Final Blog-Nihu Bhardwaj

After much thought and research, I believe that funding for amniocentesis should be provided to women, however, in certain conditions. For example, if the women is over a certain age, such as over 37, or has a genetic predisposition on either her side of the family or her significant other’s. I don’t believe that funding for amniocentesis or invasive genetic screenings should be provided to couples just because they want to see if their child is going to be “normal” or not. Looking through the lens of American, Japanese, and Israeli culture, I hope to show how this technology has both positive and negative consequences during pregnancy.

Tsipy Ivry’s Embodying Culturecompares how pregnancies are in Japan versus Israel. The Japanese have a very different approach to amniocentesis, as well as a lot of biomedical technology, from what is commonly seen in the Western world. This has a lot to do with their history on eugenics. The Japanese went through several periods in the twentieth century where they were restricted on the number of kids they could have or they were encouraged to have lots of children (Ivry 81). However, over the past couple of decades, they have now reached a problem where the majority of their population is older and there are less children being born. Hence, Japanese officials are encouraging couples to have more kids. One of the consequences of that was making abortion illegal. After abortion became illegal in 1996, the uses of biomedical technology, such as obstetrical ultrasound and amniocentesis, for the purpose of abortion greatly diminished. As Ivry describes there is “no clear guidance from the health ministry” (Ivry 105). She goes on and describes the guidelines that were issues by the health ministry in 1999, which stated that “an ob-gyn has no obligation to inform the patient of the existence of the triple marker” (Ivry 105). This differs significantly from the United States and Israel where the patients have to be informed of what the results are. Due to the Maternal Body Protection Law that came into place in the late 1990’s, as well as the desire to increase Japan’s population, the ministry and the medical insitutions simply had a “formal lack of enthusiasm to use it [genetic testing]” (Ivry 105).

The guidelines set by the government are also interpretive. For example, some institutions state that amniocentesis should be offered as a choice to patients above the age of 35. Whether that means all 35 year olds and older or individuals above the age of 35 seems to be up to discretion of the doctor. As Tsipy Ivry goes on to describe, it has a lot to do with the culture of pregnancy within Japan. Doctors are more reluctant to tell their patients about the test or its meaning. They also don’t want to add more stress towards the mother or the baby. In Japan, a meaningful bond between the mother and baby is created from the day that she knows she’s pregnant, through means such as writing in a notebook, talking to the baby, etc. Thus, for the mother to want to abort the baby due to genetic abnormalities, whom she considers as a full child and not a fetus, is a more stressful ordeal than it would be if this bond hadn’t been created. Additionally, the idea of statistics in amniocentesis, like “the 3:1000 chance of losing the child versus the 1:300 probability that the child would be born with Down’s” (Ivry 112) is inconvenient due to its lack of definitivity and a burden to the parents. If the parents decide to go forward with an amniocentesis and the result comes back negative, there is still a chance that their child could be born with a genetic or chromosomal abnormality. Thus, in Japan, amniocentesis is weighted more heavily, if undertaken, because of all the additional hospital visits, hospitalization time after amniocentesis, antibiotic prescriptions to avoid infection, as well as ultrasounds every few hours after the test (Ivry 120). This may be due to the change in culture after eugenics, the reluctance of the doctors to interfere in a natural process or the indecisive nature of statistics, but Japanese are less likely to use amniocentesis for checking abnormalities. Furthermore, Japanese women are more focused on other anxieties and pressures during pregnancy, like weight-gain, than they are on what the genetic outcome of their child will be (Ivry 172).

Ivry then showed us a look at Jewish Israel, where the use of biotechnologies for checking abnormalities in pregnancy are used more than they were in Japan. Couples that decide to undergo amniocentesis usually have to go to classes to understand the statistics, risks, and what the test results mean. However, as described by Ivry, the couple focuses less on the numbers and “important information” and more on the cultural implications, as well as the practicality of living with a child with Down’s, for example. Because of the liberty of these genetic tests in Israel, women are able to make a decision on whether or not they would be able to live with a child that has a genetic or chromosomal abnormality. There are many reasons for not wanting an unhealthy child: new life stability, the amount of care, fear, etc. Unlike the Japanese who stressed about weight and other allergies, the pregnant women in Israel focused and stressed a lot more on whether their child was going to be normal or not, due to this increased access to genetic screenings, such as amniocentesis. Additionally, amniocentesis in Israel doesn’t require all the medical institutional time, like it did in Japan. Instead, women “must sit in the waiting room following the same test before they are sent home” (Ivry 120). In general, more information is given to pregnant couples. How they interpret and use this information is influenced by doctors, family, friends and personal views. It is less about what diseases the child may have and more about how that child would fit into the couple’s current life story.

