like this one, are valuable, but Oliver should have made it clear he was citing a preliminary draft circulated to other researchers for comment, not a published study.

 

Homelessness

In 2021, Oliver did a segment making a case for a policy called "Housing First," which includes placing more homeless people in permanent supportive housing. The problem is that building and maintaining these units is expensive, so permanent supportive housing doesn't scale easily. Oliver set out to dismiss that objection by citing research showing the alternative is even more costly.

"One study in Florida," Oliver said, "found that, just between money spent on incarceration and emergency medical treatment, their communities and local governments had spent an average of just over $31,000 per person per year, when the estimated cost of providing them with permanent supportive housing would have only been around $10,000 per year."

The Florida study's finding was an outlier. The Central Florida Commission on Homelessness commissioned it, and Housing First advocates promoted it because it produced the headline they wanted. I give Oliver credit for noting that the study "tracked a decade's worth of spending on just 107 chronically homeless people," but he left out additional context.

In 2018, a committee convened by the National Academies of Sciences, Engineering, and Medicine evaluated permanent supportive housing. It concluded that there is "no substantial evidence that [it] contributes to improved health outcomes" and "insufficient evidence" that it's cost-effective.

Studies exist on both sides of this issue, and we can debate whether permanent supportive housing is more cost-effective than the alternative, but Oliver cited one study and implied it was conclusive.

Oliver also neglected to mention that the paper was written by a consulting firm led by a supportive-housing advocate, though if you looked closely, you could see the organization's name on the screen as he delivered his monologue.

 

Ethanol

Oliver and I agree that the federal government shouldn't be subsidizing ethanol. But in a 2024 segment titled "Corn," Oliver pointed to a study claiming that ethanol is more harmful to the environment than gasoline and implied that only self-interested lobbyists say otherwise.

"While ethanol lobbying groups have long argued that it slashes greenhouse emissions," he said, "one recent study found that corn ethanol produced under the renewable fuel standard has a carbon footprint at least 24 percent higher than regular gasoline."

What Oliver doesn't mention is that the 2022 study he cited was highly contested. It was challenged not only by "ethanol lobbying groups" but also by the U.S. Department of Agriculture under the Biden administration. The study's claim that ethanol has a higher carbon footprint than gasoline also contradicts a 2010 Environmental Protection Agency projection that ethanol would be about 20 percent cleaner than gasoline. Argonne National Laboratory, running the government's standard model, credits ethanol with cutting greenhouse emissions by more than 500 million tons in 15 years.

The problem isn't that Oliver is wrong; it's how he presented this study. Whether ethanol mandates are good or bad for the environment is a complicated, contested issue, with strong studies on both sides (and plenty of weak ones). Plucking one from the pile and reporting its findings is misleading.

Ethanol subsidies are bad because they involve politicians using mandates to buy farmers' votes, and top-down mandates generally lead to less optimal decision-making. But it's not clear that ethanol increases carbon emissions.

 

SWAT Raids

In a 2014 segment on police militarization after the fatal shooting of Michael Brown in Ferguson, Missouri, Oliver said, "There has been a massive rise in both the number and the use of police department SWAT teams," and showed a news clip that stated: "The number of SWAT raids has gone up by 1,400 percent since the 1980s. An estimated 50,000 now take place every year." Instead of mocking the clip, as he often does, Oliver cited it approvingly.

So where did the claim of a 1,400 percent increase come from? It's based on a voluntary mail-in survey, which isn't a reliable way to gather data. No official count of SWAT raids exists, and almost nobody tracks them, then or now, so the figure rests on departments' self-reporting of how often they "deployed," with no shared definition of what that means.

The 1980s figures that form the baseline for the 1,400 percent increase in SWAT raids come from a mid-1990s survey, making them especially unreliable. No one was counting SWAT raids at the time, and there's no way to verify them.

Oliver followed that clip by citing another study: "Just keep that clip in mind," he said, "when I tell you that 79 percent of SWAT deployments are now for executing search warrants, and most of those were for drug investigations."

Again, there's missing context. That 79 percent figure comes from a small, nonrandom sample generated by an American Civil Liberties Union records request; the organization could get data from just 20 of America's roughly 18,000 police agencies.

When we pointed out to Oliver's producers that the data on SWAT teams were stripped of their context, they replied that since this segment aired, "We've become more diligent about critically interrogating the sourcing on studies in our shows." They also argued that more "recent studies," if anything, suggest that the studies they cited "understated the true scope of things." And they pointed to instances of Reason citing the same data.

