Invasive Genetic Screening: How Funding Allows Reproductive Advancement of Society and Innovation
The growing industry of medical technology has been promising for individuals in almost every part of the medical field, especially in the reproduction sector. I will be discussing specifically one type of reproductive technology, invasive screening procedures. As someone with a medical degree and a master’s in public health, I would like to share my increasing knowledge and experience with you all in order to give you important insight on the need for progression of this technology. Funding for screening along with prenatal diagnostic testing provides the parents with the best knowledge for them and the child, in addition to giving them options for further prenatal care. Not only will I persuade you all with concrete evidence provided from proven models, but I will also introduce the reasoning behind each model and the effects brought to benefit the people affected. The main arguments for funding of invasive genetic screening include the chance to prevent, the ability to prepare if something abnormal results, and the power of couples to be reassured with the option to know if their baby is healthy. These three arguments solidify why funding should be continued for prenatal and invasive testing.
Prevention constitutes a term that not many people know the true value of. To prevent is to take care of the problem before it exists, which is the problem itself for people. It’s easy to take prevention for granted because you carry on without knowing that what you’re doing might exacerbate the onset of the problem. When it comes to genetic testing, prevention is the central element of play. The probability for a certain disorder can occur in said pregnancy, so if there’s a chance to prevent it or ameliorate the situation, why not? If the mother and father have moral or religious grounds to keep the pregnancy going with negative results, it’s due to their way of thinking, so we can respect that, but raising awareness is key. Even if we can raise awareness in the end and prevent a small number of pregnancies in order to help not only the parents, but from fetal suffering, then the technology does justice. Technology allows us to do this.
As technology in medicine progresses at a rapid pace, it gives us the amazing capability to test for fetal diseases and abnormalities. Rayna Rapp, author of Testing Women, Testing the Fetus : The Social Impact of Amniocentesis in America, describes the invasive process of amniocentesis, which screens for genetic abnormalities of the fetus, and delves deep into the world of prenatal diagnostic testing. She describes the political support or condemnation of prenatal diagnoses as dependent on state legislators’ opinions on certain topics, while if we contrast America with European countries, they usually have established healthcare programs covering prenatal diagnostic services. (Rapp 43) Informed consent and continuing routinization of prenatal diagnostic testing is crucial because it can result in the outcome that parents didn’t ask for. For example, Rapp describes a wrongful birth case in which a 37-year-old woman received her child’s medical costs for life after “suing over not being given information about amniocentesis. Her case influenced the American College of Obstetricians and gynecologists and the American Academy of Pediatrics to advise their member doctors that the offer of prenatal diagnosis to medically appropriate candidates was now constituted as the standard of care, at risk of a lawsuit.” (Rapp 40) Rapp’s discussion of this historic outcome set the precedent for routinization of diagnostic testing because it proved that if the test were offered, it could have resulted in a different, beneficial outcome for the mother, whether that be preparation for or prevention of the pregnancy.
Along with a right to know, there’s also a right not to know. However, when the knowledge can benefit the parents and the child, it can be used to create a better future through preparation. Looking at models of other countries’ policies on prenatal diagnostic testing and screening, Tsipy Ivry, of Embodying Culture: Pregnancy in Japan and Israel, compares and contrasts Japanese and Israeli models on prenatal testing and screening. These two culturally different models on prenatal attitudes will portray the importance for the need of prenatal care.
The Japanese treat the mother and fetus as one unit and place emphasis on the maternal environment more than genetic factors, however their system for prenatal care is well-established into low-risk and high-risk factors. For example, “The guidelines of many institutions state that amniocentesis—known in Japan for its 1:300 rate of endangering the pregnancy—should be offered to patients above the age of thirty-five; in practice ob-gyns use a variety of age thresholds that do not always accord with the guidelines.” (Ivry 111) However, there is a nondirective conservation that most doctors have with their patients, and probability is not used enough in society as Dr. Tanaka argues “In Japan the concept of probability is underdeveloped. I think it is normal that people cannot associate these figures with themselves. For example, if you say that there is a probability of 1:300that the child will have Down syndrome, most people do not think that that has anything to do with them.” (Ivry 111) This statement helps us understand the need to raise awareness and prepare parents for the health of their future baby. Dr. Tanaka’s words showcase the international need to implement genetic testing. The need for understanding probability and pregnancy outcomes are crucial as age and medical pedigree can influence the baby’s health. As the average rate of women having children is increasing, so is the risk factor. Invasive genetic screening uses advanced technology to measure this probability and prepare the parents to make an educated decision. Ivry also examines prenatal care in Israel.
