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Screening Slam; Media 101; Identity Crisis

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Screening Slam; Media 101; Identity Crisis Spectrum | Autism Research News https://www.spectrumnews.org SPOTTED Screening slam; media 101; identity crisis BY KATIE MOISSE 26 FEBRUARY 2016 WEEK OF FEBRUARY 22ND Screening slam In the week since the U.S. Preventive Services Task Force stood firmly against recommending routine screening for autism, researchers, clinicians and advocates alike have voiced their discontent. 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.” SOURCES: Live Science / 24 Feb 2016 Ignore the bad advice — all kids need autism screening http://www.livescience.com/53831-why-all-kids-need-autism-screening.html Poor predictor The peer review process is pretty good at separating good research from really bad. But nowadays, peer reviewers are also tasked with plucking the most promising grant proposals from a swelling sea of worthy ones. 1 / 4 Spectrum | Autism Research News https://www.spectrumnews.org 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.” SOURCES: eLife / 16 Feb 2016 Research: NIH peer review percentile scores are poorly predictive of grant productivity http://elifesciences.org/content/5/e13323v1 Identity crisis There has been much discussion about the ethics of gene editing. On the one hand, it could — theoretically — eliminate deadly genetic disorders. On the other hand, what’s to stop people from using it to stack the genetic cards for a tall or athletic child? 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?” SOURCES: Nature / 23 Feb 2016 Should you edit your children’s genes? http://www.nature.com/news/should-you-edit-your-children-s-genes-1.19432 2 / 4 Spectrum | Autism Research News https://www.spectrumnews.org Media 101 Talking to the press about science shouldn’t be scary; it’s a great opportunity to explain why your work matters. That’s why Sense About Science, a Brooklyn-based nonprofit dedicated to promoting scientific literacy, released a media guide for scientists earlier this month. 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. SOURCES: Sense About Science / Media guide for scientists http://www.senseaboutscienceusa.org/guides-for-scientists/ Meaningful movie Most movie characters with autism are quiet, quirky boys. But a new movie that revolves around a nonverbal girl with autism spotlights the other end of the spectrum. “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.’ 3 / 4 Spectrum | Autism Research News https://www.spectrumnews.org Maybe saying, ‘How can I help?’” The film hits theaters today. SOURCES: New York Post / 24 Feb 2016 Director brings the reality of autism to the big screen http://nypost.com/2016/02/24/director-brings-the-reality-of-autism-to-the-big-screen/ 4 / 4 Powered by TCPDF (www.tcpdf.org).
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