Introduction:
I chose this project because of its individual ramification on my personal life. I’m a survivor of something called Amniotic Band Syndrome, which caused my disability in utero. I’ve lived with this disability my entire life. My mother discovered the possibility of a disability through a sonogram in the first trimester of her pregnancy but refused to abort. Her choice made it possible for me to be here today. The only disability I have is not having a right hand, minor when you think of all things that could have happened. I’m interested in how many people would abort a child based on the discovery of an in utereo disability. With the advancement of technology in the ultrasound field that allow an expecting mother to get a detailed photo of her child within the first trimester, this allows for in utereo disabilities to be seen much earlier and in much greater detail than ever before. While this allows for deficiencies in the uterus to be seen earlier enough to correct them it also forces the difficult decision of whether an expecting mother should carry her disabled child to full term and allow that child to be born into this world.
This issue connects with the broader issue of abortion rights and is a very temperamental subject to ask people. With the progress of eugenics it can be argued that doctors and others in the field are trying to prefect the human race. It’s said that “one of America’s cures for disability is death”, and this sparks the moral issue of aborting disabled fetus’ because they are not “perfect”, neglecting the interest of the fetus over the greater interest of society. Abortion, I think, is a woman’s choice and so it should be even if the child has a birth defect. The choice shouldn’t be left up to doctors or anyone else, but the parents for they are the ones who have to raise the child with their disability and teach them how to adapt. But the choice of the parent shouldn’t be based on what society thinks of as perfect but whether they can love the child in spite of their the way they were born.
Review of the Literature:
Prenatal testing has become a new phenomenon with pregnant women today given the many advancements in technology in the field of eugenics. It is now possible to get genetic tests for “nearly 700 inherited conditions” and of that seven hundred “344 are available on a clinical basis” and two hundred and eleven are given as prenatal tests (Singer 429). There are several types of prenatal testing done such as: the maternal serum alfafetoprotein (AFP) test and ultrasound, available to most women, which involves a noninvasive blood test that measures the levels of alfafetoprotein in the mother’s bloodstream. These tests identify those pregnancies at risk for delivering fetuses with Down’s Syndrome and spinal bifida. Chrorionic villus sampling and amniocentesis, are both forms of diagnostic testing that are more invasive but give more detailed information, but both also increase the likelihood of a miscarriage (Roberts 48).
There are several issues that this topic brings to light such as: insurability, how far will a genetic condition be considered a preexisting condition, privacy, and discrimination, will genetic disorders be another source of discrimination. The question now becomes who should be given access to such prenatal tests. In the past it has only been plausible for women with high risk pregnancies or pregnancies in which there is an advanced maternal age involved that have been given access to prenatal testing, but it is becoming a fast trend that all mothers are requesting the testing be done. A large part of the spreading of this trend is due to the media’s portrayal of prenatal testing.
One of the main reasons that prenatal testing was made the norm for mothers with advanced maternal age was because of the media’s portrayal of it as a necessity. This is embodied in the concept of “agenda setting” in which the media controls not what the public thinks but what they think about (Singer 430). The media tends to focus on technology when it is innovative and somewhat uncommon. Even between the years of 1988-1989 and 1994-1995 there was a significant shift in the media’s portrayal of the topic. In the first there was 52.6 percent of the coded articles contained prenatal testing while in the latter years only 13.2 percent contained the topic. The media portrayal of prenatal testing has decreased over the years since 1996 but the occurrence of mothers requesting the tests has drastically inclined. This is also partially because this recent generation of women have been given specific risk figures on older women having children which raises the awareness of the risk involved creating a need for testing (Tremain 47). Prenatal genetic testing is rapidly on the track to becoming a necessity for all pregnant women.
With the rise in prenatal testing also comes the debate of the abortion of an imperfect fetus upon the discovery of such an anomaly. The view of prenatal screening and that it is only “concerned with the detection, and, often the avoidance, of disability in utero” explains the significant decrease in the pervasiveness of infants born with disabilities (Roberts 48). The type of disability that most mothers across the board have said they would choose to abort are those that include some form of mental retardation. The two most pervasive disabilities are Down’s Syndrome and spinal bifida. Most mothers, 70.6%, when asked what kinds of serious defects warrant an abortion said Down’s syndrome or some other kind of mental retardation (Singer 435). In a study done by Glover and Glover in 1996 it was revealed that over 88% of women who have a confirmed prenatal diagnosis that they are carrying a child with Down’s Syndrome said they would abort (Roberts 49). There are even provisions in the abortion laws in some states that allow a fetus with Down’s Syndrome to be aborted much later in the pregnancy than a “normal child” based on “medical necessity” (Roberts 49). The decision to terminate a fetus with spinal bifida was 65.2 percent of the sixty-nine women interviewed (Roberts 52). Down’s syndrome is a chromosomal birth defect and in no way has anything to do with the socioeconomic status of the family involved. The way society view disabled people reflects on the choice a mother must make in the termination of her disabled fetus.
