Ethical Implications Of Mandatory Genetic Testing For Autism Spectrum Disorders

The research proposal will be submitted for approval to Douglas College Research Ethics Board. The completed application is included in Appendix 1. Since the research involves young children who are deemed a vulnerable population, written consent will be obtained from their parents or legal guardians hereinafter referred to as “representatives”. The representatives will consent for usage of the participants’ medical records by the researchers. In particular, the researchers will screen the participants’ medical records for the information pertaining MMR vaccination and ASD diagnosis. The researchers will inform the representatives that the purpose of the research is is to determine the correlation between autism

Autism Spectrum Disorder is a growing problem throughout the entire globe. Autism Spectrum Disorder is defined as deficits in social reciprocity and communication, as well as unusual, restricted and repetitive behaviors (Lord). Such behaviors may include running back and forth, excessive cleaning, noises, and clapping. These also vary greatly with age and ability, and the notion of ASD has been introduced to recognize these diversities (Firth). Autism was first discovered in 1943 when Leo Kanner observed 11 children with several common traits such as, impairments in social interaction, anguish for changes, good memory, belated echolalia, over sensitivity to certain stimuli (especially sound), food problems, limitations in spontaneous activity,

We are living in a time where a remarkable and advanced medical treatments exist. However, scientists and medical professionals are constantly faced with diseases and disorders that contemporary humanity needs a cure and treatment. Amongst the disorders that affecting our young people today is the autism spectrum disorder. It is a “complex and life long behavioral disorder marked by impairment in social and communicative abilities”(Evans, et al., 2008). People living with autism range from those with high IQ’s to those with intellectual retardadtion.

Autism spectrum disorders are a class of developmental disorders that impair social skills, behavior, and communication (Center for Disease Control). ASDs are considered ‘spectrum’ disorders because each patient has a unique experience in the nature and severity of their symptoms (Center for Disease Control). Under the umbrella of ASDs, there are three types of disorders, including Autistic disorder, Asperger Syndrome, and Pervasive Developmental Disorder Not Otherwise Specified (Center for Disease Control). Autistic disorder is the most severe of the three, and patients exhibit significant problems with language, communication, and behavior (Center for Disease Control). Furthermore, people with Autistic disorder often have some intellectual impairment (Center for Disease Control). Asperger Syndrome is a milder form of autistic disorder where patients have some developmental delays, but their language and intellect are not affected (Center for Disease Control). The mildest of the ASDs is the pervasive developmental disorder. These patients usually don’t meet all of the criteria for autistic disorder, but do show some signs of social and communication problems (Center for Disease Control). The number of children diagnosed with ASD is growing, and currently 1 in 88 children fall somewhere on the spectrum (Mari-Bauset et al., 2013). Boys are four times more likely than girls to have autism, and while the exact cause of these disorders is unknown, both genetic and

A significant increase in the prevalence of autism spectrum disorders (ASDs) has been observed over the past decade. Specifically, the prevalence has increased from 1 in 110 children to 1 in 88. The 2011 Interagency Autism Coordinating Committee (IACC) described the increase in prevalence of ASDs as a national medical emergency. To address this emergency, the IACC developed a strategic plan. Successful implementation of the plan could improve the quality of life of children with ASDs and their families. Evaluation of cost-effectiveness of evidence-based services is one of the long-term objectives in the IACC strategic plan, and this proposal addresses it. According to PA-10-159 entitled Research on Autism and Autism Spectrum Disorders (R03),

Screening tools used by these professionals would support early recognition and referral of children with questionable development. Therefore, when nurses carry out routine well-child visits, they should consider a critical opportunity to obtain developmental information which help in the identification of children with developmental delays such as autism. These children, if treated as early as possible with the best interventions available, will have a better life with academic achievement, higher IQ, better job opportunities, decrease criminal history, etc. Furthermore, nurses are educators and have the responsibility in helping parents to understand the developmental milestones and inform them of the available community resources to support families with an autistic child. Education is important because parents have the responsibility to help and teach their child affected by Autism Spectrum Disorders

Autism has become an increasingly important public health concern as the number of yearly diagnoses of the disorder has increased since the late 20th century. The National Institute of Health estimates that 1 in 88 children in the United States are classified as having an Autism Spectrum Disorder (ASD) (NINDS, 2009), a genetic neurodevelopmental disorder that impairs children 's ability to learn and causes issues with social interaction and communication. Symptoms of ASD include delays in speech and language, issues with social interaction, and unusual behaviors/routines.

