The Abortion of Fetuses with Down Syndrome

charlot_400In America today abortion is legal.  However, there are many points of contention where the ethicality is questioned.  The purpose of this paper is to discuss whether or not it is ethical to treat Down Syndrome abortions differently within the context of a country where abortion is legal.  Through the lenses of autonomy, fairness, quality of life, and societal implications, this paper will analyze what makes fetuses with Down Syndrome so different from others and if that is enough to justify a parent’s choice.

 

 


Introduction

There are many reasons why a woman would have an abortion.  Anything from finances to family can be a deciding factor.  Some women feel they are too young or are simply not ready for the kind of responsibility a child requires.  In America the average family spends 245,340 dollars raising one child until the time they are 18 years old (Department of Agriculture).  After this, a family may pay for college, but after that most children have learned how to support themselves and they are able to deal with their finances themselves.  Still, this large figure does not include for the things a child with special needs requires.  Many families that have a child with Down Syndrome send their child to the following therapies: speech therapy, occupational therapy, behavioral therapy, and life skills therapy.  The cost of just these therapies for 18 years can be upwards of 460,000 dollars (Monique Ruffin).  It is also customary for children with Down Syndrome to go to a private school because public schools may lack in the special needs department especially in less affluent communities.   The cost of therapies, plus the amount it costs to raise and child without special needs, plus the cost of a special needs school could add up to a grand total of around 861,000 dollars.  In addition, these costs do not go away after 18 years or even after college.  Children with Down Syndrome do not grow out of their disability and therefore will need most of these services for the entirety of their life, even after the parents are gone.  Beyond the added financial needs, a child with a disability also needs greater emotional support.  All these facts make it clear that it is not easy to raise a child with Down Syndrome.  Even if you are ready to have a child without special needs that does not mean you are ready to have a child with them and if you are not ready to take care of any child taking care of a child with Down Syndrome may be more than you can handle.

However, in the recent past, it was unlikely for a woman to have her child be tested for Down Syndrome and it was even more unlikely that she would have an abortion for it.  This is because the technologies did not permit a woman to get a diagnostic test until the second trimester and it carried high risks such as miscarriage.  Less women opted to get these test done because of these risks.  The women that did the test had a limited amount of time to abort if they receive a positive diagnosis because not many states allow abortions past the second trimester or the abortions put the mother in danger.   The newly developed technologies allow expecting families to get more accurate information with less risk and earlier in their pregnancy.   This gives the topic of Down Syndrome abortions new relevance because earlier access to this information allows for more expecting mothers and families to safely abort.  As these procedures become more popular, there has been a push to create legislation about them.  Many states in the last couple of years have decided to outlaw abortions for fetuses with Down Syndrome or have started debates on the subject including, North Dakota and Ohio.  This is why it is so important to have this discussion; it will soon affect what we can and cannot legally do.

The goal of this paper is to discuss the permissibility of aborting a fetus with Down Syndrome.  I will not be commenting on abortion as a whole but rather arguing my points in the context of a country where abortion, for a child with or without special needs, is legal.  This is an important conversation to have not only a women but also as human beings.  This topic does not seem to be as black and white as general abortions.   In fact,  pro-lifers sometimes find themselves  leaning more towards pro-choice in this situation and vice versa.  It pushes the boundaries of what we deem as appropriate reason to abort and what is a woman’s choice versus what she must accept.  In the community there are many  opinions but this paper will focus on the two most opposing views.  The first stance is no, it is not ethically permissible because it would be stopping a child from having a life simply because he or she has a disability and that would constitute discrimination.  A second opinion is that it is ethically permissible because raising a child with Down Syndrome that you are not ready for will harm both the family and child. Both sides are backed by fact and personal experiences and both sides have their pros and cons.  Because this is such a complex topic the ethical perspectives vary even more than what will be in this paper but this paper will include the largest views.  Because this is such a personal decision the permissibility rests on a person’s interpretation of the three values discussed in this paper: autonomy, fairness, and social implications.  For each other these sections there are legitable reasons to side with all the different views presented.
Factual background

