The United States government should require and pay for extensive prenatal screening for pregnant women in this country. The U.S. is the only developed country in the world without a social insurance or statutory system to cover basic expenses for medical services for most or all of its population. This is especially problematic for low-income or high-risk individuals who are still able to work but who are self-employed, work part-time, or work for small businesses, and who may not be able to afford or obtain health insurance. Even for those who have health insurance, coverage for most preventive, screening, and counseling services, insurance companies sometimes exclude these items. Therefore, these limitations of U.S. healthcare coverage particularly affect genetics services, which have an important counseling component. Insurance reimbursement or other financing for genetic diagnosis, testing, screening, and essential genetic counseling is not generally available now in the United States. According to the United States Census Bureau’s website, in 2003 more than 45 million people were without health insurance coverage in the United States. The cost of government sponsored prescreening and the prevention of children being born with birth defects outweighs the costs of supporting the severely handicapped or learning impaired.
Although the United States ranks as one of the lowest in infant mortality rates in the last few years, the elimination of birth defects should be the number one concern of this nation. According to the Population Reference Bureau’s website, the United States averages about seven infant deaths to every one thousand children born. In comparison to less developed countries, the United States has a relatively low infant mortality rate (IMR). However, there are other more compelling reasons why prenatal screening is a necessary enterprise prior to a child being born in this country. Approximately 150,000 children are born with birth defects in the United States every year. About 3% of children born in the United States have a major malformation. The estimated annual cost to care for these children is approximately $1.4 billion (PCRM, Birth Defects)
The question of prenatal testing seems pretty commonplace in today’s society. However, in most cases prenatal screenings consist of very simple and noninvasive tests. Having an ultrasound test during the first trimester of pregnancy is a question usually left up to the parents, if they want to know the sex of the child. Another reason the expecting parents would want to be tested is to confirm the health of their child (Mayo Clinic). The expecting parents or their health insurance agencies currently pay for the costs of these tests.
Prenatal screening can consist of several different types of tests. The usual test for women under 35 is the ultrasound. Using sound waves to capture an image of the fetus in the mother’s womb, Doctors use this test to evaluate the fetus for normal development and gestational age. For women older than 35, or who have had a previous child with a birth defect, doctors usually recommend the amniocentesis test. This test is more invasive and carries a risk of complicating or accidentally terminating the pregnancy. During amniocentesis, “samples of amniotic fluids are removed using a needle and then tested for genetic abnormalities in the laboratory” (Mayo Clinic). Obstetricians use this process to test for genetic birth defects, chromosomal abnormalities, and certain other types of defects. The third most common type of screening is called Chorionic Villus Sampling (CVS). Doctors usually perform this test in the first 10–12 weeks of pregnancy. The CVS test consists of taking samples of the cells that line the placenta. Scientists call these cells, Chorionic Villus, and they test these cells in a laboratory for genetic anomalies such a Down syndrome.
According to the Mayo Clinic’s website, over 95% of children born in the United States today are born with no apparent health defects. If one’s child falls into the unfortunate 5% with health defects, then the parents are better able to prepare if they know that hardships lay ahead. The most common types of birth defects are neural tube defects and Down syndrome. Named for Langdon Down, the English physician who recognized the traits associated with this birth defect, Down syndrome affects about one in every six to seven hundred births. These children usually have other serious health problems as well, such as heart conditions or kidney problems (McCall Smith, 52). The cause of a Down syndrome child is the presence of an additional Trisomy 21 chromosome. Mary Cooper, in her CQ Researcher article states that, “35,000 people in the United States have Down Syndrome, the most common cause of genetic mental retardation.” Other birth defects include neural tube, anencephaly, and spina bifida. Anencephaly is the fatal congenital brain condition where the child is born missing part or all of his brain. Spina bifida is the condition where the child is born with the spinal cord and its membranes exposed. Any child born with a birth defect is a tragedy. As a society, and from a governmental point of view, our children who are born healthy cost less to support as they grow into adulthood. This is one reason why it would be benefit the United States government to pay for prenatal testing.
