Ethical Implications of Prenatal Screening for Down Syndrome
Ethical Implications of Prenatal Screening for Down Syndrome
History Repeating Itself : Is Prenatal Screening for Down Syndrome Ushering in 21st Century Eugenics?
By Sami Sharp
This research paper explores the ethical implications of prenatal screening for Down Syndrome. Through researching the growth of prenatal screening in healthcare services internationally I identified the key stakeholders involved including genetic counselors, parents, Down Syndrome and society as a whole. While studying these stakeholders a clear similarity grew between current usage of PNS and eugenics. Therefore, this paper will also address the similarities and differences between the eugenics movement in the 1920’s and modern coverage of prenatal screening for down syndrome and ask the question of if we are creating a new eugenics movement. Ultimately, this analysis utilizes key ethical values and principles such as responsibility, consequentialism and autonomy and explores them from the different stakeholder’s perspectives.
Table of Contents
- Background on Down Syndrome
- Understanding Prenatal Screening
- History of Eugenics
- Role of Genetic Counselors
- Parents as Stakeholders
- Down Syndrome Community
- Impact on Society
- Comparing the Eugenics Movement with Modern Day Usage of Prenatal screening
Ever since its development in the 1950’s, prenatal screening ( PNS) has become a critical and fundamental step in testing on women during pregnancy. PNS allows doctors to screen fetuses for chromosomal abnormalities before birth.As the medical world develops, the technology in PNS continues to grow to be more advanced, allowing doctors and genetic counselors to identify more chromosomal abnormalities and the definition of the healthy fetus has evolved immensely. In this paper, I plan to address the ethicality of using PNS to prevent the birth of those with Down syndrome specifically, and the various impacts of this technology on Genetic counselors, potential parents, the down syndrome community and society as whole and therefore draw an ethical conclusion on whether we can should continue to screen for Down Syndrome.
“It is better for all the world if society can prevent those who are manifestly unfit from continuing their kind.” These are the words of Judge Olivier Wendell Holmes, a leader in the American Eugenics Movement, in 1927 when discussing the supreme court case of Buck vs Bell that authorized the usage of forced sterilization on the ‘unfit’ including the intellectually disabled. “No life is more precious than the other. There is an assumption that Down’s syndrome could be eradicated – a scary thought to think where this will end.” This quote comes from Maggie Hart the founder of The Education Centre for Children with Down’s Syndrome in 2017, while protesting proposals in the United Kingdom to introduce a new prenatal screening technique for Down syndrome. Through advancements in the medical world in the last decade, the ability of physicians to understand the characteristics of a potential child before birth has immensely grown. Specifically, these technologies have been utilized to detect chromosomal abnormalities, such as down syndrome, within an embryo and has lead to the rejection of embryos in prenatal diagnosis or the abortions of embryos carrying Down Syndrome after positive results in prenatal screenings. Therefore, 90 years after the peak of the eugenics movement, is the utilization of prenatal screening technology (PNS) causing us to return to a similar mindset in society? Furthermore, what are the ethical implications of the modern day usage of Prenatal screening for Down Syndrome? This paper will address these questions and explore the ethical dilemma through analyzing the different stakeholders of: Genetic counselors/physicians, parents, the Down syndrome population, and society as a whole.
Background on Down Syndrome
There are three different types of down syndrome, but 95% of the time the condition is caused by trisomy 21. Trisomy 21 is a result of a person having three copies of chromosome 21, instead of the usual two copies, in all cells. This is caused by abnormal cell division during the development of the sperm cell or the egg cell. As a result of the extra chromosome 21, the developing fetus will receive an extra dose of hundreds of genes which will ultimately alter the balance of proteins and other chemicals in the body. Translocation makes up for 4% of Down Syndrome cases, and occurs when a part of a whole extra chromosome 21 is formed but is attached to different chromosomes, rather than existing separately. The last type of Down Syndrome, Mosaic Down Syndrome, only makes up for 1% of all cases and occurs when some cells receive an extra copy of chromosome 21 and the rest do not. Traditionally, those with mosaic Down Syndrome will have fewer symptoms than those with Trisomy 21 or Translocation Down Syndrome.
