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How a SIDS Study Became a Media Train Wreck – The Atlantic

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Sudden infant death syndrome, or SIDS, “will be a thing of the past,” according to Carmel Harrington, a sleep researcher at the Children’s Hospital at Westmead, in Australia. A press release describes her new study, out this month, as a “game-changing” effort and a “world-first breakthrough” that could prevent future deaths from the tragic illness. Celebrations quickly spread on social media: “THEY FOUND THE CAUSE OF SIDS. Excuse me while I cry for all the parents,” one viral tweet declared. “Closest thing to a miracle in a long time,” said another. The press soon picked up the story. On Friday, a segment on Good Morning America touted Harrington’s “very, very important study” of SIDS, while a story in the New York Post promised that her data would “bring closure to countless parents who have endured the nightmare of losing a child.”

Sadly, these claims are quite absurd. The original research paper, published on May 6, described a small-scale but interesting project: Harrington and her colleagues measured activity levels of a protein called butyrylcholinesterase in dried blood collected from about 600 babies shortly after birth, including 26 who died from SIDS and 30 who went on to die from a different condition during their first two years of life. On average, those who died from SIDS had somewhat less butyrylcholinesterase activity in their blood than healthy newborns did. According to the study’s authors, this suggests that, with further work, the protein “could potentially be used as a biomarker to identify and prevent future SIDS deaths.” If that qualifies as a scientific “miracle,” the bar is inches from the ground.

Even after decades of research, SIDS remains “unexpected, dramatic, and devastating,” as three prominent doctors put it in a New England Journal of Medicine editorial published over the weekend. If researchers had really pinpointed a biological cause for these deaths—as some press reports have claimed—it would salve parents’ anxiety and might lead to future treatments. But one need only read the new paper in its entirety to see they haven’t reached this goal.

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At best, the study represents an incremental advance. This is not meant to be an insult; science works in increments. But the numbers don’t suggest that a screening test for SIDS is really in the works, let alone one that will quickly end the scourge of infant deaths. The authors report that protein-activity levels were measured in a range of 1.7 to 23.3 units per milligram for healthy newborns, and from 2.9 to 10.8 for those who died of SIDS. Though the group averages were different overall (7.7 versus 5.6), individual values still overlapped a great deal. In other words, a low protein-activity level at birth could be found in a baby who might end up dying from SIDS, as well as one who would go on to live a healthy life.

I reached out to Harrington and her co-author Karen Waters, a professor of child and adolescent health at the Children’s Hospital at Westmead, to ask about this issue, among others. Measuring the protein “will not work as a universal screening test, for precisely the reasons that you have highlighted,” Waters told me via email. Harrington said that their “finding represents the possibility for the future identification of infants at risk for SIDS” and that the study identifies “a measurable biochemical marker (not cause)” of the condition.

The confusing and controversial status of SIDS as a formal diagnosis adds to the uncertainty. SIDS is considered a “diagnosis of exclusion,” which means that it applies only when other causes have been carefully ruled out, and also that it is likely to comprise a number of different conditions. Some forensic pathologists have abandoned the diagnosis entirely on account of this ambiguity, James Gill, the chief medical examiner of Connecticut, told me. The authors of this month’s study did not have access to autopsy details for any of their subjects, and relied in most cases on a coroner’s assessment that SIDS had been the cause of death.

Even if it were possible to develop a screening test for SIDS, we might not want to use it. As a hospital pathologist myself—which is to say, as a doctor who specializes in diagnostic testing—I know that every form of screening makes mistakes. Sometimes, the benefits from these tools are worth the harm of an occasional error. Cervical-cancer screening, for example, greatly reduces deaths even though pap smears regularly lead to unhelpful results. But a wonky SIDS test would have catastrophic ill effects. A false positive result would terrify new parents. A false negative could lead them to abandon safe-sleeping practices—or far worse, make them seem at fault if SIDS did strike. Even true results might not be much help, because early-detection tests are only as good as the treatments we use in response to them. An aggressive campaign by pediatricians to promote safer sleep practices has caused the number of SIDS deaths to plummet since the 1990s. That campaign’s advice is already given out to everyone, and would not change on the basis of a blood test.