The Japanese prenatal care system contrasts with Israeli regulations, because in Israel, classes are held that explain the detailed procedure and concerns for those interested in amniocentesis. In addition, amniocentesis is state-subsidized for women who apply and meet the qualifications. An example of a woman Ivry interviewed, in all her three pregnancies she also made sure “to take a three-hour ride from her house to undergo intensive ultrasound screening at the clinic of a leading specialist and did not skip amniocentesis either. She told me about a friend of hers whose son had died ten months after being born with a metabolic disease that had not been diagnosed prior to birth. whose son had died ten months after being born with a metabolic disease that had not been diagnosed prior to birth.” (Ivry 224) From this example, we see that the outcome could have been different if the mother had gotten the genetic screening test. It could have diagnosed the metabolic disease which could have informed her of the effects and his lifespan. We can infer that Israelis emphasize the genetic environment rather than the maternal, and support, usually, the prenatal testing and screening as in the fertile culture of Jews lies a fear of medically worst-case scenarios and anxieties (Ivry 228), which leads them to prepare by using medically proven examinations.
The increasing standardization of pregnancy screening tests can be attributed to not only advancing technology, but also changing circumstances. In the beginning, “the technology of prenatal diagnosis was developed explicitly to allow the selective abortion of fetuses facing serious disabilities because of atypical chromosomes and genes” (Rapp 70). When one thinks of genetic screening, abortion might be the first option to come to mind. However, time and better understanding of these tests has made them evolve not for the sole purpose of abortion but as a tool of reassurance. A factor for women that increases the chances of chromosomal problems is age. Prenatal diagnostic tests such as amniocentesis makes screening for these problems possible. An important statistic to consider is the average age women are becoming mothers. In 1994, the average age was 23, now it is 26. This is due to a large number of older age women giving birth. A dramatic shift occurs in the age group of never married women aged 40-44, who in 1994, gave birth 31% on average, and now, the statistic has climbed to 55%. (Pew Research Center 2018) With the growing age of women giving birth, the need for prenatal diagnostic testing is also growing. In addition, hereditary diseases in a medical pedigree allow those concerned to have the knowledge that is available from getting genetic screening. As a medical doctor who sees pregnant women over a certain age, it is important to give the necessary precaution and advice to get tested for the health of the fetus. Increasing funding will aid the process of reassuring most women that their baby is healthy from knowing certain characteristics of the pregnancy.
One of these characteristics is probability of the child carrying a hereditary disease that the parents might have in their family. Rapp states “Consciousness is also shaped by a more capacious sense of family history, and the memories of kinship through which that his- tory is constructed. Some women and men have had extensive experiences with disabled children, and they told richly detailed stories of growing up with affected siblings or cousins. Others recounted skeletons hidden in the family closet.” (Rapp 150) An important consideration when emphasizing the need for invasive genetic screening to take into account that hereditary diseases are still being transmitted from generation to generation. Rapp precisely states how more and more people are being aware of this fact and getting tested for their probability of a certain familial disorder in the baby. Genes shape who we are and form a sense of kinship, but the capability, recently discovered, to confirm or deny a baby’s chance of acquiring a disorder exists now and should be used.
In a society that is improving daily with the fostering of medical care technologically and scientifically, genetic screening gives pregnancy a security. A security in knowing what the future holds, a reassurance in the health of the baby, and a chance for the parents to be prepared. Rapp says “The technologies of prenatal diagnosis, like all technologies, are produced at multiple intersections where the work of particular scientists, research clinicians, and health service providers engages social relations far beyond the purview of their laboratories, clinics, and consulting rooms. What come to count as the technologies of prenatal diagnosis, now and in the past, are shaped by large-scale transformations of biomedical knowledge, our legal structure, widely shared and sometimes contested cultural values, and the social identities within which service providers and patients encounter one another.” (Rapp 24) As society and its technologies advance, people are advancing with new knowledge and are better equipped for the future. Nevertheless, with all issues, moral, religious, and ethical concerns can arise, but while looking at models done in different countries, an evolution of opinion occurs based on many different factors. At the end, the decision is up to the parents to proceed with the screening, to terminate if the baby faces a serious disability, or to keep the baby as it is. However, in providing funding to this procedure, we are increasing the opportunities for pregnant mothers to get tested in the first place, to let them have a decision based on scientifically proven results, and to guide them with their pregnancy with assistance from medical and health-related professionals.
Ivry, Tsipy. Embodying Culture: Pregnancy in Japan and Israel. Rutgers Univ. Press, 2010.
Livingston, Gretchen. “They’re Waiting Longer, but U.S. Women Today More Likely to Have Children Than a Decade Ago.” Pew Research Center’s Social & Demographic Trends Project, 18 Jan. 2018, www.pewsocialtrends.org/2018/01/18/theyre-waiting-longer-but-u-s-women-today-more-likely-to-have-children-than-a-decade-ago/.
Rapp, Rayna. Testing Women, Testing the Fetus: the Social Impact of Amniocentesis in America. Routledge, 2000.
The Burden of Knowledge: Moral Dilemmas in Prenatal Testing. Dir. By Wendy Conquest, Bob Drake and Deni Elliott. Distributor: The Fanlight Collection, 1994. Docuseek2. Web. 24 Jun 2018.