As described earlier about baby bonding in Japan, that is not a concept typically seen in Israel. Instead, “through birth, the fetus becomes a baby” (Ivry 216). This fundamental difference in when a fetus is thought to be a baby also significantly influences the use of invasive genetic screenings. As Ivry states, “such techniques of detachment…devised to defend women from threatening catastrophe…underpin the trivialization of pregnancy, as well as the enthusiastic embrace of PND” (Ivry 216). This can be seen through their everyday life. Most women who become pregnant in Israel continue to work until a week or so before their due. They don’t believe that they should be given any special treatment or start worrying about the child just because they are pregnant. This detachment of baby from body is contradictory to the Japanese women who leave their jobs as soon as their know their pregnant and prepare for the child. This cultural difference between Japan and Israel demonstrates the views of a two nations that have opposing views on genetic testing.

Compared to Japan and Israel, the United States is a melting pot of individuals. Because there is not one major ethnic group, the views and uses of genetic testing depends greatly on factors like SES, religion, physical and emotional environment. Rayna Rapp describes three different hospitals in three different parts of town in New York City to demonstrate this to us: Elite, Middle and City. The way information is presented, received and understood all depends on the women’s location, education, status, and so much more. For example, Rapp describes how genetic counselors would describe statistics to clients who don’t know how to handle numbers, aren’t scientifically educated but are attentive, or those who are scientifically sophisticated (Rapp 67-68). The importance of the genetic counselors and the influence they had on these patients was crucial, in comparison to what was seen in Japan and Israel, due to this difference in diversity. Because of this diversity, genetic counselors have to compensate by translating, using metaphors or phrases that mean something similar in that client’s language, simplifying numbers, etc. (Rapp 68). A problem that was encountered in City Hospital and some clients of the Middle Hospital, was obtaining a genetic record of the patients. For example, what was the cause of a family death? What was the medical name for a problem that a close family member had? (Rapp 74). Things like that which may not seem important to name for the patients, play a huge role for the counselors. However, due to the differences in culture, it was not important back home, so it shouldn’t matter here. Yet, when it comes time to potentially screening for these genetic tests, how does the counselor know if they should let the client undergo that risk or not? Another problem due to cultural difference was silence due to misinterpretation or not knowing what to say that the doctors would understand. As Rapp describes, medical etiquette could mean the doctor explains everything to the patient and they don’t need to explain everything; that is why they go to the doctor (Rapp 75). This change in medical environment where they have to exchange information that doesn’t seem relevant or that the patient doesn’t know, leads to problems.

These communication problems result in misconceptions and differences in light of “genetic and socially gendered contributions to a pregnancy’s health and well-being, and between medical and experiential understandings of what specific disabilities entail” (Rapp 79). Middle-class, educated (usually scientifically) couples have an easier time understanding what they are doing at the genetic counselors and what their future plan is for testing. However, the formality to which they understand what the testing is for and why they are undergoing it, usually decreases as SES and scientific education decreases. That doesn’t mean that they don’t understand what they are going through; it’s because of the complexity of their situation usually means that there are things that might be understood between both parties both not with 100% certainty that a middle-class, American-raised couple would have. Another problem, that was seen in both Israel and Japan, is the increased anxiety that mothers have if they need to undergo genetic testing or if they’ve already undergone it (Rapp 106). However, the women that Rapp interviewed that had undergone amniocentesis reported that they were very glad that they had undergone the test. Even though it did cause them a lot of anxiety, they said “it was better to know than not to know” (Rapp 116).

