Karen S. Rommelfanger, Ph.D. is an Assistant Professor in the Departments of Neurology and Psychiatry and Behavioral Sciences, the Neuroethics Program Director at Emory University’s Center for Ethics, and Neuroscience Editor-in-Residence at the American Journal of Bioethics Neuroscience. Dr. Rommelfanger’s research explores how evolving neuroscience and neurotechnologies challenge societal definitions of disease and medicine. She edits and founded The Neuroethics Blog.Dr. Jennifer Sarrett is currently a Lecturer at Emory University’s Center for the Study of Human Health, where she teaches courses in Health Humanities, Bioethics and Disability, and Mental Illness and Culture. Her work focuses on intellectual and developmental disabilities (I/DD) as they relate to culture, disability rights, and ethics. She began working in the field of autism and developmental 15 years ago as a special education instructor and consultant in the U.S. and abroad. Florida gas prices jump 12 cents; most expensive since 2014 You have entered an incorrect email address! Please enter your email address here LEAVE A REPLY Cancel reply TAGSAutismtheconversation.comWorld Autism Awareness Day Previous articleVote Wednesday in The Apopka Voice Reader’s Poll – Seat #2 RunoffNext articleThe Pulse shooter widow’s trial and the Apopka runoff election highlight the discussion on Let’s Talk About It Denise Connell RELATED ARTICLESMORE FROM AUTHOR Please enter your name here Gov. DeSantis says new moment-of-silence law in public schools protects religious freedom UF/IFAS in Apopka will temporarily house District staff; saves almost $400,000 Please enter your comment! World Autism Awareness DayBy Karen Rommelfanger and Jennifer Sarrett and first published on theconversation.comFor children with autism, early intervention is critical. Therapies and education – especially in the first two years of life – can facilitate a child’s social development, reduce familial stress and ultimately improve quality of life.But while we can reliably diagnose autism spectrum disorder (ASD) at 24 months, most children are diagnosed much later. This is largely due to a lack of resources, poor adherence to screening guidelines and the fact that primary care physicians are often uncomfortable talking about autism risk to parents.But what if we could use a simple, routine test to screen every baby for autism? It’s not as far-fetched as it sounds. Larger-scale clinical trials for an eye-tracking device that could be used to predict autism are slated to begin this year.This presents a new and unique set of ethical concerns. Technologies that predict the possibility of a neurological disorder have the weight of affecting conceptions of not just “what” these children have but “who” these children will become.As a neuroethicist and autism researcher, we believe it is time to have a conversation about these technologies, and what it will mean for parents and children or for people with autism.Why use eye-tracking to predict autism?Many researchers have found that autistic children prefer to look at different things than typically developing children. This is called gaze preference. In fact, gaze preference changes can be detected prior to the onset of autism. Researchers have been using eye-tracking devices to record where babies gaze when viewing videos of social scenes. And they have been using this device not to diagnose autism, but to predict autism.A 2013 study using an eye-tracking device found that differences in gaze preference can be detected in infants as young as two months. When viewing videos, the infants who look at mouths more than eyes and objects more than people are more likely to later be diagnosed with autism. These infants experienced a decline in attention to other people’s eyes.The researchers from this study are working to replicate these findings in larger studies and are heading up the development of the eye-tracking device slated for clinical trials this year, and should the trials be successful, researchers will seek FDA approval for the device.The device is noninvasive, relatively easy to use and portable. And it could provide a standardized, objective measure for predicting autism. In other words, it would be a pre-diagnostic tool. This means that, by identifying the possibility of autism early, eye-tracking devices could increase the chances that children will be officially diagnosed earlier. This would especially help children who tend to be diagnosed at later ages because of disparities related to race or geography.In fact, researchers have suggested it could be used as part of a routine well-baby checkup for 18- to 24-month-olds. And if the technology proves to be useful in predicting autism in infants, why wouldn’t the device one day be utilized even earlier for two- or six-months-olds? A pre-diagnostic assessment for autism could be easily built into regular checkups, instead of waiting for parents to report symptoms and get an appointment with a specialist. This could be a major leap forward for getting kids diagnosed early with ASD and started on therapy, or providing interventions even prior to the development of autistic traits.What does ‘risk’ of autism mean?Imagine your baby is assessed for pre-diagnostic autism with an eye-tracking device, and you learn that he or she is likely to be later diagnosed with autism.What does that mean? How should we talk to parents about this? And bear in mind that autism is highly variable and has a very wide range of both