Given that no further interventions would be available for infants flagged as high-risk by a screening test for SIDS, I asked the authors whether it makes sense to measure babies in this way. Waters responded by citing the “fundamental principle” that you should not screen newborns for disease unless you can “affect the outcome for the child.” Harrington has suggested in an interview that the researchers “don’t know the shape of what the intervention will be at this stage.”

If the study’s findings were ambiguous, and its implications dubious, why did the research get so much attention in the media? Many outlets seemed impressed by its connection to The Lancet, founded in 1823, and one the world’s most prestigious medical journals. The SIDS paper did not actually appear in The Lancet, but rather in a lesser-known periodical called eBioMedicine, which happens to be published under The Lancet’s umbrella brand (along with more than 20 other journals). Media coverage glossed over that distinction, though, or ignored it altogether. (Good Morning America managed to combine the two journals’ names into a fictional publication called “eLancet.”) These errors are understandable; prominent Lancet branding on eBioMedicine’s website and web address make it easy to get confused, and journal editors sometimes take advantage of academic prestige to court media attention.

The study’s tenuous connection to The Lancet was just one small part of its appeal. More significant was Harrington’s own story: She’d lost her son to SIDS 29 years ago, and then watched as a friend lost a baby to the same ailment a few years later. Harrington spent the intervening decades trying to discover a way to prevent this tragedy for others. “I made a solemn resolution there and then to leave no stone unturned in my quest to solve the mystery of the Sudden Infant Death Syndrome,” she wrote in a request to crowdfund her research that was first posted in August 2018. Before the study was published this month, the campaign hadn’t received a contribution since 2019; now donations have been pouring in. As of yesterday, the campaign had raised about $50,000, mostly in small increments. “Since we have published our research, I have continued to be overwhelmed by the generosity of the community,” Harrington told me.

There’s no shame in soliciting funds for a good cause, and Harrington’s scrappy effort to keep her research going could be seen to merit praise. But Harrington herself has linked improbable claims about the science to overt requests for money: “To get us there, we need a lot of funding,” she told an interviewer, moments after saying that she “knows” that SIDS will be eradicated in “three to five years’ time.” (The hospital, which manages the endeavor’s charitable account, lent credence to this accelerated time frame in its press release.) An article from the Australian Broadcasting Corporation quoted Harrington making a plea for further backing: “We know what we have to do. It’s just actually getting the funding for it.” But the story, like numerous others, did not provide any appraisal of the research from independent experts, which would have helped inform potential donors. Harrington, in her email to me, reiterated her claim that screening tests and interventions “could be 3-5 years away” with appropriate funding.

Many outlets also neglected to mention the study’s known limitations, as described in the paper. In that context, the authors acknowledge that they examined relatively few subjects, and that the tested blood was more than two years old. Their results could, therefore, turn out quite differently if the technique were put into widespread practice. “There is a lot more work to be done before this can be heralded as a solution,” Waters told me in her email. “As we said in the paper, it offers new directions for research in the field.” Harrington told me that “this finding is only one bit of the puzzle and there is so much more to learn.”

Harrington’s personal accomplishments cannot be dismissed, even if new tests and treatments seem further away than she claims. Most of us never generate a speck of new scientific knowledge. To come back from tragedy, toil for decades, and then produce a promising approach for closer study … well, that may not be miraculous, but it matters all the same.

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Trump poised to clinch US$1.3-billion social media company stock award

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Donald Trump is set to secure on Tuesday a stock bonus worth US$1.3-billion from the company that operates his social media app Truth Social (DJT-Q), equivalent to about half the majority stake he already owns in it, thanks to the wild rally in its shares.

The award will take the former U.S. president’s overall stake in the company, Trump Media & Technology Group (TMTG), to US$4.1-billion.

While Mr. Trump has agreed not to sell any of his TMTG shares before September, the windfall represents a significant boost to his wealth, which Forbes pegs at US$4.7-billion.

Unlike much of his real estate empire, shares are easy to divest in the stock market and could come in handy as Mr. Trump’s legal fees and fines pile up, including a US$454.2-million judgment in his New York civil fraud case he is appealing.

