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News / Spotted

Screening scrutiny; tracking technology; sensitive Santa

by  /  23 December 2016

WEEK OF
December 19th

Top 10

Nature’s list of “Ten people who mattered this year” includes a Brazilian physician who sounded the alarm about Zika and an American biologist who advocated safe use of gene-editing technology. The list appeared in the journal on Monday.

In 2015, Celina Maria Turchi Martelli, an infectious-disease researcher in Recife, Brazil, began looking into a spike in the number of newborns with abnormally small heads, or microcephaly. “She quickly became convinced that the country was facing a public-health emergency,” journalist Declan Butler writes, and organized a task force to investigate. Martelli and her team ultimately linked the microcephaly to the Zika virus.

Kevin Esvelt, assistant professor of media arts and sciences at the Massachusetts Institute of Technology, helped pioneer ‘gene drive’ technology, in which genetic changes to an organism are designed to propagate through a population. Esvelt has “worked to ensure that ethics comes before experiments,” writes Nature reporter Heidi Ledford. He has pressed for more discussion of the technology’s ethical implications and has put forward safer ways to use it.

Other honorees include a physicist who helped detect gravitational waves and a coral researcher who documented extensive damage to the Great Barrier Reef.

Sources
Nature / 19 Dec 2016

Nature’s 10

Screening scrutiny

The jury is still out on universal screening for autism, the U.S. Preventive Services Task Force wrote in its report to Congress this month.

The task force issues evidence-based recommendations for preventive medical services. It also identifies “high-priority evidence gaps” in preventive medicine.

One of these gaps involves screening for autism in all children — including those who seem to be developing typically. Many autism researchers advocate routine screening to identify those who need services as early as possible, Spectrum reported last year.

But the task force says there hasn’t been enough research on the effectiveness of universal screening in certain demographic groups, such as low-income and minority populations that may have limited access to medical care. It also points to a dearth of data on whether screening actually improves health outcomes.

The task force identified five other high-priority questions, including whether electronic cigarettes can help smokers kick their habit. “Future research in these areas can help fill these gaps and would likely result in important new recommendations that will help to improve the health of Americans,” the report reads.

Tracking technology

Advocates for people with autism are clashing over the use of tracking devices to keep tabs on children with developmental disabilities, Ari Ne’eman, president of the Autistic Self-Advocacy Network, reported on Vox Saturday.

Some children with autism wander from their homes or schools, sometimes with tragic consequences. “Kevin and Avonte’s Law,” passed by the U.S. Senate in July, would provide federal funding to local law enforcement agencies to create tracking programs for children with developmental disabilities. It was named after two boys with autism who drowned after wandering.

Proponents of the law say that tracking devices can help police find and protect children who wander.

But no data support that contention, Ne’eman writes. His group was neutral on the Senate bill. But the House of Representatives passed a version of the bill this month with language that could expand use of the technology. The House bill may allow officials to track to children with disabilities who are deemed a danger to others.

“Allowing tracking devices — which can include locking bracelets and anklets — to be applied for purposes other than locating missing persons seemed to many critics to open up the floodgates for their use in ways that would inappropriately limit the autonomy of disabled Americans,” Ne’eman writes.

Looking back

Francis Collins, director of the National Institutes of Health, reflected on his tenure in an interview published by STAT last Friday.

He recounted several new initiatives as successes. These include the National Center for Advancing Translational Sciences, which aims to speed consumer access to novel treatments, the BRAIN Initiative, and a cancer prevention and treatment program called Cancer Moonshot.

Collins says he is excited about the expected spring launch of the Precision Medicine Initiative, renamed the All of Us Research Program. In the program, researchers aim to gather genetic and lifestyle information from more than a million Americans from diverse backgrounds. The goal: to better understand, and develop targeted treatments for, a range of conditions.

Collins says he regrets being unable to secure more funding for the National Institutes of Health. “That put the squeeze on scientists that depend on us for grant support,” he told STAT.

At the time of the interview, President-elect Donald Trump had not asked Collins to remain in his position, though some Congressional Republicans have encouraged Trump to keep Collins on.

Sensitive Santa

Each December, a New Jersey man with autism travels across the state to visit children on the autism spectrum, Inside Edition reported Monday.

Many children with autism are easily overwhelmed by sensory stimuli. So Kerry Magro transforms himself into a ‘sensory-sensitive’ Santa Claus. He holds Santa meet-and-greet events that are dimly lit and relatively quiet.

“I try to meet them where they are,” Magro wrote on his blog. “Whether it’s me sitting on the ground playing toys with them or keeping my distance if they don’t want to be touched.”

He met with nearly 200 children this year.

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