Over the years, more people are becoming aware of Autism Spectrum Disorder, ASD. The growing number of individuals who are affected by ASD have been increasing over the years. This could be do to the new DSM development of what is considered ASD or simply more children are being born with ASD. Either way, ASD is more predominate in our society today. ASD is defined in the DSM 5 as having abnormal social aspects, lack of social skills, non-verbal communications skills, deficits in development, lack of understanding of relationships, and self-stimulation through repetitive behaviors (American Psychiatric Association, 2013). Although these are not all of the symptoms caused by ASD

In the past two decades or so, autism has changed from being a condition nobody had even heard about to widely recognized mental health condition. Due to widespread use of internet, social media and smartphones everybody knows something about autism. Just searching for autism in Google brings up more than 68 million results. Autism has become a matter of passionate national debate among different stake holders such as government, public health agencies, mental health associations, non-profit organizations, parents of autistic people and public in general. After the Affordable Care Act was signed into a law in 2010, there has been a renewed interest in autism with different groups wanting to include mandatory coverage for autism in the health insurance plans. The Affordable Care Act provides health care services to more Americans and access to preventive services at no additional cost which includes screening for autism for children at ages 18 and 24 months. After the Affordable Care Act, health insurance companies/plans cannot limit or deny coverage to anyone due to any pre-existing health conditions. 1

Every year one in 68 Americans is diagnosed with autism. There are more than 3.5 million Americans living with an autism spectrum disorder (Autism Society), which makes it the fastest growing developmental disorder in the United States, hence the significant amount of studies being done to explore its characteristics and find solutions. Autism, also known as ASD, is a complex neurodevelopmental disorder that is categorized by dysfunctions in social situations, communications, constrained interests, and repetitive stereotypic behaviors (Siniscalco et al). These behaviors can range from mild to very severe, and may be accompanied with other disorders. Autism can be diagnosed during early childhood, while symptoms begin to show during the first

In the United States, the Center for Disease Control and Prevention reports that between 1 in 80 and 1 in 240, for an average of 1 in 110 children have an autism spectrum disorder, “ASD” (Nirv, Shah 2011). According to the National Institute of Neurological Disorders and Stroke, up to six out of every 1,000 children may be diagnosed with some form of autism. In addition, boys are four times more likely than girls to have autism. This means that as many as 1.5 million Americans today are believed to have some form of autism. Unfortunately, the numbers appear to be increasing rapidly. Autism is a disability that frequently appears during the first three years of life. It is the result of a neurological disorder that affects the

Currently, autism is usually diagnosed by a series of questionnaires, observations, information from parents, carers, or relatives, since there is no medical test for autism currently available, however, there are some new methods being researched that are shown to be quite effective at detecting autism in infants from 14 months old, such as “eye gaze tracking”3. There are also various studies on genetic tests for autism, as some individuals with autism have genetic “risk factors” that can be screened

Over the past twenty years, researchers on Autism have made notable findings in comprehending prevalence rates and creating accurate assessments to gather current diagnostic criterion. A significant increase in the prevalence rate of ASD has led researchers to make further inquiries about the precision of the tests used to assist in the diagnosis of autism.

Diagnoses of autism have increased rapidly over the last ten years, and continue to do so, making affordable and effective treatment for the developmental disorder crucial. Statistics report that “about 1% of the world is on the Autism Spectrum; prevalence in the US is about 1/68 births, prevalence

Tens of millions of people have been diagnosed with Autism worldwide, effecting both genders, all races, ethnicities and people from all socioeconomic classes. In 2010 a Surveillance Summary was conducted in the United States, where it identified that one in 68 children are diagnosed with Autism (Centers for Disease Control and Prevention, 2014). It has been recognised