Birth defects are not the only reason prenatal screening should take place. With prenatal testing doctors could identify some of the more subtle and longer-term issues. One possible area of testing that could be done in the future is for autism. Director Steven Hyman of the National Institute for Mental Health (NIMH) states that, “The condition [autism] was once thought to be caused by maternal rejection. But in recent years, biologists have zeroed in on a gene that codes for a protein that reabsorbs serotonin into the nerve cell after it has been released” (Bettelheim, Biology). Furthermore, Hyman states that, “NIMH is in the midst of a five-year, $27-million research effort to explore a shorter-than-normal strand of DNA believed to play a significant role in the disorder” (Bettelheim, Biology). Currently, due to the cost factor, Doctors tend to order only certain tests on pregnant women. They base the need for these tests on either the age or the race of the parents. For example, depending on certain factors, doctors will recommend testing for the genetic birth defect sickle cell anemia in black couples. Amniocentesis is a test that older women are requested to undergo.
One would think that having all the available information would be a valuable asset to an expectant family and to society as well. For instance, if genetic testing could possibly determine whether a child was predisposed to autism, ADHD, alcoholism, or drug addiction, the benefit cost savings to society would be in the area of $5.8 billion a year in providing special education for these children (Bettelheim, Embryo Research). Unfortunately, having this information does not necessarily mean the family will consider it. The ability to cure all genetic defects is still not in the grasp of today’s technology. In some cases such as Down syndrome, or several of the neural tube defects, the only way to prevent such a birth is termination of the pregnancy. Depending on the values held by the family, the ethical question of abortion may go either way. The Pro Choice end of the debate does not necessarily recommend abortion, however it is their stance that the decision to carry the child to term or not must be left up to the woman. The inevitable question is how serious must a birth defect be before a woman decides that the child may not be perfect enough. Would a cleft lip be grounds for terminating a pregnancy? On the other end of the moral spectrum is the Pro Life movement, whose stance is that every fetus deserves the right to have a life, no matter what sort of hardship the child or society must bear.
In cases where the birth defect is not so devastating to the family or to society, the possibility of gene therapy presents itself. According to the Human Genome Project website, in 2003 the project identified the 20–25,000 genes that make up the human DNA structure. For the past several years, and many more to come, scientists will be analyzing the data. The analysis that these scientists are carrying out is quite exciting. On May 8, 2000, the Human Genome Project reported that they had decoded the Trisomy 21 chromosome responsible for Down syndrome. For a family in a situation such as this, gene therapy may provide some answers. Dr. Alan Goldhammer, director of technical affairs for the Biotechnology Industry Organization, says in his testimony to the House of Representatives Committee of Science, “The ultimate technology for a genetic disease is gene therapy, where researchers – and eventually physicians – actually substitute a non-defective gene for the defective gene” (Goldhammer, Sect 2). This news is like a light at the end of a tunnel for families who may be expecting a child with a birth defect or a particular undesired trait.
The next step, people may say, is the genetic engineering of human beings. As we stand on the edge of this new frontier, the possibilities of perfect children are considerable. There are two sides to this coin: on one side, genetic engineering promises us a way to control or eliminate various illnesses and birth defects; on the other side, we could be able to determine the characteristics of the offspring, either as individuals or as future reproducers of the species. Genetic engineering comes in two forms. Somatic cell is one form of line engineering, also known as gene therapy. This type of gene therapy is used to deal with the defect of the individual and will not be passed on to future generations. The other form of genetic engineering, Germ line modification, is a bit more sweeping. Germ line modification involves intervening with the genome of the person to alter the person’s genetic character at a deeper level. This particular form of engineering will be passed on to future generations (McCall Smith, 61).