Before getting into the ethical considerations it is important to know the facts of prenatal diagnosis. When a baby is diagnosed with Down Syndrome the severity of their case is unknown.  This is a very important factor when considering a parent’s decision because they do not know if their child will be able to lead a normal, healthy life, or if they will need constant medical care for the entirety of their lives.   From birth, people with Down Syndrome are automatically more susceptible  to certain diseases than their counterparts.  These diseases include congenital heart defects, sleep apnea, and Alzheimer’s disease.  There is also research now showing that they are also at a higher risks for celiac disease, autism, childhood leukemia and seizures.  Children with Down Syndrome will most likely have some speech impairments and need physical therapy.  Although these are not diseases they are things that will need to be addressed and probably have a monetary cost attached to them.  However, research has shown that children with Down Syndrome who develop childhood leukemia are more likely to recover and recover quickly.  Additional, people with Down Syndrome are less likely to have a hard tumor or a cardiovascular disease like a stroke or heart attack.  Most people with Down Syndrome also have physical traits that are unique to them like low muscle tone, flat faces, small noses, and an upward slant in their eyes (WedMD).  If the parents decide to keep the fetus they must understand that any of these situations is a possibility or anywhere in between.
There are many ways to get a prenatal diagnosis of Down syndrome. During the first trimester,blood testing and ultrasounds are the most common routes to diagnosis.  You can also receive an integrated screening which is a combination of both a blood test and ultrasound.  Cell-free fetal DNA analysis or amniocentesis are also viable options.  Amniocentesis is where some of the amniotic fluid around the fetus is extracted and tested.  In cell-free fetal DNA analysis, the fetus’ DNA that is in the mother’s blood stream will be will be checked.  This procedure is available after 10 weeks. Cell-free fetal DNA analysis is a very new procedure and it changes the way we are able to diagnose Down Syndrome because it is a complete diagnosis rather than just a screening and it can happen much earlier than any other test like it.  This is the test that has changed the relevance of Down Syndrome abortions.  There are a few other options but they happen later in the pregnancy and carry higher risks, including harm to mother and miscarriage,  so very few mothers opt to try them.  Because these options are becoming available earlier in a pregnancy and are less invasive and therefore less expensive they are becoming increasingly popular as well.  In fact, besides a moral aversion or an access problem, there are not many reasons nowadays that a woman would refuse to at least screen for down syndrome among other things.

Autonomy

Down Syndrome is the most common chromosomal disorder.  In American about 1 in every 700, which equals around 6,000, babies is born with the abnormality a year according to the National Down Syndrome Society.  They also estimate that there are about 400,000 people living with Down Syndrome in America today and number continues to steadily grow.  As the mother gets older in age it becomes more and more likely for her potential baby to have Down Syndrome.  At the age of twenty a woman has a 0.07% chance of having a baby.  By the time she is forty she has a 1.2% chance of having a baby with Down Syndrome.  Even though women over 40 have the greatest chance, because women around the age of 35 try to have children so much more, most children with Down Syndrome are born to mothers closer to that age.

According to the Centers for Disease Control and Prevention, about 80 percent of children with Down Syndrome are born to women around the age of 35.  By this age people are likely to have established stability in their lives and have practiced making high stakes decisions for a number of years.  This means that most mothers faced with this question are trying to have children and have prepared themselves for the decisions they will have to make. At this point in their life they have built some form of a family or support system and have made the conscious choice to make an addition to that family.  In addition, women in their early twenties may still be immature or not able to fully grasp the gravity of the situation but by the time the reach their late twenties and beyond they commonly have depth and the perception to look at things from multiple sides.  Because these women are so equipped to make these decisions, it is only right that we grant them full autonomy so they are able to make them.  They have autonomy in all other situations in their lives and it would be unreasonable if they were not allowed to choose for themselves if they were ready to raise a baby or not.
However, age does not guarantee maturity.  Maturity comes with life experience and although that can be sometimes attached to age it does not completely equate.  To make a literal life or death decision, a person requires a certain level maturity that can be hard to attain at any age.  Unfortunately, maturity is a very abstract thing and it is very hard to measure maturity and the closest quantifiable thing to it is age.  In some cases the women faced with this ethical question may not have the maturity to deal with the dilemma. In this situation, the expertise of a medical professional and the opinions of loved ones should be weighed to add the maturity of the mother.