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The bonus also reflects the exuberant trading in TMTG’s shares, which have been on a roller coaster ride since the company listed on Nasdaq last month through a merger with a special purpose acquisition company (SPAC) and was snapped up by Trump supporters and speculators.

Mr. Trump will be entitled to the stock bonus under the terms of the SPAC deal once TMTG’s shares stay above US$17.50 for 20 trading days after the company’s March 26 listing. They ended trading on Monday at US$35.50, and they would have to lose more than half their value on Tuesday for Mr. Trump to miss out.

TMTG’s current valuation of approximately US$5-billion is equivalent to about 1,220 times the loss-making company’s revenue in 2023 of US$4.1-million.

No other U.S. company of similar market capitalization has such a high valuation multiple, LSEG data shows. This is despite TMTG warning investors in regulatory filings that its operational losses raise “substantial doubt” about its ability to remain in business.

A TMTG spokesperson declined to comment on the stock award to Mr. Trump. “With more than $200 million in the bank and zero debt, Trump Media is fulfilling all its obligations related to the merger and rapidly moving forward with its business plan,” the spokesperson said.

While Mr. Trump’s windfall is rich for a small, loss-making company like TMTG, the earnout structure that allows it is common. According to a report from law firm Freshfields Bruckhaus Deringer, stock earnouts for management were seen in more than half the SPAC mergers completed in 2022.

However, few executives clinch these earnout bonuses because many SPAC deals end up performing poorly in the stock market, said Freshfields securities lawyer Michael Levitt. TMTG’s case is rare because its shares are trading decoupled from its business prospects.

“Many earnouts in SPACs are never satisfied because many SPAC prices fall significantly after the merger is completed,” Mr. Levitt said.

To be sure, TMTG made it easier for Mr. Trump to meet the earnout threshold. When TMTG agreed to merge with the SPAC in October, 2021, the deal envisioned that TMTG shares had to trade above US$30 for Mr. Trump to get the full earnout bonus. The two sides amended the deal in August, 2023 to lower that threshold to US$17.50, regulatory filings show.

Had that not happened, Mr. Trump would not have yet earned the full bonus because TMTG’s shares traded below US$30 last week. The terms of the deal, however, give Mr. Trump three years from the listing to win the full earnout, so he could have still earned it if the shares traded above the threshold for 20 days in any 30-day period during this time.

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B.C. puts online harms bill on hold after agreement with social media companies

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The B.C. government is putting its proposed online harms legislation on hold after reaching an agreement with some of the largest social media platforms to make people safer online.

Premier David Eby says in a joint statement with representatives of the firms Meta, TikTok, X and Snap that they will form an online safety action table, where they’ll discuss “tangible steps” towards protecting people from online harms.

Eby says the social media companies have “agreed to work collaboratively” with the province on preventing harm, while Meta will also commit to working with B.C’s emergency management officials to help amplify official information during natural disasters and other events.

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“We have had assurance from Facebook on a couple of things. First, that they will work with us to deliver emergency information to British Columbia in this wildfire season that (people) can rely on, they can find easily, and that will link into official government channels to distribute information quickly and effectively,” Eby said at a Tuesday press conference.

“This is a major step and I’m very appreciative that we are in this place now.”


Click to play video: 'B.C. takes steps to protect people from online harms'
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B.C. takes steps to protect people from online harms

 


The announcement to put the bill on hold is a sharp turn for the government, after Eby announced in March that social media companies were among the “wrongdoers” that would pay for health-related costs linked to their platforms.


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At the time, Eby compared social media harms to those caused by tobacco and opioids, saying the legislation was similar to previous laws that allowed the province to sue companies selling those products.


Click to play video: 'Carol Todd on taking action against online harms'
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Carol Todd on taking action against online harms

 


Last August, Eby criticized Meta over its continued blackout of Canadian news outlets as wildfires forced thousands from their homes.  Eby said it was “unacceptable” for the tech giant to cut off access to news on its platforms at a time when people needed timely, potentially life-saving information.

“I think it’s fair to say that I was very skeptical, following the initial contact (with Meta),” Eby said Tuesday.

Eby said one of the key drivers for legislation targetting online harm was the death of Carson Cleland, the 12-year-old Prince George, B.C., boy who died by suicide last October after falling victim to online sextortion.