Down Syndrome affects a person both physically and intellectually. Although it is important to recognize that not all people with Down syndrome have the same features, and the intellectual ability and disability present in people with Down’s syndrome is a spectrum that varies per child. However, the typical physical features of those with down syndrome include distinctive eyes and facial features, such as a flattened face and upward slanting eyes, short fingers and small hands and feet and short height. Additionally, people with Down Syndrome will face cognitive impairments issues with thinking and learning, and language may be delayed. Furthermore those with Down Syndrome are more likely to be subject to other medical conditions. For example, usually by the time they reach their 40s, roughly 75% of those with Down Syndrome also developed Alzheimer’s-like symptoms or dementia, due to high levels of myo-inositol in their brains particularly in the hippocampus which is a region vital to memory and learning. Other examples include increased likelihood of developing hearing loss, cataracts and congenital heart defects.
Nowadays treatments such as cardiac surgery, vaccinations, antibiotics, thyroid hormones, leukemia therapies, and anticonvulsive drugs (such as vigabatrin) have considerably improved the quality of life and life expectancy of individuals with Down Syndrome. Over 30 years ago the median age of death of a person born with Down syndrome was 1 year, but due to advances in medical care the median age of death in this has increased to 49 years, and the life expectancy of a 1-year-old person with Down syndrome is more than 60 years and this statistic is likely to improve. These improvements can also be because of changes in attitudes and understanding by society and scientists. Those with Down Syndrome used to be misunderstood and institutionalized and scientists believed they would never reach typical developmental milestones. However, in modern day society there is more understanding and empathy for the community. Children with down syndrome are raised by parents and typically attend inclusive or semi-inclusive schools.
Understanding Prenatal Screening
Prenatal screening tests are a set of procedures that are performed during pregnancy on expectant mothers to determine whether a baby is likely to have specific birth defects, including Down syndrome.
There are a variety of different forms of prenatal screening test, some of which are completely non-invasive. The three most common forms of PNS used in medical practice are Chorionic villus sampling, Amniocentesis, and AFP blood test. Chorionic villus sampling (CVS) is an invasive screening test that involves taking a small piece of tissue from the placenta. and it is usually performed between the 10th and 12th weeks ( Stickler). There are two types of CVS ; one type tests through the belly, which is called a transabdominal test, and one type tests through the cervix, which is called a transcervical test. Secondly, amniocentesis is a test performed through removing Amniotic fluid from the uterus for testing. Amniotic fluid surrounds the baby during pregnancy and contains fetal cells with the same genetic makeup as the baby, as well as various chemicals produced by the baby’s body. Lastly, the most common and non-invasive test is a blood test that measures the levels of alpha fetoprotein ( AFP) in adults. The level of AFP in the blood of the person carrying the fetus is a potential indication of fetal abnormality. This test can be performed between the 13th and 27nd week of pregnancy and provides a successful detection rate of 80 percent.
History of Eugenics
The term ‘eugenics’ has long referred to a broad class of views and activities related to altering the human gene pool. In 1883, Francis Galton introduced ‘eugenics’ to refer to the ‘well born’. By the early 20th century, the ‘socially inadequate’, including persons ‘pre- disposed to criminal activity, the promiscuous, the mentally ill and individuals with limited intellectual ability were deemed ‘defective’ as a result of genes they inherited, and these people were thought to be at risk for passing these ‘failings’ on to their children (Iltis). Galton initially wanted to use government policy to restrict marriages between undesired people so that inferior traits would not be passed on and a superior racial stock could be created. However, eventually Galton transitioned from political ideology to a religious movement to create a pure race. Galton hoped eugenics would become a religious campaign that could influence decisions made in regards to what kind of people would have children.
Additionally, American eugenics served as the catalyst for the spread of eugenics throughout the world during the 1920’s. American scientists greatly supported the eugenics movement and established the Eugenics Record Office in 1910. This establishment tracked people, specifically families, and their genetic traits and claimed that most people who were considered unfit were immigrants, minorities or poor. Furthermore, eugenics found home in the American judicial system and cases such as Buck vs Bell in the Supreme Court made it legally permissible for forced sterilization to be imposed on those considered ‘unfit.’Through understanding the history and previous attitudes of scientists during the rise of the eugenics movement, we can understand whether the current utilization of PNS is reviving those same unethical beliefs and sentiments.
