Skyllar Kuppinger
Down syndrome, a chromosomal abnormality in which there is an extra copy of chromosome 21 in the human genome, is the most common cause of intellectual disability (CDC [date unknown]). Other effects of Down syndrome, or DS, include facial abnormalities, hearing loss, heart defects, and eye disease. However, many people with DS do not experience any medical abnormalities aside from their distinct facial appearance(CDC [date unknown]). In most countries, non-invasive prenatal screening tests are available to determine the likelihood of the baby being born with DS (Ackerman et al. 2012). As a result, the rates of DS in many countries have declined. The United States has an estimated termination rate for DS of 67% (Ackerman et al. 2012). In Iceland, the termination rate is nearly 100%. In fact, an average of only two babies with DS are born per year, out of a population of 356,991 (Lajka and Quinones 2017). As predicted, the termination of DS pregnancies has sparked great controversy, with strong arguments on both sides of the debate.
Critics claim that the declining rate of DS is indicative of eugenics or even genocide. Many argue that deciding to terminate a fetus with DS implies that people with DS are less human. They point to the fact that in the past, people with DS were institutionalized, isolated, and denied education (Lajka and Quinones 2017). Considering DS as a valid reason for abortion can be viewed as a step backward with respect to the progress that has been made towards equality for people with DS and other disabilities. Furthermore, people with DS are able to live happy and healthy lives. In a 2011 study by Goldstein et al., nearly 99% of people with DS stated that they were happy with their lives. Ninety seven percent said that they liked who they are, and 96% said they liked how they look. Almost 99% reported that they felt love for their families and friends. The study also included a qualitative analysis in which people with DS encouraged others, especially health care professionals and prospective parents, to realize that people with DS have their own dreams and fulfilling lives. What’s more, a separate study by Goldstein et al. found that 99% of parents loved their son/daughter with DS and were proud of him/her (2011). Conversely, 4% of the participants indicated that they regretted going through with their pregnancies. In general, the overwhelming positivity found in both studies supports the idea that terminating a DS pregnancy is unethical.
Additionally, some individuals, such as Eric Scheidler, the executive director of Pro-Life Action League, believe that prospective parents are being pressured to choose abortion (Lajka and Quinones 2017). He states that simply being offered genetic testing adds bias. Scheidler insists that prenatal genetic testing should be used solely to prepare the family for potential health issues of the child. On the other hand, Hulda Hjartardottir, chief physician at the maternity ward of the National University Hospital in Iceland, insists that the process is not biased. She explains that families who are pregnant with DS babies receive counselling and meet with mothers who have children with DS in order to ensure that they are not pressured into terminating a pregnancy (Bjornsdottir et al. 2009). One such counselor, Helga Sol Olafsdottir, explained in an interview that she does not view abortion as murder, but rather as putting an ending to potential suffering of the child and family. She also insists that complex matters such as abortion are grey areas--to say that abortion is murder is a black-and-white statement (Bjornsdottir et al. 2009). Of course, these comments sparked outrage from many individuals who assert that people with DS do not suffer any more than others, and even if they did, this is not an ethical justification for abortion.
In summary, the ethical issue of the termination of DS pregnancies is indicative of the changes that are occurring in the world of medicine. The topic of abortion has always been a controversial one, and advances in genetic testing further complicate the issue. How much control should humans have over the process of contraception and birth? Is DS a valid reason to terminate a pregnancy? Which disabilities, if any, can be considered severe enough to warrant abortion? Furthermore, this debate forces us to reflect on what kind of society we want to live in. Do we want to live in a society that consists of only able bodies? Or do we want to strive for a world in which those with conditions such as DS are advocated for and considered as equals? These questions hold great importance in both the medical and non-medical worlds, and must be kept in consideration as medicine advances.
References
Ackerman DL, Edwards JG, McDermott S, Natoli JL. 2012. Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995–2011). Prenatal Diagnosis. 32(2):142-153.
Goldstein R, Levine SP, Skotko BG. 2011. Having a son or daughter with Down syndrome: perspectives from mothers and fathers. Am J Med Genet A. 155A(10):2335-47.
Goldstein R, Levine SP, Skotko BG. 2011. Self-perceptions from people with down syndrome. Am J Med Genet A. 155A(10):2360-9.