I agree with Oliver's position on SWAT raids, but he really should be agitating for better data. We're permitting state violence without anyone keeping the detailed records that could help us understand the costs and benefits. But that doesn't excuse citing two studies based on weak data and presenting them as fact.

 

Tipping

In a 2025 segment on tipping, Oliver said, "Recent analyses have found that poverty rates for tipped workers are over twice as high as for nontipped workers."

Twice as high as for which nontipped workers? The analysis he's citing included all nontipped workers in the U.S., including CEOs and neurosurgeons. Oliver, who reportedly makes $30 million a year, also pulled up the nontipped average. The right way to evaluate tipping is to match tipped and untipped workers by job: Waiters have about the same poverty rate as fast-food workers, and hotel maids about the same as other cleaners. If you control for job, age, and hours, the gap closes.

It's another study designed to generate a talking point, which isn't surprising since it was published by the Economic Policy Institute, a progressive, left-of-center think tank. The organization's name appeared onscreen as Oliver delivered his monologue, but, once again, viewers would need to hit pause to look it up and figure out what the Economic Policy Institute stands for.

Oliver's 2016 segment on "scientific studies" shows that he should know better. It's possible to construct arguments by citing good research responsibly, while providing the proper context and sourcing. It's possible to follow research where it leads, instead of retrofitting it to preconceived ideas. You just have to be willing to present data that capture reality in all its messiness, even if that means it won't generate an easy laugh line.

To keep up with our video series Wrong Number featuring Aaron Brown, and to receive bonus content and more, click here to enter your email address.

The post John Oliver Warned Against Cherry-Picked Studies. Then He Cherry-Picked His Own. appeared first on Reason Magazine.

  •  

CCMAR recebe selo HR Excellence in Research

O Centro de Ciências do Mar (CCMAR) associa-se, assim, a um grupo reduzido de instituições que detêm este selo no nosso país. O reconhecimento é atribuído pela Comissão Europeia e destaca o compromisso do CCMAR na progressão da implementação dos princípios da Carta Europeia dos Investigadores, promovendo uma melhoria contínua das políticas e práticas de […]

  •  

Brussels Presses Google Over Compliance With €890 Million Digital Markets Act Penalties

The European Commission is assessing changes to Google’s search engine and app-store practices after imposing two substantial fines in July. Regulators must now decide whether the company’s response satisfies EU competition requirements or leaves it exposed to further enforcement.

The European Commission is continuing discussions with Google over the company’s response to €890 million in penalties imposed under the Digital Markets Act, as Brussels examines whether changes to its search engine and app-store practices are sufficient to address infringements of European competition rules.

Commission spokesman Thomas Regnier confirmed on Wednesday, 14 October, that officials remained in dialogue with the American technology company. The Commission is assessing the measures Google has introduced, taking account of feedback from businesses affected by its services before reaching a conclusion on compliance.

The review follows two decisions adopted on 23 July, when the European Commission found Google in breach of the Digital Markets Act. A €460 million fine concerned preferential treatment for Google’s own services in search results, while a separate €430 million penalty addressed restrictions preventing app developers from freely directing customers towards alternative purchasing channels.

Search rankings remain under examination

The first infringement concerns Google’s treatment of competing online services offering hotel reservations, shopping comparisons, transport information and sports results.

Regulators concluded that Google had placed its own services in more prominent positions, sometimes providing them with enhanced visual features and search functions unavailable to competing businesses.

The Digital Markets Act prohibits designated gatekeepers from giving their own products preferential treatment when ranking services that compete with those offered by other companies.

Google has already modified its European search results in response to the Commission’s decision. The changes include revised presentations of commercial information and greater prominence for independent comparison services.

As EU Today reported following the introduction of the revised search format, Google has argued that the measures could make searches less convenient and increase dependence on intermediary websites.

The company maintains that direct information previously available through its search engine may become harder for consumers to obtain.

For competitors, however, the question is whether Google’s adjustments provide genuine commercial opportunities or merely alter the appearance of search results without changing the underlying distribution of traffic.

Google Play fees face scrutiny

The second case concerns the Google Play application marketplace, where developers have historically depended on Google’s infrastructure to distribute software and sell subscriptions.