Roles of Genetic Counselors
To have a full understanding of the ethical implication of the usage of PNS technologies, in this paper I explore the four different key stakeholders involved in the process. Firstly, Genetic Counselors play a key role in this ethical dilemma, as they inform parents on the implications and consequences of the diagnosis of down syndrome. Their role is also to make sure that parents are fully educated on the potential impacts and consequences of having a child with Down Syndrome.
Patients who might have a child with Down Syndrome typically see genetic counselors at two primary points: during prenatal testing to determine whether or not the baby has Down Syndrome or after delivery, to diagnose a child with Down Syndrome and provide information on the available educational and health programs needed. In addition to understand the goals of genetic counselors, The Code of Ethics states that counselors should strive to:seek out and acquire all relevant information required for any given situation, continue their education and training, remain aware of current standards of practice and recognize the limits of their own knowledge, expertise and therefore competence in any given situation. The National Society of Genetic Counselors (NSGC) states that genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease (Dixon). Additionally NSGC states that counselors are taught to be non- directive when delivering information to patients. Non-directive, or client-centered, counseling is the process of skillfully listening to a client, encouraging the person to explain his or her concerns, helping the client to understand the relevant issues, and determining a course of action.
However, the goal of non-directiveness is realistically an unachievable ideal. Medical professionals just like patients carry their own values and beliefs, and these beliefs can shape a genetic counselors approach to their work. Even though counselors strive for non-directiveness, we have to consider how social constructs and views of those with Down Syndrome may implement implicit bias into Genetic Counselors’ advice. This implicit bias is evident throughout Genetic counselors work, and can even manifest into certain phrases that are used during counselling such as, ‘I’m sorry,’ or ‘Unfortunately,I have some bad news to share,’ when delivering the results of PNS. These phrases show an implicit negative view towards Down Syndrome and the future wellbeing of a patient’s child. Additionally, conversations between a genetic counselor and patients after a positive result may often avoid discussing the positive realities of having a child with down syndrome in the modern day. For example, there can be a lack of reassurance to a patient that many individuals with Down Syndrome can become semi-independent and with good medical care may live far into adulthood.
This creates a difficult challenge in balancing patients’ autonomy to make choices about a potential child with the medical and moral responsibility of genetic counselors. In a sense, the concept of genetic counselling itself can be seen as an intrusion on a patient’s autonomy, as counsellors are determining whether or not a fetus is ‘healthy.’ It is then in the genetic counselor’s power to determine what ‘healthy’ means and to what level can a fetus be determined healthy or not. Furthermore, patients have reported genetic counselors discussing termination options straight after positive results, before acknowledging the patient’s desires or reactions. Processes like this demonstrate a systematic bias in genetic counselling and show how these institutions have a system that implicitly promotes a harmful view towards fetuses with Down Syndrome and recommends certain actions that should be taken by patients. Moreover, genetic counselors power and influence is intensified during PNS because of the typical inequality in knowledge and understanding between counselor and patient. It is essential to acknowledge that genetic counselors are educated specifically to understand genetic conditions and PNS technology and the consequential results. Therefore, a patient can never be 100% autonomous when making decisions after PNS because they rely on medical professionals such as genetic counselors to be informed and gain understanding on the results of their tests.
When considering the impacts of genetic counselors it is important to consider the difference between consent and informed consent. Even though patients are given the opportunity to consent to PNS technologies and the decisions that are made as a result of them, these decisions are not always made with informed consent that is impartial and not influenced by values and views of genetic counselors. Overall, we have to consider what role Genetic Counselors play in the selection of embryos or the future action taken after prenatal screening. It is important to understand the power of genetic counselors to influence the decisions of their patients and how that could promote the act of preventing the birth of those with Down Syndrome.
Parents as Stakeholders
Parents are the ones making the decisions and crafting the fate of the potential child. Essentially, they are speaking for a potential child and deciding what child they want to bring into the world. When exploring this stakeholder, one must question what the effects of raising a child with Down Syndrome are, why traditionally parents are hesitant to raise a child with Down Syndrome and why the desire for the healthiest child exists within society and in the medical world. We have to understand that when parents undergo prenatal screening there is intent to be informed on the future of their child. As a parent there is a moral responsibility to be prepared for their child and also to be educated on the health and medical challenges that a child could face. Therefore, the ethicality of whether parents decide to utilize PNS is not questionable, but in fact the ethical question is the decision parents ultimately make from the result of PNS.