The concept of when one believes the fetus is a baby was important in the United States, as well. For some mothers, it only increased their anxiety for wanting to undergo amniocentesis, while for others it didn’t matter. As Rapp describes later on, “this anxiety invokes dread because it confronts the issue of ‘choice’; a diagnosed fetus is potentially an aborted fetus. And the fear of taking the responsibility for ending a desire pregnancy is substantial” (Rapp 128). All these beliefs of abortion, fetus-baby, along with the diversity already present, makes amniocentesis in America a much more complex and individualistic choice than in the previous cultural contexts. Like seen with some women in Israel, some pregnant women that Rapp interviewed also expressed how they’d be able to handle a disabled child, along with their current life. Some expressed how it was selfish of them to do so, how they couldn’t imagine daily life no matter how much they wanted a kid, how much their life would center on their child instead of themselves, and how they wouldn’t want to burden any siblings (Rapp 137-139).

After looking at amniocentesis in 3 different cultural settings, there were both arguments for and against having amniocentesis. In Japan, Tsipy Ivry showed us a world where genetic testing wasn’t the most important thing. There were other things to worry about in a pregnancy, such as weight, bonding with the baby, cultural allergies, etc. Israel, on the other hand, is a very pro-biomed technology country. Thus, it was no surprise that the government and the people were not against amniocentesis. It was a way to make sure that the pregnancy was a good one, that, considering personal circumstances, the couple would be able to make their own decision on whether they needed to know if they had a disabled child and if they would be able to handle that child. If not, they were able to make that decision. In the United States, a nation where biomedical technology is used greatly, it was a mix. Rayna Rapp helped show that due to a cultural diaspora, there were so many factors that genetic counselors had to consider when counseling their clients, while making sure that they didn’t sway their decisions based on personal (genetic counselor) views. These could be things like, how abortion or disabilities were handled in the client’s native country, current life, SES, religion, etc. Because of this, it was important for the genetic counselor to make sure they were giving the clients specific important information about genetic testing, like amniocentesis. However, the level to which they gave the clients the information and the level to which the clients actually understood the information varied, which is a problem. Lastly, the United States is not currently worrying about population growth, unlike the other two nations, so the choices made by couples were purely individualistic, in regards to genetic testing.

Through this range of views, I have chosen to advocate for a restricted amniocentesis; amniocentesis only in situations in which there is a known genetic predisposition on either side of the couple’s family or if the woman is above a certain age (that will be decided by a counsel). I believe that amniocentesis, as mentioned early on, should not be used as a tool in which couples can choose whether they want to have an “abnormal” child or not. While I do think that biomedical technology is great, especially for bringing a closer view of the child like sonograms, it also increases genetic selection, to an extent. By being able to choose what kind of child we think deserves to live in this world, based on our living conditions, lifestyle and morals, we are intentionally creating a normal vs abnormal child. Furthermore, because the United States is so diverse, there are unfair circumstances in pregnancy to women and their significant others that don’t understand the complexity of testing, like scientifically-educated, middle-class couples do. If there was a way to the communication and understanding portion of genetic testing/amniocentesis easier for both the counselor and the client, then it would be better and funding for amniocentesis could increase. However, because there is so much diversity and inequality in the medical institutions, it would be best to restrict amniocentesis. Finally, in a period that is already stressful enough, having these added, dangerous tests, like amniocentesis, puts even more pressure on the pregnant woman. During a time when they should be focusing on the well-being of themselves and the child, increasing stress and anxiety will only make it worse. Therefore, I believe, that we should become a little bit more like the Japanese that Tsipy Ivry described: less focused on genetic testing and more focused on oneself and the baby.

Citation:

Ivry, Tsipy. Embodying Culture : Pregnancy in Japan and Israel, Rutgers University Press, 2014. ProQuest Ebook Central

Rapp, Rayna. Testing Women, Testing the Fetus : The Social Impact of Amniocentesis in America, Routledge, 1999. ProQuest Ebook Central,

 

One Reply to “Final Blog-Nihu Bhardwaj”

  1. very interesting blog! I was not expecting you to take this position, and I guess I am still a little unclear as to what benefit is meant to be gained by restricting amnio? Is it the potential of harm to the fetus that concerns you, the cost, or something else? Spelling this out a little more clearly would help. Nevertheless, well done.

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