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Two Views of Neural Tube Defects Genetic tests enable people to make reproductive choices that can alter allele frequencies in populations. identifying carriers of

 

Two Views of Neural Tube Defects Genetic tests enable people to make reproductive choices that can alter allele frequencies in populations. identifying carriers of a recessive illness, who then may decide not to have children together, is one way to remove disease-causing alleles from a population. Screening pregnant women for fetal anomalies, then terminating affected pregnancies, also alters disease prevalence and, if the disorder has a genetic component, allele frequencies. This is the case for neural tube defects (NTDS), which are multifactorial. An NTD forms at the end of the first month, when the embryo's neural tube does not completely close. An opening in the head (anencephaly) usually ends in miscarriage, stillbirth, or a newborn who dies within days. An opening in the spinal cord (spina bifida) causes paralysis but the person can live into adulthood and have normal intelligence. Surgery can help to preserve functions. Many people informed that their fetus has a neural tube defect end the pregnancy. Blaine Deatherage-Newsom has a different view of population screening for NTDS because he has one. Blaine was born in 1979 with spina bifida. Paralyzed from the armpits down, he has endured much physical pain, but he has also achieved a great deal. While in high school, he put the question, "If we had the technology to eliminate disabilities from the population, would that be good public policy?" on the Internet-initiating a global discussion. He wrote: I was born with spina bifida and hydrocephalus, I hear that when parents have a test and find out that their unborn child has spina bifida, in more than 95 percent of the cases they choose to have an abortion. I also went to an exhibit at the Oregon Museum of Science and Industry several years ago where the exhibit described a child born with spina bifida and hydrocephalus, and...asked people to vote on whether the child should live or die. I voted that the child should live, but when I voted, the child was losing by quite a few votes. When these things happen, I get worried. I wonder if people are saying that they think the world would be a better place without me. I wonder if people just think the lives of people with disabilities are so full of misery and suffering that they think we would be better off dead. It's true that my life has suffering (especially when I'm having one of my 11 surgeries so far), but most of the time I am very happy and I like my life very much. My mom says she can't imagine the world without me, and she is convinced that everyone who has a chance to know me thinks that the world is a far better place because I'm in it. Today Blaine works for a not-for-profit organization that refurbishes computer equipment for community service organizations. Excerpt by Blaine Deatherage-Newsom, "if we could eliminate disabilities from the population, should we? Results of a survey on the Internet." Reprinted by permission 2. People with certain medical conditions or limitations, such as those with hearing loss, object to genetic tests that would ultimately decrease their numbers in the population. How would you feel if you had such a condition?

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