When understanding why parents might ultimately choose to terminate a pregnancy after discovering a fetus has down syndrome, there are several different factors that could contribute to such a decision. However, one key factor is misconceptions and misunderstanding of the future of raising a child with Down Syndrome. As parents strive to assure a perfectly ‘healthy’ child, it is not understood that many children born with Down Syndrome can live completely healthy lives and may not be subject to certain medical conditions and will only experience impairments or a lessened quality in their physical and cognitive abilities. Additionally, there is a social stigma around Down Syndrome caused by stereotypes, which can create a discomfort and unappeal around discussing the truth and reality of the impacts of Down Syndrome. Societal norms of a ‘traditional’ family also do not include an image of disabled children, which can cause new parents to have a negative or disappointed reaction when discovering that their future family could not emulate the traditional image of families in society.
However, the principle of autonomy still remains essential for parents in this ethical dilemma. While there has been a development in aid with Down Syndrome, which has allowed parents to have more support, it still remains a fact that raising a child with Down Syndrome is more difficult than raising a completely abled child. This raises issues of access and capability when analyzing parents as a stakeholder. When thinking about access we have to consider different characteristics such as socioeconomic status and family situations. Certain medical or psychological treatments for children can cost thousands of dollars. Most children with Down Syndrome will undergo physical therapy to build motor skills, increase muscle strength, and improve posture and balance. Moreover, most children will see a speech-language therapist who can help them develop the early skills necessary for communication. Lastly, to develop everyday self care skills such as eating, getting dressed, and writing, children will see occupational therapists, and further in life these therapists will help teenagers identify jobs, careers, or skills. These therapies can rate at $50-$400 per hour, but are critical to the development when raising a child with down syndrome. However, it is evident that certain parents cannot afford the costs that can come from the additional necessary prices when raising a child with Down Syndrome. It is crucial to not ignore these facts when thinking about the role of parents in decision-making during PNS. To allow parents to have full autonomy, we have to allow parents to have autonomy over their economic decisions as well. It is important to compare the ethicality between choosing not to follow through with the birth of a child with Down Syndrome and choosing to have a child with Down Syndrome but not having the means to support the costs that could arise through treatments such as therapies.
Not only can raising a child with Down syndrome create issues of access for parents, specifically in terms of economic availability, it can also test and cause a great impact on the emotional capabilities of parents. Due to the greater obstacles that parents face when caring for a child with down syndrome, the toll on a family can have immense emotional consequences and challenges. The amount of attention that is required from parents to a child with down syndrome can impact other aspects of their life. There is an increased impact on work typically because it is reported that there is an increased demand on parents’ time due to therapy appointments and medical visits for the child. Moreover, this can impact families with other children, and parents have to consider the change that raising a child with down syndrome can have on typical and traditional family dynamics. Nevertheless, in modern society there has been a growth in support and assistance for parents and families of people with Down Syndrome. With an increased understanding of parents’ struggles and the impact of raising a child with Down syndrome, occupational therapists have created accessible programs to assist parents and children in developing healthy ways of coping and adapting. Also, with the development of more appreciation and support a national network of thousands of parents, grandparents, and families who raise Down syndrome children has risen to offer support and advice to new parents.
Parents are key stakeholders in this ethical discussion, and we have to understand how preferences in family structures and views of a ‘normal family,’as well as fear of the costs and implications of raising a child with Down Syndrome can lead to the rise of PNS being utilized specifically to eradicate Down Syndrome.
Down Syndrome Community
One of the key ethical considerations in this discussion is analyzing how the modern Down Syndrome population and community are being affected by the precedent that is being set and the messages that are being sent about their value and worth as well as their position in society, when using PNS to terminate embryos with down syndrome. To analyze the intent in preventing the birth of those with down syndrome, it is important to analyze simultaneously the place and respect of the down syndrome community in society. Down syndrome is the most common genetic disease in the United States and about one in every 700 babies is born with the condition. Regardless of the fact that Down Syndrome is an incredibly common genetic condition, the community is still commonly misunderstood and viewed differently from the rest of the society.