symptom profile and age of onset, which complicates how accurate such an assessment can be.A positive assessment would indicate a higher likelihood of the child being diagnosed with autism. A negative one would indicate a lower likelihood. That is not the same thing as getting a diagnosis of autism in infancy. This is pre-diagnostic. A positive assessment could be used to justify an early therapeutic regimen even prior to an autism diagnosis. Early intervention can provide long-lasting improvements in the quality of life of the children, families, and caregivers of children with autism. For pre-diagnosed children, the hope would be that intervening before the development of significant autistic traits would be even more beneficial.The promise of having an opportunity to provide earlier intervention – perhaps earlier than ever before – and to implement this technology in routine community pediatric care requires that we consider the development of this technology very carefully.For example, what exactly will parents be told upon receiving such an assessment? The word “risk” may fail to communicate the vast range of possible outcomes and instead place too much focus on negative outcomes related to an autism spectrum diagnosis (ASD). Not every child who receives a positive assessment, after all, will actually be diagnosed with autism (to be sure, even with a tool with as much promise as eye-tracking, there will be false positives).We should be mindful of the effect a positive assessment (false positive or not) could have a child and their family. In many cultures, for instance, a condition like autism would stigmatize an entire family.In the absence of care and resources, especially for children so young, a positive assessment (even if the assessment is found to be wrong or a false positive) could be seen as more of a sentence rather an opportunity for intervention, a sentiment that could occur even within research trials.How do you treat a child “pre-diagnosed” with autism?While several research groups have raised the possibility of an objective test for toddlers using the eye-tracking device, eye-tracking has also been used in a preliminary study to predict autism in two- to six-month-olds. What if, in the future, babies are regularly assessed at younger ages, for which we do not yet have interventions? What could (and what should) a parent do in that situation?There are currently no evidence-based interventions available for babies under 12 months. The next phase of studies following upcoming trials will involve testing the development of a novel early intervention for 12-month-olds. Other researchers are attempting to develop interventions for six-month-old infants.A positive assessment might motivate parents to invest unnecessarily in expensive interventions, surveillance, and treatments. It could also lead to changes in the life trajectories of the child, caregivers and entire families such as changes in their financial plans and reallocation of time and material resources to a child’s early intervention or care.Even after a false positive (an assessment for the high risk that is determined to be wrong) is identified and the likelihood of getting a diagnosis of autism is determined to be quite low, caregivers may be unable to stop looking for signs of autism as a child ages.There are no autism-specific medications (because we still do not know the causes of autism), though drugs are frequently used to treat children for a variety of autism-related symptoms.In fact, psychotropic drugs have been prescribed to children less than two years of age, and risks of these medications on early development have yet to be determined.And adherents of a growing neurodiversity movement – an advocacy position that rejects notions that autism is unwanted and should be cured and, instead, acknowledges autism as a natural variant of human neurological development – would resist the use of “risk” in relation to ASD.Not a diagnosis, but a pre-preexisting conditionPolicymakers must consider the impact of the possible integration of these tools into regular pediatric practice and infant care as a new, community-wide pre-diagnostic assessment tool.Predictive detection technologies such as these will present a new set of policy considerations. Will insurers pay for the test? If they do, will they pay for treatment and intervention afterward? Because of the potential for long-term health-care savings, would there be penalties from insurers for not undergoing such an assessment? Right now, we just don’t know.Keep in mind that insurers were not prohibited from denying people coverage for preexisting coverage until the Affordable Care Act (ACA) was passed. But with this test, we aren’t talking about a preexisting condition. We are talking about a predictive technology, a “pre” whose results essentially create a new category of health or illness, well before the condition even becomes a preexisting one. Think of it as a pre-preexisting condition. This situation is not addressed by the ACA.The insurance implications can spread beyond childhood. How a predictive assessment will affect life insurance policies and long-term care insurance is unknown.Because information about one’s brain health often feels especially identity-forming, privacy policies will need to be created to determine how pre-diagnostic information be kept and who will have access to the results of these assessments. Will schools, future employers or insurance agencies have access to this information?As eye-tracking devices head toward clinical trials, it is critical to think about and address these concerns in a public forum and alongside the development of these technologies.Without such a discussion, these tools, despite their enormous potential, risk losing resources and public support to be fully developed and advanced or risk being underused or not used properly at all. Share on Facebook Tweet on Twitter Save my name, email, and website in this browser for the next time I comment.
