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How a SIDS Study Became a Media Train Wreck 2022

Sudden Infant Death Syndrome, or SIDS, “will be a thing of the past”, according to sleep researcher Carmel Harrington at the Children’s Hospital of Westmead in Australia. A press release this month describes their new study as a “game-changing” effort and a “world first breakthrough” that could prevent future deaths from the tragic disease. The celebration quickly spread on social media: “They found the cause of SIDS. Excuse me while I cry for all the parents, “A Viral Tweet declared. “closest to a miracle in a long time,” said one more, The press soon picked up on the story. On Friday, a segment good Morning America A story told of Harrington’s “very, very important study” about SIDS, while New York Post promised that her data would “bring closer to the countless parents who have endured the nightmare of losing a child.”

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

Even after decades of research, SIDS remains “unexpected, dramatic, and devastating,” as three leading doctors described it as a New England Journal of Medicine Editorial published over the weekend. If researchers had indeed pinpointed a biological cause for these deaths – as some press reports have claimed – it would allay parental anxiety and could lead to future treatments. But you just need to read the new paper in its entirety to see that they haven’t reached this goal.

At best, the study represents an incremental advance. It is not meant to offend; Science works in increments. But the numbers don’t suggest that a screening test for SIDS is actually working, let alone put an end to the scourge of infant mortality. The authors report that protein-activity levels were measured from 1.7 to 23.3 units per milligram for healthy newborns and from 2.9 to 10.8 for those who died from SIDS. Although the group mean differed overall (7.7 vs 5.6), individual values ​​still overlapped a great deal. In other words, a low protein-activity level at birth can be found in a baby who may eventually die of SIDS, as well as lead a healthy life.

I reached out to Harrington, professor of child and adolescent health at Children’s Hospital in Westmead, and her co-author Karen Waters to ask about this issue. Waters told me via email that measuring proteins “won’t work as a universal screening test, for exactly the reasons you’ve highlighted.” Harrington said that his “discovery represents” Possibility for the identification of infants at risk of SIDS in the future” and that the study identifies a “measurable biochemical marker (not a 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,” meaning that it only applies when other causes have been carefully ruled out, and that it can include many different conditions. Connecticut’s chief medical examiner, James Gill, told me that some forensic pathologists have abandoned diagnosis altogether because of this ambiguity. The authors of this month’s study did not have access to autopsy details for any of their subjects, and in most cases relied on a coroner’s assessment that SIDS was the cause of death.

Even if it were possible to develop a screening test for SIDS, we would not want to use it. As a hospital pathologist—that is to say, as a doctor who specializes in diagnostic testing—I know that every form of screening makes mistakes. Sometimes, the benefits of these tools are worth the loss of an occasional error. Cervical-cancer screening, for example, greatly reduces deaths, even though Pap smears routinely give unhelpful results. But a wonky SIDS test will have devastating side effects. A false positive result will frighten new parents. A false negative can lead them to abandon safe-sleeping practices—or worse, feel at fault if SIDS strikes. Even accurate results may not be of much help, because early detection tests are only as good as the treatments we respond to them. An aggressive campaign by pediatricians to promote safe sleep practices has led to a decline in the number of SIDS deaths since the 1990s. That campaign has already been advised to everyone, and will not change based on a blood test.

Given that no further intervention would be available for infants marked as high risk by a screening test for SIDS, I asked the authors whether it made sense to measure children in this way. Waters responded by citing a “fundamental principle” that you should not test newborns for disease unless “it can affect the outcome of the child”. Harrington suggests in an interview that researchers “do not know the size of the intervention at this stage.”

If the study’s findings were unclear, and its implications questionable, why did the research receive so much attention in the media? Several outlets seemed affected by its connection the Lancet, founded in 1823, and one of the world’s most prestigious medical journals. SIDS paper was not actually revealed the Lancetrather in a lesser-known periodic called e-biomedicinewhich is published under the LancetUmbrella brand (along with over 20 other magazines). Media coverage, however, highlighted that distinction, or ignored it altogether. ,good Morning America managed to combine the names of the two journals into a fictional publication called “eLancet”.) These errors are understandable; prominent Knife branding on e-biomedicineIts website and web address make it easy to confuse, and journal editors sometimes take advantage of academic reputations to attract media attention.

weak study link the Lancet That was only a small part of its appeal. Harrington’s own story was more significant: She lost her son to SIDS 29 years earlier, and then watched a friend lose a child to the same disease a few years later. Harrington spent the intervening decades trying to find a way to prevent this tragedy for others. “I made a serious resolution there and then left no stone unturned in my quest to solve the mystery of 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 had received no contributions from 2019; Now the donation has started. As of yesterday, the campaign had raised about $50,000, mostly in small increments. “I have been overwhelmed by the generosity of the community since we published our research,” Harrington told me.

There is no shame in soliciting funds for a good cause, and Harrington’s defiant effort to continue his research can be seen as worthy of praise. But Harrington herself linked unreasonable claims about science to requests for money: “To get us there, we need a lot of money,” she told an interviewer, moments later adding that she “knows”. that SIDS will be eradicated. Three to five years time. (The hospital, which manages the effort’s charitable account, credited this expedited deadline in its press release.) An article by the Australian Broadcasting Corporation quoted Harrington as making a plea for further support: “We know what we have to do. It’s actually getting money for it. But the story, like many others, provides no evaluation of research from independent experts, which would have helped inform potential donors. Harrington, in his email to me, reiterated his claim that screening tests and interventions “could be 3-5 years away” with appropriate funding.

Several outlets also neglected to mention the known limitations of the study, as described in the paper. In that context, the authors acknowledge that they examined relatively few subjects, and that the blood tested was more than two years old. Therefore, if the technique is put into widespread practice, their results can be quite different. “There is a lot more work to be done before this can be rolled out as a solution,” Waters told me in his email. “As we said in the paper, this provides new directions for research in the field.” Harrington told me that “this discovery is only a small part of the puzzle and there is much more to learn.”

Harrington’s personal achievements can’t be dismissed, even if the new tests and treatments seem to go far beyond his claims. Most of us never generate a single speck of new scientific knowledge. Coming back from tragedy, decades of toil, and then closer study to build a promising approach… well, it may not be miraculous, but it’s the same for everyone.

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