How SIDS research became a media train wreck

Sudden Infant Death Syndrome, or SIDS, “Will be a thing of the pastAccording to Carmel Harrington, a sleep researcher at a children’s hospital in Westmead, Australia. A press release Explaining her new research, announced this month, as a “game-changing” effort When “The world’s first breakthrough” that can prevent future death due to tragic illness. The celebration quickly spread on social media: “They found the cause of SIDS. I’m sorry to cry for all my parents.” Viral tweets Declared. “The closest thing to a miracle for a long time” another.. The media immediately picked up the story.Friday segment Good morning, America Harrington promotion “Very, very important research” Sudden infant death syndrome New York post Her data is “Bring closure to countless parents Those who have endured the nightmare of losing their children. “

Sadly, these claims are very ridiculous.original Research paper, Described a small but interesting project released on May 6th. Harrington and her colleagues measured the activity level of a protein called butyrylcholinesterase in dry blood collected from about 600 babies shortly after birth, including 26 who died of SIDS and 30 who continued. Dying in another state in the first two years of life. On average, people who died of SIDS had slightly less butyrylcholinesterase activity in their blood than healthy newborns. According to the authors of the study, this suggests that further studies may “potentially use the protein as a biomarker to identify and prevent future SIDS death.” If it is considered a scientific “miracle”, the bar is a few inches above the ground.

After that Decades of researchSIDS has three prominent doctors New England Journal of Medicine editorial It was released on the weekend.If researchers actually identify the biological causes of these deaths-as some people push Reportedly, it may relieve parents’ anxiety and lead to future treatments. But all you have to do is read the entire new paper and make sure that this goal has not been achieved.

At best, research represents gradual progress. This does not mean insult. Science works in stages. However, the numbers do not suggest that SIDS screening tests are actually underway, not to mention the immediate end of the tragedy of sudden infant death. The authors report that protein activity levels were measured in the range of 1.7-23.3 units per milligram in healthy newborns and 2.9-10.8 units in people who died of SIDS. The group averages were generally different (7.7 and 5.6), but the individual values ​​still overlap quite a bit. In other words, low levels of protein activity at birth can be seen in babies who may die of SIDS or who lead a healthy life.

I contacted Harrington and her co-author, Karen Waters, a professor of pediatric and adolescent health at the Children’s Hospital in Westmead, to ask questions about this issue. The protein measurement “doesn’t work as a universal screening test for the reasons you emphasized,” Waters told me by email.Harrington said, “The discovery is possibility “For future identification of infants at risk of SIDS” and the study identifies “measurable biochemical markers (not causes)” of the condition.

Confused and controversial SIDS status Formal diagnosis Increases uncertainty. SIDS is considered an “exclusion diagnosis”. That is, it applies only if other causes are carefully ruled out and may include various conditions. Some forensic pathologists have completely abandoned the diagnosis because of this ambiguity, James Gil, Connecticut’s chief coroner, told me. The authors of this month’s study did not have access to autopsy details for any subject and most often relied on the coroner’s assessment that SIDS was the cause of death.

Even if you can develop a SIDS screening test, you may not want to use it. As a hospital pathologist, a doctor who specializes in diagnostic tests, I know that all forms of screening make mistakes. Sometimes the benefits from these tools are worth the harm of occasional errors.For example, screening for cervical cancer is significantly Reduce death Papanicolaou stain specimens are regularly Useless results.. However, unstable SIDS tests have a devastating negative effect. False positive results will scare new parents.False negatives can lead them to abandon their safe sleep habits-or worse, make them Seems to be negligent If SIDS strikes. Early detection tests are as good as the treatments used accordingly, so even real results may not be very useful.aggressive motion The number of SIDS deaths by pediatricians to promote safer sleep habits Plunge From the 1990s. The advice for that campaign has already been given to everyone and will not change based on blood tests.

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We asked the authors if it makes sense to measure infants in this way, given that infants flagged for high risk by SIDS screening tests have no further intervention. Waters cites the “basic principle” that newborn illnesses should not be screened unless they can “influence the outcome of the child.”Harrington suggested in interview “We don’t know what the intervention will look like at this stage,” the researchers said.

If the findings are ambiguous and the impact is questionable, why did the survey get so much attention in the media? Many outlets LancetFounded in 1823, it is one of the most prestigious medical journals in the world. SIDS papers did not actually appear LancetNot in a lesser-known periodical eBioMedicineThis happens to be LancetUmbrella brand (and more than 20 other journals).Media coverage Shiny But that distinction, or Ignored It completely.. ((((Good morning, America We were able to combine the names of the two journals into a fictitious publication called “eLancet”. ) These errors are understandable.stand out Lancet Branding eBioMedicineWebsite And web addresses can be confusing, and journal editors take advantage of academic fame. Court media attention..

Dilute relationship with research Lancet It was just part of its charm. More importantly, it was Harrington’s own story. She lost her son to SIDS 29 years ago and saw her friend lose her baby to the same illness a few years later. Harrington spent decades in the meantime trying to find a way to prevent this tragedy for others. “I made a solemn resolution there, leaving no stones in the quest to solve the mystery of Sudden Infant Death Syndrome,” she said. Crowdfunding Her survey was first posted in August 2018. Prior to the survey’s release this month, the campaign hadn’t received donations since 2019. Donations are currently being received. As of yesterday, the campaign was raising about $ 50,000, mostly in small increments. “Since we published our research, I’ve been overwhelmed by the generosity of the community,” Harrington told me.

Raising funds for good reason is not shameful, and the wasted effort to continue Harrington’s research can be considered commendable. But Harrington himself linked an unlikely claim to science to an obvious demand for money. I need a lot of money“She told the interviewer shortly after she said she” knows “that SIDS will be eradicated” three to five years later. ” (The hospital that manages the charitable account for this effort has given credit to this accelerated time frame in a press release.) article According to an article by the Australian Broadcasting Corporation, Harrington is pleading for further help. He’s just actually raising money. However, this story, like many others, did not provide an assessment of research from independent experts that would help inform potential donors. In an email to me, Harrington reiterated her claim that screening tests and interventions “could be three to five years away,” with adequate funding.

Many outlets also neglected to mention known limitations of the study, as explained in the paper. In that context, the authors acknowledge that they tested a relatively small number of subjects, and that the blood tested was more than two years old. Therefore, if this technique is widely practiced, the results can be quite different. “There’s a lot more to do before this is foretold as a solution,” Waters told me in her email. “As mentioned in the paper, it provides a new direction for research in this area,” Harrington told me, “this discovery is just one part of the puzzle and there is a lot to learn.” ..

Harrington’s personal achievements cannot be dismissed, even if new tests or treatments appear farther than she claims. Most of us do not create spots of new scientific knowledge. Recovering from tragedy, struggling for decades, and creating a promising approach for more in-depth research … well, it may not be miraculous, but it’s all just as important.