The vast majority of the 12,500 chemicals used by the $50 billion beauty industry have never been assessed for safety.Dear EarthTalk: I know that there are many issues with personal care products being unsafe for our health, but where do I look to find out what’s safe and what’s not?— Mary Pulaski, Trenton, NJThe average American uses about 10 personal care products each day, resulting in exposure to some 100 unique chemicals. But the vast majority of the 12,500 chemicals used by the $50 billion beauty industry have never been assessed for safety, according to the Campaign for Safe Cosmetics (CSC), a coalition of eight non-profits concerned about the health of cosmetics and personal care products.“Many of these chemicals are linked to adverse health effects like cancer, birth defects and other serious health issues,” CSC reports. And with cosmetics chemicals showing up in breast milk and umbilical cord blood, not to mention rivers, lakes and drinking water aquifers, it is indeed a problem that affects us all.Unfortunately for American consumers, these products aren’t held to the same high safety standard as foods and drugs in the United States, and as such manufacturers do not have to disclose ingredients on their products’ labels. That means it’s up to consumers to educate themselves as to what products to buy and which to avoid if human health and the environment are concerns.To the rescue comes the non-profit Environmental Working Group (EWG), which launched its SkinDeep database back in 2004 to give consumers a way to learn about what’s in the products they use on their skin and bodies. Today, SkinDeep—which is free to use and has a user-friendly, keyword-searchable interface—features health and safety profiles on 69,000 different cosmetics and personal care products.“Our aim is to fill in where industry and government leave off,” reports EWG, whose researchers cross-reference hundreds of safety studies and nearly 60 toxicity and regulatory databases against thousands of product ingredient labels to help consumers find the safest cosmetics and personal care items.Beyond searching for your most frequently used creams, gels and elixirs to get the low-down on their safety, users can also learn what to avoid by browsing the site’s “What Not to Buy” section. Harsh soaps, anything with chemical fragrances, many nail polishes and most dark permanent hair dyes top the list of products health-conscious consumers should steer clear of—or at least check out on SkinDeep. The website lists safer versions of all these product types for those who just can’t live without.But public health advocates and environmentalists alike, of course, would prefer that all personal care products could be trusted to not be rash-inducing, carcinogenic or otherwise harmful. CSC has been lobbying Congress about the need for stricter laws and U.S. Food and Drug Administration (FDA) oversight, and last year was instrumental in getting the Safe Cosmetics Act (HR 2359) introduced into the House of Representatives. While the bill stalled in committee, it would have required the FDA to create a list of specific contaminants likely to be found in certain cosmetics ingredients and provide testing protocols to determine which ones qualified for warning labels, phase-outs or outright bans. Whether a similar bill will come up again anytime soon remains to be seen. In the meantime, consumers should make sure to visit the SkinDeep database before lathering up.CONTACTS: EWG’s SkinDeep Database, www.ewg.org/skindeep; CSC, www.safecosmetics.org.EarthTalk® is written and edited by Roddy Scheer and Doug Moss and is a registered trademark of E – The Environmental Magazine (www.emagazine.com). Send questions to: [email protected] Subscribe: www.emagazine.com/subscribe. Free Trial Issue: www.emagazine.com/trial.
___Notre Dame canceled its Wednesday football practice and might take Thursday off as well in response to the school’s decision to go to online classes because of a coronavirus outbreak on campus.The Rev. John Jenkins, the Notre Dame president, announced in-person undergraduate classes would be canceled through Sept. 2. About 150 students have tested positive.Notre Dame is imposing restrictions on student activity, including limiting access to dormitories to residents and barring students from major gathering places on campus.The Fighting Irish football program announced last week there have been four positive test results for COVID-19 out of 619 tests done since players returned to campus in June. In Wednesday’s announcement, the school said the pause would last until at least 5 p.m. Thursday. That came two days after UNC canceled in-person undergraduate classes in favor of remote instruction.The move includes the closure of campus recreation facilities, though dining halls and libraries will remain open in limited capacity.In a statement, athletics director Bubba Cunningham said school officials “want to make sure we continue to do everything we can to ensure that that our teams, campus and community remain healthy.