The premier says in announcing the pause that bringing social media companies to the table for discussion achieves the same purpose of protecting youth from online harm.

“Our commitment to every parent is that we will do everything we can to keep their families safe online and in our communities,” the premier said in his statement.

 

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Vaughn Palmer: B.C. premier gives social media giants another chance

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VICTORIA — Premier David Eby has pushed the pause button on a contentious bill that would have allowed the province to recover health care and other costs attributed to the marketing of risky products in B.C.

Two dozen business and industry groups had called for the New Democrats to put the bill on hold, claiming it was so broadly drafted that it could be used to go after producers, distributors and retailers of every kind.

Eby claimed the pause had nothing to do with those protests. Rather, he said, it was the willingness of giant social media companies to join with the government to immediately address online safety in B.C.

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“It is safe to say that we got the attention of these major multinational companies,” the premier told reporters on Tuesday, citing the deal with Meta, Snapchat, TikTok and X, the major players in the field.

“They understand our concern and the urgency with which we’re approaching this issue. They also understand the bill is still there.”

The New Democrats maintain that the legislation was never intended to capture the many B.C. companies and associations that complained about it.

Rather it was targeted at Facebook owner Meta and other social media companies and the online harm done to young people. A prime example was the suicide of a Prince George youth who was trapped by an online predator.

Still, there was nothing in the wording of Bill 12, the Public Health Accountability and Cost Recovery Act, to indicate its application would be confined to social media companies or their impact on young people.

Eby even admitted that the law could also be used to recover costs associated with vaping products and energy drinks.

Some critics wondered if the bill’s broad-based concept of harms and risks could be used to prosecute the liquor board or the dispensers of safer-supply drugs, products with proven harms greater than any sugary drink.

Perhaps thinking along those lines, the government specifically exempted itself from prosecution under the Act.

This week’s announcement came as a surprise. As recently as Monday, Attorney General Niki Sharma told reporters the government had no intention of putting the bill on hold.

Tuesday, she justified her evasion by saying the talks with the social media companies were intense and confidential.

She said the pause was conditional on Meta and the other companies delivering a quick response to government concerns.

“British Columbians expect us to take action on online safety,” she told reporters. “What I’ll be looking for at this table is quick and immediate action to get to that better, safety online.”

A prime goal is addressing online harassment and “the online mental health and anxiety that’s rising in young people,” she said

“I’m going to be watching along with the premier as to whether or not we do get real action on changes for young people right away,” said the attorney general.

“I want to sit down with these companies look at them face to face and see what they can do immediately to improve the outcomes for British Columbians.”

Meta has already committed to rectifying Eby’s concern that it should relay urgent news about wildfires, flood and other disasters in B.C. Last year, those were blocked, collateral damage in the company’s hardball dispute with the federal government over linking to news stories from Canadian media companies.

Eby says he was very skeptical about the initial contact from the companies. Now he sees Meta’s willingness to deliver emergency information as a “major step” and he’s prepared to give talks the benefit of the doubt.

Not long ago he was scoring political points off the social media companies in the harshest terms.

“The billionaires who run them resist accountability, resist any suggestion that they have responsibility for the harms that they are causing,” said the premier on March 14, the day Bill 12 was introduced.

“The message to these big, faceless companies is, you will be held accountable in B.C. for the harm that you cause to people.”

Given those characterizations, perhaps the big, faceless billionaires will simply direct their negotiating team to play for time until the legislation adjourns as scheduled on May 16.

“The legislation is not being pulled and we’re not backtracking,” said Sharma. “We can always come back and bring legislation back.”

The government could schedule a quick makeup session of the legislature in late May or June or even in early September, before the house is dissolved for the four-week campaign leading up to the scheduled election day, Oct. 19.

More likely, if the New Democrats feel doublecrossed, they could go back to war with the faceless billionaires with a view to re-enacting Bill 12 after a hoped-for election victory.

Even if the New Democrats get some satisfaction from the social media companies in the short term, they have also framed Bill 12 as a way to force the marketers of risky products to help cover the cost of health care and other services.

They probably mean it when they say Bill 12 is only paused, not permanently consigned to the trash heap.

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