There are many positive reasons why the government should sponsor genetic testing in all of our expectant mothers. However, there may be only few reasons that society may oppose genetic testing of pregnant woman on a large scale. One of these fears is the thought of genetic enhancement. A look into the future may bring us a genetically enhanced species or even a master race of humans. This scares us because of the implications concerning genetic discrimination, eugenics, etc. At the moment, we cannot engage in genetic enhancements of future individuals. Humanity’s technology has not caught up to his imagination. The future is safe for now.
Another reason that society might resist wide scale testing of expectant mothers is a question of ethics. Although we usually consider this knowledge empowering, in this case knowledge may be a hindrance. Take, for example, a family, which for religious reasons may not want to know about any defects that their unborn child may have. Perhaps their religious values preclude them from tampering with the fetus in any way. In this case, having this knowledge beforehand may end up being a hopeless fact. Another possible question that society may have is whether science is taking the surprises out of life.
However, the most compelling question that society must answer as it moves into this brave new world is who really needs to know about the outcome of tests on these unborn children? Obviously, the parents have a right to know if they choose to do so. Does the government have the right, or the need, to know this person’s genetic history? The real issue is if the government is paying for the tests, should they not have some right to the information? How would the government use this information? Do insurance companies need this information to make better business decisions? Is it possible that a person’s genetic history will be the basis for not receiving certain health benefits? As children grow into adulthood and are searching for a career for themselves, will their future employer have access to an individual’s genetic data? We need to answer questions like these so that an individual’s genetic information is not a basis for discrimination in the workplace or for insurance coverage.
Questions of genetic privacy are important in the wake of genetic testing. As government sponsored genetic testing proceeds on a wide scale in this country, the genetic privacy of the individual becomes paramount. The United States government is already taking steps to protect genetic information from being used in a negative manner. The 109th Congress has proposed Senate Bill 309, also known as “Genetic Information Nondiscrimination Act of 2005.” This bill clearly defines that it is unlawful to discriminate in the areas of health insurance and in employment opportunities (Genetic Discrimination Act).
Lastly, does the child have the right to know of his or her genetic “corrections”? Perhaps this information may be too much of an emotional burden for that person. Or, on a more positive view, perhaps this type of information could be used to the child’s advantage. Having one’s genetic information on hand, perhaps imprinted on your calling card, could open up opportunities for a better mate or a better job. A person’s genetic calling card would act like a pedigree of sorts.
In any discussions of genetic testing, or genetic research, a more ominous dark figure is looming. In this case, the specter of eugenics raises its ugly head. From the Greek, eugenic means literally “well born.” Sir Francis Galton in 1883, a statistician, and contemporary and cousin of Charles Darwin, coined the term. Galton was a pioneer in many subjects ranging from statistics and meteorology to fingerprinting. The one subject that became his passion was eugenics. Eugenics is essentially a form of hereditary improvement through selective breeding. People of this era based this pseudo-science on statistical data that he applied to heredity. As the nineteenth century ended, the eugenics movement gained momentum, and shifted across the ocean to the United States. To illustrate, with Mexico to the south, a mass influx of immigrants from Europe, and the United States still healing from the racial implications of the Civil War, the U.S. was ready for eugenics (Black, 16).
The opening of the twentieth century in the United States saw new possibilities in this new science of eugenics. The white social class used eugenics as the basis of enacting sterilization laws throughout the nation. The government used these laws to round up those considered feebleminded and undesirable. Under the guise of improving one’s health, they rendered these individuals sterile. One example is Mary Donald, a child of poverty, who remembers the day the doctors, told her that she needed an operation for her health: “Well if it is for my health then I guess I will go through with it” (Black, 6). Mary’s only real crime was that she was poor and uneducated. Eugenicists devised many tests at this time to weed out the “feebleminded” or undesirable. Two of these tests are still in use today, however the intent of the tests is no longer sinister. The first is the Intelligence Quotient test, or the IQ test, which evolved from the Stanford-Binet test. By dividing mental age by the chronological age of the person being tested, and then multiplying by 100, a ratio or quotient is reached. The other test is the Scholastic Aptitude Test or SAT. While colleges use this test as an entrance exam, but the questions were based on cultural or social class rather than pure academic ability. The tests, at this time, were used to discriminate against a social class rather than for intellect: “Poor scoring southern Italian immigrants would not have known who the latest Broadway stars were or which brands of flour were popular” (Black, 83).