Under the DMA, developers must be able to inform customers about alternative offers and direct them towards purchasing arrangements outside the platform, including their own websites.

The Commission found that Google’s restrictions and fees had limited that freedom.

Although the company may charge for certain services associated with acquiring customers, the Commission concluded that the level and duration of its steering-related charges exceeded what the legislation permits.

Google has since adjusted its external-offers arrangements. European officials are examining whether those changes provide developers with a commercially workable alternative to transactions processed through Google Play.

The issue has consequences for subscription services, digital publishers and software companies seeking to maintain direct relationships with their customers.

A formal ability to direct consumers elsewhere is of limited benefit if the financial conditions make such transactions uneconomic.

Enforcement enters a more demanding phase

The Digital Markets Act was designed to address market practices that conventional competition investigations often took years to resolve.

Rather than requiring regulators to establish a new infringement through lengthy proceedings in every instance, the legislation imposes specific obligations on companies designated as gatekeepers.

The Commission’s DMA enforcement framework allows regulators to examine whether those obligations are being followed and to impose financial penalties when they are breached.

Google’s July fines represented an important enforcement decision. The current review concerns the company’s subsequent conduct and the practical effects of its compliance measures.

The continuation of discussions does not itself establish a fresh infringement. Further penalties would require an additional regulatory determination.

Google also faces broader obligations concerning the sharing of search data with competing providers, an issue addressed in a separate Commission decision issued in July.

These obligations concern access to anonymised information about searches, rankings and user interactions that competing search engines may need to improve their own services.

Taken together, the measures represent a substantial intervention in how Google’s European business operates.

Transatlantic tensions complicate the dispute

The proceedings have acquired a political dimension because most of the largest companies affected by the DMA are American.

President Donald Trump has criticised European penalties against US technology companies and threatened trade measures in response to what his administration regards as discriminatory regulation.

Brussels maintains that the legislation applies according to market position and commercial conduct, regardless of nationality.

European regulators must nevertheless enforce their decisions in an environment where competition policy has become entangled with wider trade relations between the United States and the European Union.

Google’s financial exposure extends beyond the €890 million imposed in July. Continued non-compliance could lead to further regulatory proceedings, while changes to the company’s services may also affect advertising revenue and its relationships with commercial partners.

The immediate assessment will concentrate on whether competing search services receive fair treatment and whether application developers can direct customers towards alternative transactions without unjustified restrictions.

The Commission has not announced a date for its final assessment. Its decision will help establish how far Europe’s digital competition legislation can change the conduct of companies whose platforms occupy central positions in online commerce.

  •  

The Unforeseen Something

family portrait of three outside a home with a brick wall and light-colored front door

Mark Johnson | The Atavist Magazine | September 2026 | 2,048 words (7 minutes)

This is an excerpt from issue no. 180, “The Family Plan.”


At first she told no one. Not her twin sister. Not her mother. Not even her father the scientist.

Six-year-old Jenna Smith knew better than to pee when she was in the bath. But on that night in 1992, in her family’s home in Iowa City, the water felt so comfortable against her skin that she didn’t want to get out of the tub. It seemed like such a small thing. Who would know?

Seconds later the water around her waist turned reddish pink. Blood? It had to be. Jenna wondered if she’d hurt herself. “I was six years old sitting in a bathtub, watching a few seconds of my world stop making sense,” she would recall years later.

The Atavist, our sister publication, publishes one deeply reported, elegantly designed story each month. Support The Atavist by becoming a member.

She kept the blood a secret because she didn’t want to admit that she’d peed in the bath. But when it was still in her urine the next time she used the toilet, she went to her mother. Concerned, her mom called her dad, Richard Smith, and he took Jenna to the emergency room.

Richard was an ear, nose, and throat doctor in the University of Iowa’s school of medicine, a researcher who would become one of the world’s authorities on the genetics of hearing loss. His wife, Lynne Lanning, had worked as both a lawyer and a nurse. They had four young children: twins Jenna and Jessica, who were identical, and two boys, Luke and Rion.

At the ER, doctors ran tests on Jenna, but they couldn’t identify the cause of the blood. In the days that followed the bleeding intensified. At her parents’ urging, Jenna collected samples of her urine in Dixie cups for further testing. The doctors remained stumped, however, and after a while Jenna found the whole thing more annoying than worrisome.