Another possible threat to a woman’s autonomy could be her history with conceiving children. If a woman has been trying for a long time to have a baby she may be too emotional to think rationally about her situation.  If she has had unsuccessful pregnancies in the past she may be so grateful for a successful one that she rushes into making a decision because she does not want to try again.  This can be dangerous for both her and the prospective child because if she is not ready to raise a child with special needs both she and the child will suffer.  Similarly, if a woman was hoping for the “perfect” baby she may be disappointed and not fully educate herself on what life with a child with special needs is really like.  This may produce regret or resentment later and life.  These and myriad of other feelings can infringe on better judgement.  Without proper time and advisory a woman will not be able to consider her options and the impact her actions will have on her and her fetus for the remainder of their lives.

Creating regulations for abortion of Down Syndrome fetuses would limit the autonomy of the mother and family.  Because the family of the fetus is the greatest stakeholder in this situation, it can be argued that each family deserves its own situation and therefore, deserves its own autonomy.  The decisions made regarding the abortion of a fetus with Down Syndrome will have more of an affect on the members of the fetus’ family than any other stakeholder in the situation (ie. doctor, other family members, Down Syndrome community, etc).  For this reason, it is the family who should have the final say. Because each family is different a blanket statement cannot be made.  Parents have different motives, financial situations, support systems, family needs etc.  All of these things should play a role in the advice given by doctors and other professionals (ex: therapist) and the decision made by the family.  Of course, the family is most likely not very well versed in the realities of raising a child with Down Syndrome so the advice given by experts can be crucial to a family’s experience.  A family should not be forced to take care of a child they are not equipped to take care of.  Everyone has the right to control what happens in their life. However so families are not always educated enough about the medical facts to make the decision for themselves. The doctor who is providing the family with the diagnosis and testing should be responsible for providing the family with the resources they will need to educate themselves.   This process is used in other medical situations as well.  For example, if a person is seeking cancer treatment the doctor must inform them of their options fully before they make their decision.  This may mean printing articles or explaining what Down Syndrome is.  Although the doctor is responsible for providing the needed information they are responsible if the family decides not to take advantage of those resources.
It can also be argued that even though the family is the main stakeholder they are not the best ones to make the decision.  As previously stated these families are most often not experts and because there is a legal limit to when a woman can have an abortion the family has a time sensitive decision.  According to the Mayo Clinic, the earliest time a woman can receive a safe, diagnostic test for Down Syndrome is at 15 weeks.  41 states have a restriction on the time when a woman can have an abortion. The majority of those states allow abortions up to 24 to 26 weeks according to the New York Times article “Abortion Restrictions in States” so it is most likely that the family will have about two months to make this decision.  For many families this may not be enough time to make such a serious decision.  It  is also easy for families who are not firm to be swayed with the strong opinions of others without really considering what is best for them and the fetus.  For these reasons some say, legislatures, who have educated themselves and their peers on the issue, should be the one’s to make the decision.  They would have as much time as they needed to become as well versed as possible on the issue and their knowledge plus the variety of views equals a fair, firm, and reasonable solution that applies to everyone.  However a legislature can not pick up on the nuanced experiences that every single person has.  If people had their own information or wanted to challenge they would have to go to court.  This means that people’s autonomy would be limited by the opinions of others and may not account for their personal experiences.
Every family has the right to make this decision for themselves.  Only the family can truly know what they are capable of.  However, autonomy should only be granted when the family has acquired an adequate amount of information about the life their child could have and what is required to give a child with Down Syndrome a good quality of life. Many parents do not know enough at first to truly make the decision that is right for them when they are asked to decide.  At the very least parents must work with their doctor and do their own research with several different points of view to find out all of their options before their autonomy can be fully respected.  Every person has a right to control their lives when it is possible but because this is such a large decision you really have to make sure that they are ready to make it.