Germany in the 1930s became a hotbed of racism based on eugenics. Hitler’s National Socialist party targeted the Jewish race and Eastern Europeans as the downfall of German society. For over 15 years, the Nazis persecuted and murdered under the banner of eugenics. Although most people today find racism distasteful and offensive, it still lives on in the United States. Today in America, the Aryan Nation’s website, http://www.aryan-nations.org, spreads its hate electronically.
Despite eugenics and racism’s ties to genetic research, the United States public is still interested in the subject of genetics. In the last 20 years, Americans have popularized in books, television, and films, the subject of genetic testing and genetic engineering. Books like Brave New World, in which Aldous Huxley describes a world where they genetically breed people for a specific purpose. Or in Gattaca, the 1997 film that depicts Vincent, a man who was born naturally, as we are now, rather than being a product of advanced genetic technology. Born in a world where most birth defects have been eliminated, Vincent is discriminated against in his choice of profession. Movies like this highlight the negative side of pursuing the eugenic ideal. In 2000, novelist Nancy Parker wrote her second technological thriller, Double Helix. Double Helix interweaves many facts about genetic engineering with a suspenseful plot. Nancy Parker describes how genetic research has found a way of repairing the ends of chromosomes, called telomeres, thus extending human life. This is remarkably like a real life Californian company called Genron (Bettelheim, Embryo Research), who carry out experiments in this area. In each of these stories, the chance of bettering the human condition is offset by the darker side of human nature. If humankind can learn to regulate itself, genetic testing has wonderful possibilities that the United States government, or the world, could implement.
Lastly, genetic testing has many upsides as well as some downsides. If the genetic testing of pregnant women were implemented on a grand scale, the United States would reap many benefits for its citizens, and for the government itself. Our society would see a decrease in children born with heartbreaking birth defects. As genetic research continues, prenatal testing would serve in early detection for individuals prone to criminal behavior such as drug abuse and violence, and learning disabilities such as autism. Testing would extend not only to those who could afford it, but also to those who cannot. Now that mapping the human genome is complete and research is taking place in both the private and public sector, advances in gene therapy and genetic engineering are just around the corner. As we stand on the frontier of genetic engineering, society must answer many ethical questions. However, as one evaluates the evidence of genetic testing of our unborn children the upside definitely outweighs the downside. Government sponsored genetic testing on a nationwide scale must prevail.
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Goldhammer, Alan. “Testimony of Alan Goldhammer, Ph.D., Director of Technical Affairs Biotechnology Industry Organization (BIO) Submitted to the Subcommittee on Technology of the House of Representatives Committee on Science.” United States House of Representatives. September 17 1996. U.S. 109th Congress. January 18 2006. <http://www.house.gov/science/alan_goldhammer.htm>
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McCall Smith, Alexander. Altering the Blueprint: The Ethics of Genetics. New York: Barnes & Noble. 2004. 51–65.
Parker, Nancy. Double Helix. Ashland: Ashland Hills Press. 2000.
“Prenatal testing: What’s involved and who should consider it?” MayoClinic.com. June 28, 2004. Mayo Foundation for Medical Education and Research.
United States. Cong. Senate. 109th Congress, 1st Session. S.306, Genetic Information Nondiscrimination Act of 2005. 109th Congress. 2005. Washington: GPO Access. 2005. <http://rpc.senate.gov/_files/L2GeneticNondisDBJS021605.pdf>
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