The uncertainty was much harder on her parents. It wasn’t that doctors were misdiagnosing their daughter; they were unable to diagnose her at all. “It was horrible,” Richard said. “Imagine seeing your child and you know something is wrong, and you know the doctors treating her have no clue what to do.” Richard called a pediatric nephrologist he knew in Houston, where the family had lived previously. The nephrologist listed several conditions that could be causing the bleeding and said that, to determine which was to blame, Jenna’s parents should take her to Cincinnati Children’s Hospital Medical Center.

In July 1992, Richard, Lynne, and Jenna drove nearly 500 miles to get answers. Doctors in Cincinnati diagnosed Jenna with dense deposit disease, a condition in which proteins clog and damage the kidneys, leading to renal failure in many patients. There was no cure.

The hospital couldn’t tell the family much else—no one could. The disease was exceedingly rare, afflicting between one and three people in a million. Back home, Richard and Lynne spent hours inside the University of Iowa’s quiet medical library, poring over papers in search of information about their daughter’s illness. They could find no evidence that anyone was actively studying the condition.

Although many Americans—roughly one in ten—suffer from a rare disease, the experience can be lonely. Friends and relatives don’t understand the unique miseries such illnesses impose on daily life. Few doctors are likely to have encountered them before. And because there aren’t many patients, drug companies usually don’t invest in research for treatments.

Richard and Lynne feared that their daughter’s life might be tragically brief. Sometimes the mention of weddings would sink Lynne into melancholy; she couldn’t bring herself to watch the movie Father of the Bride. Richard agonized over what to do. His training compelled him to seek answers, but he wanted to be Jenna’s father, not the scientist charged with curing her. He kept his research focused on hearing loss. At first, anyway.

Stories of scientific discovery almost always celebrate individual researchers, consigning the contributions of loved ones, communities, and colleagues to footnotes. There are exceptions―the teams that built the first atomic bomb and deciphered the human genome, for instance. Science also has its share of famous families. Marie and Pierre Curie, along with their daughter Irène and her husband, Frédéric, won five Nobel Prizes between them for discoveries related to radioactivity. For the most part, however, the history of scientific progress has been mythologized as a succession of brilliant, driven individuals—often men—who chose the lab over the dinner table and competition over collaboration.

Some scientists have embraced the role of maverick. “You have to worry about your own work and ignore what everyone else is doing,” the physicist and Nobel laureate Richard Feynman is said to have told a colleague. The decades-long pursuit of a treatment for Jenna’s disease followed a very different path. There was no single hero, no lone scientist seeking glory. The biomedical quest required the efforts of a family and their neighbors in Iowa City, and the work of scientists around the globe. Together they changed an obscure area of medicine.

Richard and Lynne met in 1977, when both were working at Memorial Hermann-Texas Medical Center in Houston—she as a nurse, he as a medical intern. He noticed a run in her nylons and was smitten by her smile. She liked his down-to-earth manner and intelligence, his humor and kindness. They were working in the hospital’s burn unit when he asked her out.

The couple married in 1981, and except for two years in England, they remained in Houston until 1990. That December they moved to Iowa City, where Richard had a job waiting for him leading the pediatric otolaryngology division and running a research lab at the University of Iowa’s medical school. They had been there only a year when Jenna got sick.

Richard and Lynne learned that their daughter’s disease was caused by a malfunction in her complement system. Believed to have evolved long before other parts of our immune infrastructure, the complement system sends proteins to battle foreign invaders. Unlike antibodies, these proteins are not tailored to fight a specific virus or bacteria, but they kick into gear faster when a threat is detected. In people with Jenna’s condition, the complement system is like a runaway train: Proteins become overstimulated and then accumulate in the glomeruli, tiny filters the kidneys use to clear waste from blood.

Blood in the urine is one symptom of the disease. Others include swelling, high blood pressure, inflammation, and fatigue. When Jenna was in the first grade, her body struggled to make growth hormones. Her production of red blood cells slowed, and she grew increasingly tired. During rehearsals for The Nutcracker ballet around Christmas 1993, she’d finish her part and then lie down backstage, completely spent.

Doctors put her on a heavy dose of the steroid prednisone and on blood-pressure medication. The prednisone caused her body to retain water. She woke up each morning with her eyes swollen shut, then waited in bed until the swelling receded. She couldn’t fit into her clothes or shoes. She wore flip-flops and roomy jumpers Lynne sewed for her.