Facts about Down Syndrome. Centers for Disease Control and Prevention. 2020 Dec 28 [accessed 2021 Feb 28]. https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html
Julian Quinones AL. "What kind of society do you want to live in?": Inside the country where Down syndrome is disappearing. CBS News. 2017 Aug 14 [accessed 2021 Feb 28]. https://www.cbsnews.com/news/down-syndrome-iceland/
Critics claim that the declining rate of DS is indicative of eugenics or even genocide. Many argue that deciding to terminate a fetus with DS implies that people with DS are less human. They point to the fact that in the past, people with DS were institutionalized, isolated, and denied education (Lajka and Quinones 2017). Considering DS as a valid reason for abortion can be viewed as a step backward with respect to the progress that has been made towards equality for people with DS and other disabilities. Furthermore, people with DS are able to live happy and healthy lives. In a 2011 study by Goldstein et al., nearly 99% of people with DS stated that they were happy with their lives. Ninety seven percent said that they liked who they are, and 96% said they liked how they look. Almost 99% reported that they felt love for their families and friends. The study also included a qualitative analysis in which people with DS encouraged others, especially health care professionals and prospective parents, to realize that people with DS have their own dreams and fulfilling lives. What’s more, a separate study by Goldstein et al. found that 99% of parents loved their son/daughter with DS and were proud of him/her (2011). Conversely, 4% of the participants indicated that they regretted going through with their pregnancies. In general, the overwhelming positivity found in both studies supports the idea that terminating a DS pregnancy is unethical.
Additionally, some individuals, such as Eric Scheidler, the executive director of Pro-Life Action League, believe that prospective parents are being pressured to choose abortion (Lajka and Quinones 2017). He states that simply being offered genetic testing adds bias. Scheidler insists that prenatal genetic testing should be used solely to prepare the family for potential health issues of the child. On the other hand, Hulda Hjartardottir, chief physician at the maternity ward of the National University Hospital in Iceland, insists that the process is not biased. She explains that families who are pregnant with DS babies receive counselling and meet with mothers who have children with DS in order to ensure that they are not pressured into terminating a pregnancy (Bjornsdottir et al. 2009). One such counselor, Helga Sol Olafsdottir, explained in an interview that she does not view abortion as murder, but rather as putting an ending to potential suffering of the child and family. She also insists that complex matters such as abortion are grey areas--to say that abortion is murder is a black-and-white statement (Bjornsdottir et al. 2009). Of course, these comments sparked outrage from many individuals who assert that people with DS do not suffer any more than others, and even if they did, this is not an ethical justification for abortion.
In summary, the ethical issue of the termination of DS pregnancies is indicative of the changes that are occurring in the world of medicine. The topic of abortion has always been a controversial one, and advances in genetic testing further complicate the issue. How much control should humans have over the process of contraception and birth? Is DS a valid reason to terminate a pregnancy? Which disabilities, if any, can be considered severe enough to warrant abortion? Furthermore, this debate forces us to reflect on what kind of society we want to live in. Do we want to live in a society that consists of only able bodies? Or do we want to strive for a world in which those with conditions such as DS are advocated for and considered as equals? These questions hold great importance in both the medical and non-medical worlds, and must be kept in consideration as medicine advances.
References
Ackerman DL, Edwards JG, McDermott S, Natoli JL. 2012. Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995–2011). Prenatal Diagnosis. 32(2):142-153.
Goldstein R, Levine SP, Skotko BG. 2011. Having a son or daughter with Down syndrome: perspectives from mothers and fathers. Am J Med Genet A. 155A(10):2335-47.
Goldstein R, Levine SP, Skotko BG. 2011. Self-perceptions from people with down syndrome. Am J Med Genet A. 155A(10):2360-9.
Facts about Down Syndrome. Centers for Disease Control and Prevention. 2020 Dec 28 [accessed 2021 Feb 28]. https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html
Julian Quinones AL. "What kind of society do you want to live in?": Inside the country where Down syndrome is disappearing. CBS News. 2017 Aug 14 [accessed 2021 Feb 28]. https://www.cbsnews.com/news/down-syndrome-iceland/
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