As PNS grows in popularity and appreciation within the medical world, the perception towards those with down syndrome could grow to become more stigmatized. With a decline of the births of children with down syndrome, those with the condition have the danger of being more separated and seen as outcast from the idea of normality within society. These technologies allow a precedent to be set in society that those within the down syndrome population are unwanted and aren’t valued citizens and contributors to society. Not only is a precedent like this dangerous for society’s role in defining normality and what is ‘right and wrong’ but it also harms the value that those with down syndrome put on themselves. We have to consider to what extent are a person’s gametic or genetic origins essential to their identity. Additionally, it is important to question if we can see Down Syndrome as a part of one’s identity that is not negative and doesn’t determine every part of their identity.
Furthermore, when examining the improvements within the down syndrome population, the important concept of ‘quality of life’ arises. As mentioned before, medical advancements and improvements in understanding have made the quality of life of those with down syndrome improve greatly. Quality of life is highly subjective, but essentially through deciding that those with down syndrome should be detected before birth and possibly eliminated, the message is being sent that their quality of life isn’t ‘good enough’ or worth the opportunity to live in our society. One way to evaluate one’s quality of life is through questioning if a child is better off before birth or if it is worse off in the relevant world. Another way to measure quality of life is through asking: is a person’s future positive experiences less valuable than her future negative experiences? Analyzing quality of life through these perspectives allows society to face the true intent in eradicating down syndrome with PNS technologies, and whether it is because of societal norms or pressures, or a true measure of the quality of life of those with down syndrome.
Lastly, a key value when addressing the down syndrome population and community as a stakeholder is equality. If Down Syndrome is truly considered an aspect of one’s identity, then the value of equality could be challenged. Essentially the idea that each of us is equal in human value regardless of aspects of our identity, such as wealth, religion, or disability, is at risk today through the usage of PNS. When analyzing whether the usage of PNS to eliminate down syndrome could contribute to the rise of a new eugenics movement, we have to consider the precedent that it is setting for the treatment of those with Down Syndrome, and if we define this condition as a part of someone’s identity, what is their value is in society ?
Impact on Society
The last stakeholder of society itself has a large impact when analyzing the possible resurgence of a new eugenics movement, and has an influence on the role of the other stakeholders.
Firstly, the usage and implementation of PNS technology can create a slippery slope in society. Not only can it create a slippery slope in how we view those with Down Syndrome in society, as discussed before, but also in the abilities and normalization of these screening technologies. We could get carried away ‘correcting’ or not selecting perfectly healthy babies. Once we start down the slippery slope of eliminating embryos because they are diseased, what is to stop us from picking babies for their physical or psychological traits? However, we could also begin to use PNS technology to detect conditions or diseases that are not detrimental to the wellbeing or quality of life of a potential child. As PNS technology becomes normalized and more common in occurrence, we have to question if we will breed a generation of ‘super’ humans who have been picked because of their genetic makeup who look down on those with genetic imperfections or conditions. Due to this, discrimination against people already born with disabilities could increase if they are perceived as genetically inferior. It is necessary to question the regulation of screening technologies, and to what extent can medical professionals regulate and check the development and advancements of PNS ? Furthermore, how will society regulate itself and as attitudes change towards genetic conditions, what will stop the push and desire from society for more screening tests during pregnancies?
Subsequently, the usage of PNS creates a social influence on how we view good and bad. To make intentional changes in genes or to intentionally choose which genetic conditions should be allowed within society, would require that we, as a society, agree on how to classify ‘good’ and ‘bad’ genes. We do not have the necessary criteria, nor are there mechanisms for establishing such measures, as views on definitions of good and bad are subjective and vary depending on one’s values and perspectives. Therefore, any formulation of such criteria would inevitably reflect particular current social biases. Not only could societal influence on the usage of PNS create a universal definition for how one views good and bad, but it could also create a lack of diversity in modern society. Not only is this harmful to creating a lack of diversity within the gene pool, which could have unintended and unpredictable consequences as we begin to discover new technologies to alter human genes, but it could have a harmful impact on the societal expectations of diversity in a population. As terminations of fetuses with down syndrome rises in normality, society’s definition of diversity could change. Diversity includes differences in race, ethnicity, economic status and ability. However as certain disabilities are eradicated, new definitions of diversity could form and potentially be less valued.