As twins, Jenna and Jessica had always been close. They played together, made up songs and dance moves, explored the woods near their home, and enjoyed pranking friends and family members. “She made a lot of things feel not so heavy,” Jenna said of her sister. Still, she sometimes thought that Jessica “got off scot-free” by not having dense deposit disease. Neither girl liked feeling different from the other. (Years later, Jessica would be diagnosed with type-1 diabetes; Jenna would not.)

The changes to Jenna’s appearance meant the girls were no longer identical. Once, according to Lynne, when a boy at school said that Jenna couldn’t be a twin anymore because of how she looked, Jessica slugged him. Lynne recalled sitting in the principal’s office, politely listening to a lecture—this is not the way we resolve things!—but understanding why Jessica had lashed out. Nothing was so frightening to her daughters as the idea that they’d stop being twins.

About half of those afflicted with Jenna’s disease progressed to kidney failure within a decade of diagnosis; it took her less than a year. She made it through the last day of first grade. Then, as other children departed for summer camp, she went to a clinic. While her classmates practiced archery and did arts and crafts, she learned about the catheter doctors would surgically insert in her body. Through that tube, a machine would pump fluid into her abdomen, where her peritoneum—her abdominal lining—would take over the filtering function kidneys usually perform.

She would take the peritoneal dialysis machine home with her and use it every day for the foreseeable future, possibly for the rest of her life. When a nurse tried to take Lynne aside to show her how to operate it, Jenna stopped her. “I’m the patient,” the seven-year-old insisted. “I’m learning how to run the machine.”

In such moments, Lynne was surprised at the strength she drew from her daughter. She needed it. Her grief could leave her feeling drained. One day she found herself crying into the soil as she gardened.

But Lynne and Richard were determined that sadness would not define their lives. For a long time, they didn’t have a TV in their house—they wanted the family to talk when they were together, and for the children to build forts, learn to sew, be creative. They had painting nights, creating portraits of one another. There were cooking contests, too. Richard and Lynne made sure to spend one-on-one time with each kid. Richard traveled with Luke to Japan, with Rion to the Grand Canyon, with Jessica to Italy, and with Jenna to England. Lynne took trips with the children to Brazil, England, and Guatemala. There were themed birthday celebrations: a James Bond party for Richard, where everyone was armed with Nerf guns, and one for Lynne where Richard dressed as the artist Bob Ross and the guests painted “happy little clouds.” Richard coached the kids’ hockey and soccer teams. He built harps and lyres from scratch, and Lynne played them.

Every day, Richard left for work at 5 a.m., while the children were still in bed. He returned around six at night. The family joked that they could hear him coming from half a mile away in his rust-bucket Isuzu Trooper with the bad muffler and a hole in the passenger footwell. When he wasn’t seeing patients or in surgery, Richard was in the lab. On Saturdays, Luke would go there with him. Sometimes the other kids joined. They liked to refill the communal candy jars and visit the mice used in experiments.

It seemed a wonder to the lab’s staff that Richard squeezed so much into a day. When they began using email to communicate, they received messages from him time-stamped three or four in the morning. “Why don’t you sleep sometime?” a colleague replied once. Indeed, Richard slept little. At night his mind kept running through the mysteries of his daughter’s disease.

Richard had read that it took 10,000 hours—the equivalent of working full-time for about five years—to achieve expertise in a subject. He believed it. In 1995, he began flying to conferences about kidney disease, where he talked to the few doctors who cared for patients like Jenna. Medicine was getting no closer to finding a treatment.

That year the owner of a ranch where Richard and Lynne’s children took riding lessons offered to host a fundraiser for kidney disease research. The family organized Dressage in the Heartland, which featured riding events, fiddle music, and bowls of chili. After raising upwards of $10,000 for the National Kidney Foundation, they held the event again the following year. There are hundreds of kidney ailments, however, and the foundation didn’t allow the money the family raised to be earmarked for the research of dense deposit disease. (The foundation said it now allows monetary gifts to be dedicated to specific conditions.)

Richard and Lynne ran into more disappointment during a visit to the University of Minnesota in early 1997. A specialist they consulted was blunt. “Nobody is looking at this disease,” he told them. “And barring something unforeseen, nothing will be done in the next twenty years.”

It was a four-and-a-half-hour drive back to Iowa City. In the car, Lynne brought up what the doctor had said. Maybe they would have to be that unforeseen something.

  •  
❌