Researchers get bold on autism screening, talking to reporters about science shouldn’t be scary, and parents are divided on gene-editing ethics.
A bold op-ed by Alycia Halladay, chief science officer of the Autism Science Foundation, urges healthcare workers to ignore the task force’s stance, which is to reserve screening for children who show symptoms during a clinic visit or whose parents have concerns.
“Our organization and many others hope that health care providers in all communities choose not to give the task force recommendations any weight, and instead flat out disregard them,” Halladay writes in the op-ed, published Wednesday in Live Science. “What matters is that pediatricians, health care providers and, importantly, parents, understand that screening in all children is the essential first step toward improving outcomes in children who are ultimately diagnosed with autism.”
A new analysis, published last week in eLife, suggests peer review scores are poor predictors of a grant’s productivity. For instance, grants that score in the 3rd percentile generate a similar number of publications and earn a similar number of citations as those that score in the 20th percentile. The National Institutes of the Health typically fund grants in the 10th percentile, according to the study.
“The best science is not necessarily receiving support under the present system,” the study reads. “The manner in which scarce research funds are allocated deserves greater attention.”
An article in this week’s Nature explores the murky middle ground between these two possibilities. Author Erika Check Hayden asked parents of children with albinism, blindness or Down syndrome whether they would have edited away their child’s disabilities. The resounding answer: “No.”
The line between ‘no’ and ‘yes’ seems to depend on whether a genetic disorder causes intense pain, severe disability or death. Matt Wilsey, a technology entrepreneur in San Francisco, has a daughter with NGLY1 deficiency — a rare and debilitating disorder once mistaken for Rett syndrome.
“As a parent with an incredibly sick child, what are we supposed to do — sit by on the sidelines while my child dies? There’s zero chance of that,” Wilsey told Nature. “CRISPR is a bullet train that has left the station — there’s no stopping it, so how can we harness it for good?”
The three-part guide will walk you through how to prepare for interviews with reporters and how to interact with them. It also explains what to expect after the interview is over.
The guide is replete with handy tips, like this old standby: Use analogies to break down a complicated topic. “Analogies don’t need to be perfect, but effective in capturing the essence of research,” it reads.
It also stresses that reporters are just as invested in getting things right as you are. Their reputation depends on it.
“Jack of the Red Hearts” tells the story of Jack, a teenage girl on the run from her probation officer who finds work as a live-in helper for Glory, an 11-year-old with autism. The two form a surprising bond. Then, of course, Jack’s past catches up with her.
The film’s director, Janet Grillo, says she wanted to broaden the public’s understanding of autism. Her 22-year-old son was diagnosed at age 2 but is “mildly impacted” compared with Glory.
“I do feel that my experience as a mother is my truth in this story,” Grillo told the New York Post. “My hope is, next time you’re in the grocery store and you see a mother of a child who’s throwing a wild tantrum, instead of deciding that child is a brat, thinking, ‘Maybe that’s a child with autism.’ Maybe saying, ‘How can I help?’”
The film hits theaters today.