Fairness

In addition to autonomy there are many more things to consider. It is important to also address the questions that seem simple.  We must beg the question: Is it fair to treating abortions with or without Down Syndrome differently.  In the autonomy section the rights of the individual but fairness is a consideration for what affect your actions have beyond just the individual.  Fairness is the quality of making decisions free of discrimination.  In the context of this discussion this means that you have to judge abortions with Down Syndrome and abortions without Down Syndrome with the same criteria.  This may seem basic but fairness is very subjective and there’s many layers that go into fairness.  A women can abort a fetus if she feels that she cannot financially support it.  This would be a valid concern for her because raising a child requires some level of economic stability and commitment.  It may be understood that having a baby you can not financially support is not only detrimental to the family but also to the baby because the baby would be raised without resources that are essential to its growth.  This is even more true when Down Syndrome is introduced.  Children with Down Syndrome require more than the basic things that other children require.  Caring for a child with Down Syndrome takes a lifelong financial toll on the family even after the parents have passed away.  It is not fair to force a family to take on that burden because another family would not have to do so.  A child with this disability, even at its least severe, will need extra medical care, speech and physical therapy, and more.
A parent who can not provide this for that child and still chooses to have them is doing a great disservice to their child. However a parent’s only other alternative would be to never have that child at all.  Going into something knowingly unprepared is not likely to go well.  If a parent is not economically or emotionally stable enough to sustain and take care of a child it can have a very large negative impact on a child.  Economic stability is not a requirement but rather suggestion.  If people were required to be economically stable that could lead to a slippery slope where only people who make above a certain income are allowed to have children.  A child without a diseases or impairments has the best chance to make a life for themselves regardless of their parent’s situation.  However, a child with Down Syndrome who relies more heavily on the parent does not have that same opportunity.  It is unfair to force both the parent and child to simply make it work if the resources are not there.  It is most likely that after birth the family’s situation will not suddenly get better and even if it did that is not something that can be counted on.  On the other hand, it is not fair to rob a someone of their chance at life simply because they have a disability that they cannot control.  People with Down Syndrome have lead very full lives in spite of their disability.  You can not assume simply because they have a disability that they can not have a good life.  To deprive them of that chance would not only be detrimental to them but to the families as well.
It is also possible that the family may want to raise a child with disabilities but they do not have the money to support that child.  In a case like this were the family has the emotional capacity but not the material capacity, the state should step in and provide what the family cannot.  This is fair because the family is not asking for therapies that are optional.  Because the family is lacking things that will determine how successful their child is in the future the state should assist the family and prevent them from having to abort the fetus.  This an easier solution than if the family had the financial means but not the emotional capacity to take care of a child with Down Syndrome.  This is because money is a tangible thing that can be gained multiple ways but the love and patience that a special needs child requires are traits that not everyone has and if you do not have them t is much harder than money to acquire.  As of right now a child can apply to receive an SSI or an Supplementary Security Income on their behalf (Down Syndrome Information Alliance). Eligibility is based off of the household income and the child’s medical status. In a situation where the family is lacking emotionally it is possible for them to hire a professional caretaker to care for the child.  This would also provide the child with someone who could be around even after the parents are gone.  This would be a fair solution because the parents are not forced to hire someone and the child is not receiving all the things he or she needs.
It is unfair to force both the child and parent into a relationship they are not ready for because it will do more damage to the child.  Raising a child with Down Syndrome is not the wrong thing to do and it can be very rewarding, but having a child with Down Syndrome is also very demanding and if the parents are not ready for that it may be hard for them and the child to adjust.  This is why the government should help families with child who have disabilities if they cannot support themselves.  It is also not fair to rely on the hope that everything will turn out ok or base a decision off the possibility of the situation changing.  Because no one knows what will happen in the future, it is best to base the decision of your present situation.  Yes, people with Down Syndrome can lead fulfilling lives but only in the right conditions.

