Paper Summary:

This paper discusses fragile X syndrome, the specific collection of often quite diverse physical, behavioral and mental afflictions that are caused by a specific gene change. The paper discusses the range of symptoms and concerns regarding the transmission of the syndrome as well as the controversy over attempting to identify carriers of the syndrome.

From the Paper:

"Medical ethicists like Dorothy Nelkin oppose such programs, even with the parent's consent, arguing that the school system should treat the symptoms of the syndrome, if it is present--in short, an autistic-like Fragile X sufferer should be treated in the same method as a child with autism with another cause, just as a Fragile X sufferer experiencing difficulty reading should receive resource room help. The argument is that because the level of impairment is so varied, a relatively mildly impaired child could be unfairly tarnished with the label of hopelessly unable to learn because of a genetic defect. Of course, the issue of genetic testing is, invariably a thorny one, as is the danger of identifying a child with a mild case as 'marked' may do more harm than good, and stigmatize him or her for life. Nelkin even argues that there is a danger that "a false diagnosis of Fragile-X could stigmatize a child as potentially disabled" wrongfully (Nelkin 1996: 540). However, there is no denying that this disease is genetic, and an unidentified individual could pass on the trait to his or her offspring."

Sample of Sources Used:

• Abrams, Liane. (2008). "What Does It Mean To Be a Carrier?" National Fragile X Foundation. Retrieved 19 Jan 2008 at http://www.fragilex.org/html/carriers.htm
• "Summary of Fragile X Syndrome." (2008). National Fragile X Foundation. Retrieved 19 Jan 2008 at http://www.fragilex.org/html/summary.htm
• Nelkin, Dorothy. (Dec., 1996), "The Social Dynamics of Genetic Testing: The Case of Fragile-X Medical Anthropology Quarterly, New Series. 10. 4.: 537-550. Stable URL: http://links.jstor.org/sici?sici=0745- 5194%28199612%292%3A10%3A4%3C537%3ATSDOGT%3E2.0.CO%3B2-R
• Hertz-Picciotto, Irva, Lisa A. Croen, Robin Hansen, Carrie R. Jones, Judy van de Water & Isaac N. Pessah. (Jul 2006). "Children's Health The CHARGE Study: An Epidemiologic Investigation of Genetic and Environmental Factors Contributing to Autism. Environmental Health Perspectives. 114.7: 1119-1125. Stable URL:http://links.jstor.org/sici?sici=0091-6765%28200607%29114%3A7%3C1119%3ATCSAEI%3E2.0.CO%3B2-D
• "What is Fragile X?" (2008). National Fragile X Foundation. Retrieved 19 Jan 2008 at http://www.fragilex.org/html/what.htm

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