Through analyzing society as a whole as a stakeholder, we can understand how implicit bias towards those with Down Syndrome and societal pressure can lead to a slippery slope towards a new rise of eugenics, where we strive to eliminate the genes with Down Syndrome based on our societal norms that view those with disabilities as ‘less than’ or unfit. To understand the true impacts of PNS technologies on different societies, one can analyze differing nation’s perspectives and approaches towards PNS regulation and the impact of the growth of PNS in different societies. Firstly, Iceland has been illustrated as one of the most radical nations in their approach to PNS technology. Due to increased access to PNS to the Icealandic public, the down syndrome population within Iceland has been dramatically affected. Data released in Iceland shows that within the last 10 years, since Prenatal screening was introduced, nearly 100% of women in Iceland who chose to undergo prenatal screening, which is around 85% of the total population, had an abortion after discovering their embryo had Down syndrome. This has resulted in a dramatic decrease in the population. Infact, according to a report from the Icelandic government in 2018, on average, during the past ten years only 2-3 children have been born each year with Down’s syndrome in Iceland.
A similar trend has been seen in the UK thanks to a new and more accurate test for Down’s syndrome introduced by the NHS, making it more accessible to the general public. The availability of these tests have seen a rise in the number of women opting for PNS, and data now shows that of 66% of pregnant women in the UK who take up screening for down syndrome, 90% who get a positive result choose to have an abortion. The UK is a clear example of the impact of a national health care service on the accessibility to PNS, which can contribute to higher rates of those who chose to terminate pregnancies of fetuses with down syndrome. However, the UK is also one of the nations demonstrating the high amounts of protest and backlash against wider access to these tests. For example, Don’t Screen Us Out is a well known campaign group against non-invasive prenatal screening technology in the NHS. Similarly, prenatal blood tests to diagnose Down syndrome will soon be covered by public health insurance in Germany. This issue has sparked an ethical debate within German citizens with some critics saying the change could lead to more abortions.Lastly, in the United States rates for PNS technology usage is lower than the rates of Iceland, Great Britain and Germany. Additionally, between 70 and 85 percent of women in the U.S. confronted with a prenatal diagnosis of Down Syndrome choose abortion, and this figure has descreased by 10% in the last 30 years. However, within the United States the usage of prenatal screening technologies has created a national debate over selective abortions. Since the 1930’s, doctors who were arguing for legalized abortion used the prospect of aborting fetuses with ‘deformities’ as a rationale for abortion in the case of medical necessity. On the other hand, in certain states such as Louisiana and North Dakota, selective abortion ban bills have made it illegal to abort pregnancies because of the diagnosis of disabilities and genetic conditions, including Down syndrome.
Through analyzing the occurrence and rates of usage of PNS technologies within different nations, we can understand how issues of access can influence a patient’s decisions after positive results to PNS tests. Furthermore, we can question whether nations with National Healthcare services are more likely to create the spread of PNS technology and therefore are more likely to experience the rise of a new eugenics movement.
Comparing the Eugenics Movement with Modern Day Usage of Prenatal Screening
Through understanding the definition and implementation of eugenics in the past and analyzing the key four stakeholders in the modern day PNS practices, we can properly analyze whether the prevention of the birth of those with Down Syndrome can be considered a eugenic movement. Analyzing moral similarities and differences between the 20th century eugenics movement in the USA and contemporary uses of PNS, PND, abortion and PGD, can allow us to truly identify the ethical issues and implication.
Firstly, we can draw a comparison between the scientific knowledge and background used in current day and in the early 20th century. The science behind the eugenics movement was wrong but PNS, PND and PGD relies on a solid understanding of genetics and statistics. Although today’s science is far better, it is far from perfect. However we have to understand the impacts of further development of PNS. We must remain open to the possibility that in the future it will be possible to use PNS, PND and PGD to detect a wider range of characteristics or predispositions, some of which will be thought to be socially undesirable.