It is the misconception the public has about the lives of disabled people that allow for the more than slight inclination for mothers to abort disabled fetuses. Cohen noted in his 1986 study that it is the “supposed low quality of life” of the disabled that lead to the termination of the fetus (Roberts 50). The theory on “normal species-typical functioning” is the modern concept of normality that concentrates mainly on “functional ability” (Tremain 43) is what the field of bioethics is centered around and frankly the reason why society sees disability as an imperfection. It states that normal is common, abnormality is rare and that normal is the most successful implying that because a disabled person is not as successful as a normal person their quality of life is therefore less than a normal person (Tremain 41).
It is a proven fact that with the increase in education or even particular knowledge about the lives of disabled people parallels the increase in the mother’s choice in keeping a disabled fetus. Genetic counseling is supposed the provide the parents of a prenatally determined disabled fetus with all the information necessary for them to make an informed decision about whether to abort or not, but 91.3 percent of the women interviewed said they had not been encouraged to meet with a parent of a disabled child (Roberts 53). Education about disabilities is not also up to the parent as in The Story of Grace. This story is about a couple, pregnant with their fifth child, who refused prenatal testing. It was discovered through an ultrasound that her baby had small bones, curved femur bones, an odd shaped head, and kidneys, stomach and bladder which are abnormally sized, all symptoms of a lethal form of skeletal dysphasia. Despite pressure from several doctors, including the Director of Genetics, to abort the couple decided to carry the boy to full time even though the child would only live a few hours after delivery. But upon delivery the couple in fact had a completely healthy baby, proving the fallibility of the prenatal tests (Seyferth). Women are pressured by medical officials to abort their supposedly disabled fetuses without giving them the proper information so they can make the informed decision that will effect their entire lives all in the hope of ridding the world of impairment.
Methods:
I collected information off several academic databases that discuss other surveys completed within the same field and other articles that delve deeper into the parents choice of aborting a disabled fetus. My sampling plan for this term project is to go to a public area and distribute fifty of my questionnaires randomly to the public. My questionnaire will address the independent variables of race, age, religious affiliation, sex, socioeconomic status, sexual orientation, party affiliation, and presence of prior children within the home. I will distribute surveys the last week of March or the first week of April and have them completed by April 7. After the self-imposed deadline I will then begin to analyze the data obtained from the questionnaires and begin to add it into the database.
My hypotheses are just projections of what people within the respective independent variables will reply to my dependent research question. I think it will be more likely that people of a Caucasian background will abort a fetus with a disability. I think more people within the age range of thirty-five and older will choose to abort a disabled fetus over any other age group, for this is group that is more likely to have a child with the dreaded Down’s Syndrome. I think people with the religious affiliation of Non-Catholic, atheist, or agnostic will be more likely to abort. I think more women rather than men will choose to abort. People of a higher socioeconomic status, mostly middle class and above that can afford the expensive prenatal testing will not be as likely to abort as a lower income family, unable to care for a special needs child. Also it is my opinion that those people with a lower educational level, for whatever respected reason, will choose abortion more often over those more educated due to the higher knowledge available dealing with the quality of life and special needs of a child born with a disability.
Works Cited
Neasham, David, Helen Dolk, Martine Vrijheid, Tina Jensen, and Nicky Best. “Stillbirth and Neonatal Mortality Due to Congentital Anomalies: Temporal Trends and Variation by Smalle Area Deprivation Scores in England and Wales, 1986-1996.” Paediatric and Perinatal Epidemiology 15 (2001): 364-373. Proquest. EBSCO. Gramley Library, Winston-Salem. 1 Mar. 2008. Keyword: birth defects and abortion.
Roberts, Christy D., Laura M. Stough, and Linda H. Parrish. The Role of Genetic Counseling in the Elective Termination of Pregnancies Involving Fetuses with Disabilities.” The Journal of Special Education 36.1 (2002): 48-55. Proquest.
EDSCO. Gramley Library, Winston-Salem. 3 Mar. 2008.
Seyferth, Sandi. “The Story of Grace.” Human Life Rewiew (2006): 35-40. Proquest. EBSCO. Gramley Library, Winston-Salem. 5 Mar. 2008.
Singer, Eleanor, Amy D. Corning, and Toni Antonucci. Attitudes Toward Genetic Testing and Fetal Diagnosis, 1990-1996.” Journal of Health and Social Behavior 40.4 (1999): 429-445. Proquest. EBSCO. Gramley Library, Winston-Salem.
Tremain, Shelley. “Reproudctive Freedom, Self Regulation, and the Government of Impairment in Utero.” Hypatia 21.1 (2006): 34-53. Project Muse. EBSCO. Gramley Library, Winston-Salem. 1 Mar. 2008. Keyword: abortion birth defects.