‘’Athletes will have continued access to services such as academic support and medical care.The decision to switch to remote instruction was made after four coronavirus clusters in student housing and a fraternity surfaced in the past week. The school plans to allow athletes, international students, ROTC students and students with hardships such as the lack of online access at home to remain in campus housing if they choose. The decision announced Tuesday night comes after there were active cases reported for seven students and four staffers. The school said health officials have instructed the individuals to isolate while recovering, while those in close contact with the active cases have been instructed to quarantine.___The largest 10-kilometer road race in the United States will be run virtually in 2020.The Peachtree Road Race in Atlanta, which has been held on the Fourth of July since its inaugural event in 1970, shifted to a Thanksgiving date in hopes of staging the race during the coronavirus pandemic. It normally attracts some 60,000 runners.But the Atlanta Track Club now says the race will not be run down the city’s famed Peachtree Street because of safety concerns. Georgia has been one of the nation’s hardest-hit states during the pandemic, recording nearly 250,000 confirmed cases and more than 4,700 deaths. The second game in the series is scheduled for November 2032 at LaVell Edwards Stadium in Provo, Utah. The two schools have never met in football and both are scrambling to fill schedules that were pretty much wiped out by the coronavirus pandemic. Army lost games against Bucknell, Princeton, Oklahoma, UMass, Connecticut, Eastern Michigan, Miami of Ohio, and Buffalo, while BYU lost eight games.The Black Knights have yet to finalize their schedule, but they open the season Sept. 5 at Michie Stadium against Middle Tennessee State. BYU opens its season on Sept. 7 at Navy.___North Carolina has immediately suspended athletics activities for all sports teams for at least 24 hours due to a “continued upward trend in positive COVID-19 tests on campus.” Share This StoryFacebookTwitteremailPrintLinkedinRedditThe Latest on the effects of the coronavirus outbreak on sports around the world:___Army and Brigham Young have agreed to a home-and-home football series, with the first game between the two independents slated for Sept. 19 at Michie Stadium as both schools piece together new schedules. “As coronavirus has spiked in recent weeks here in Georgia, we recognize that this decision is the best and only responsible way forward,” executive director Rich Kenah said in a statement.The track club now plans a virtual event that will allow runners to experience some of the race’s traditions and compare their times with others who take part.___The Georgia Bulldogs are planning to have some fans for their football games played between the hedges.The university announced ticket plans that call for allowing 20 to 25% capacity at 92,746-seat Sanford Stadium, where the field is surrounded by hedges. That would mean maximum crowds of between 18,500 and 23,000 for Georgia’s four home games in 2020. August 19, 2020 ___Wake Forest all-conference wide receiver Sage Surratt has opted out of the coming season to prepare for the NFL draft amid the coronavirus pandemic.Surratt announced his decision Wednesday on social media, citing “the many uncertainties and risks associated with COVID-19.” Surratt said he’s set to earn an economics degree in December, saying the school in Winston-Salem, North Carolina, has “forever transformed my life.”“My experience at Wake Forest has been extraordinary, and I leave with a humble and grateful heart,” Surratt said.The 6-foot-3, 215-pound redshirt junior made The Associated Press’ All-Atlantic Coast Conference first team last season after hauling in 66 catches for 1,001 yards and 11 touchdowns in nine games before going down with an injury. The 1,001 yards were the best for all power-conference receivers at the time of the injury, with four games of at least 150 yards last season. Surratt’s brother, Chazz, plays linebacker at North Carolina after starting his career as a quarterback and is also an NFL prospect.UNC team spokesman Jeremy Sharpe says in an email that Chazz Surratt’s status remains unchanged.___Appalachian State has paused football practices after reporting a coronavirus cluster involving the team.The school in Boone, North Carolina, says athletic director Doug Gillin has suspended practice “until further consultation warrants a change in status.” Associated Press The Latest: Army inks series with BYU The Bulldogs are offering single-game tickets in hopes of accommodating as many season ticket holders as possible for games against Auburn, Tennessee, Mississippi State and Vanderbilt.The school says those who choose not to attend games this fall will be eligible for a refund on all donations and season ticket purchases, while retaining their preferred status for 2021.Tickets will cost $150 per game.___Roma goalkeeper Antonio Mirante says he has the coronavirus but is currently asymptomatic. The 37-year-old Mirante says in a video on Instagram that he has tested positive for COVID-19 and is in isolation.He says “I feel well, I have no symptoms, neither a fever nor a cough.”The news comes a day after Roma announced that two of its youth team players had tested positive for the virus.___More AP sports: https://apnews.com/apf-sports and https://twitter.com/AP_Sports