Secondly, we can compare the attitudes and perspectives that prevail in modern day and the similarities and differences between those attitudes in the eugenics movements. The eugenics movement was about ‘imbeciles’, the ‘feeble-minded’, criminals and the poor, and it reflected racist and classist biases and judgements. Today we focus on ‘real’ diseases, including fatal conditions and conditions that are objectively bad’. However we have to recognize the attitude, whether implicit or explicit , of the medical world towards Down Syndrome. Given that many people born with Down syndrome live long, healthy and fulfilling lives, the justification used to support terminating the pregnancies of those with down syndrome, cannot be that Down syndrome is objectively bad and abortion will free those with the condition from a life of ‘suffering’.Overall we have to acknowledge why society encourages PNS to detect Down syndrome and question if it is because we continue to adhere to the attitudes that prevailed in the 19th and 20th centuries. The last comparison we can draw is the concept of consent and patients rights to understanding. The eugenics movement violated the rights and interests of living people through sterilisation and marriage restrictions. Today PNS, and abortion, and embryo selection promote the rights and interests of living people which enables parents and prospective parents to make informed private decisions. A clear positive side of PNS technology is that it gives parents the autonomy to make their own decision about a potential child and allows parents to have more information on their child before birth, which allows parents to be more prepared for their future.
The eugenics movement was a dark period of American history that demonstrated bias and prejudices towards the poor, criminals, the disabled and those of certain races. It is essential that our society strives to never return to a similar movement. However, through the modern day usage of PNS to detect down syndrome and the rise in subsequent abortions as a reult of positive tests, it is clear that there has been a silent resurgence of similiar attitudes and ideals that were present during the eugenics movment in the 1920’s. To ensure that PNS is used positively in society, we have to be aware of the prejudices that are being projected into medical and societal advice and ensure that parents are given full autonomy to be educated on the true realities of raising a child with down syndrome in the present day, including the improvement in life expectancy and abilities, and that parents are able to make independent decisions about the future of their child.
Through my research and studies, I have developed my own opinions on the usage and implementation of PNS in our modern society. I have framed my opinion around the two key ethical principles I identified of autonomy and consequentialism. Firstly, I believe that all women should have the right and autonomy to access PNS technology. Additionally, I believe that it is within the rights of women to always decide the choices they make regarding their pregnancies, and I believe that this right includes the choice to terminate pregnancies after receiving a positive diagnosis for down syndrome after a screening. I think this is important because of the issues of accessibility of resources and support that are necessary to raise a child with down syndrome, regardless of the gravity of the disability. However, I do believe that the increasing rates of women choosing to terminate pregnancies of fetuses with down syndrome, is largely due to lack of information, education and understanding. I believe that medical advisors, physicians and genetic counselors strive for the birth of the ‘healthiest’ babies, but do not consider and advise patients on the positive and improving realities of raising babies with down syndrome. Therefore, I believe that one can not support the current usage of PNS technologies for Down syndrome due to the implicit bias of key stakeholders. Nonetheless, I think with reforms to the system of PNS usage would allow women to maintain autonomy over decisions about their pregnancy but also would allow it to be a completely independent and unbiased choice.
Furthermore, regardless of the importance to ensure the autonomy of women, I believe it is important to analyze PNS through a consequentialist principle. Even though I do not believe that PNS technology for Down syndrome should be completely prohibited I do think that all stakeholders must understand the consequences of their actions. Each individual stakeholder plays a role in setting a precedent in society that disabilities and diversity in the population should be eradicated completely, which could lead to the overall rise of a new eugenics movement. Once again, in order to prohibit this slippery slope I believe that education on modern reality is essential and genetic counselors and medical practitioners specifically should work to bust myths and biases of Down syndrome in society.
If given the chance to continue my research I would like to further question and explore what our society would look like without Down Syndrome. Additionally I would like to extend my research into comparing PNS technologies with prenatal diagnosis usage in IVF clinics and think about what other aspects of one’s identity could seen be a target for PND/PNS and consider what the ethical differences are between not implanting an embryo with Down Syndrome or aborting an embryo with Down Syndrome.
To conclude, through analyzing Genetic counselors, parents, the down syndrome population and society as whole as stakeholders, we can understand how when measuring the ethicality of the usage of PNS technology, we have to address these four stakeholders’ roles in the ethical discussion. Through exploring the perspectives of the different stakeholders, we can identify the key ethical values in the ethical dilemma. Overall, responsibility, equality, consequentialism and autonomy are the most prominent ethical values and principles that play a role when comparing the ethical issues involved in the dilemma. In conclusion, through my research and analysis of the ethical dilemma, it is evident that prenatal screening for down syndrome is creating an alarming pathway and slippery slope in our society towards a new, modern and dangerous eugenics movement.