Social Implications

In the fairness we analyze if it was fair to treat families differently.  However, there is another group who will be affected by these decisions that we should also take into account.  This group is society, both America as a whole and the subset of people with Down Syndrome and their fmailies.  Right now there are about 400,000 in America living with Down Syndrome.  While this is a lot of people it only amounts to about 0.1% of the American populations.  Eventually, this practice could eradicate Down Syndrome and diseases similar to it.  We can not simply get rid of the things that we deem unworthy;how is that any different than discriminating against races, religions, genders, etc.?  There is a natural variety in humankind that we should celebrate rather than isolate and attack.  All the same, if we have the power to create a stronger, healthy generation with a better quality of life, why shouldn’t we?  Though Down Syndrome is not fatal, it does decrease the quality of life and life expectancy.  If we have the opportunity to give our children longer, healthier lives it is not discriminatory to take it.  Eradicating illnesses is not the same as targeting racial, socioeconomic, or related groups because those groups do not directly affect your health.  Moving towards a healthier population is not a step backwards but a step forwards. However, this idea could lead to a slippery slope in trying to genetically create what we consider to be a race with perfect health.
People point out the things they see as different.  If we allowed people to abort a fetus because it tested positive for Down Syndrome, the number of people living with it would decrease.  This would limit visibility, hurting people with and without the disability.  As  society we are more tolerant of things if we see them often.  As the number of people living with Down Syndrome would create isolation and intolerance.  It would discourage other families to have children with Down Syndrome and it would discourage the people already living with Down Syndrome.  It would send a message that giving birth was a mistake, that they are a burden to their families, and they would not be as inspired to go for what they wanted because they would not see anyone like them doing it.  However, society is not raising the child.  Whether a family chooses to carry to term or abort, it will affect them more than anyone else.  We should teach people to treat everyone with kindness, regardless of how many people like them there are.
In addition, just because abortion is available does not mean that everyone will choose abortion.  It simply means that the option is there for those who need it.  At the same time, as these new technologies are developed for abortions, technologies are improved for life.  The number of people living with Down Syndrome has increased and so has the life expectancy.  Through education the stigma has gone down as well.  Down Syndrome is now considered a disability and not a disease and people are generally more accepting.  On the other hand, even if you are not forced to abort for Down Syndrome, abortions will become more popular as time goes on simply because of access and the evolution of technologies.  Even if it is gradual because the percentage of people with Down Syndrome is so small, it can have a large impact.  If abortion for fetuses with Down Syndrome is continued it will spread to more hospitals and medical practice and be preformed by more and more doctors.  As more and more women have access and knowledge more women with opt to do the procedure.
More generally, continuing and outlawing these abortions can both lead to slippery slopes.  If we allow these abortions, we can start to bridge the gap between what is a real medical condition that will affect a child’s life and what is just an inconvenience to the parents.  If we begin with down syndrome we could move on to aborting for things like deafness that do have an affect on the child but is not fatal and do not prevent a child from having a good quality of life.  From there ,we can move or to allowing abortions for physical attributes like freckles, height, weight and even things like sex.  However refusing these abortions could lead to much stricter laws that limit even further a woman’s rights.  A child with Down Syndrome will have a large impact on the mother and the father.   If we refuse these, some might say that we should not be able to abort for fatal disease.  If lack of economic stability is not reason enough to abort a fetus with Down Syndrome it later could be said that is is not reason enough to abort any fetus.  This would  force people to have babies they cannot provide for or give them up for adoption.
While it is important to protect the social lives of children with disabilities, this can not be a deciding factor in whether a parent is equipped to raise a child with Down Syndrome.  Society is not the main stakeholder in this situation and if something goes wrong, society is not the one that will suffer.  A family’s main concern should be the welfare and best estimation of what the child’s quality of life would be.  A family should make their decision based on those things and after that the societal implications can be considered.  If the implications are negative the family can choose to combat those implications in another way.  If they do this than they can still make the correct decision for them and positively affect their society.

Overall Conclusion

Just because it is ethically permissible to allow abortions for Down Syndrome does not mean that abortion should be the only option.  The government should offer programs to aid parents with children with disabilities if they cannot handle the cost.  This would ensure that a family would not have to worry about providing what their child needed and they could focus purely on loving and encouraging said child.  A family could also hire someone if they need help and they have the funds.  This not only relieve the family of some of the work but it also provides the child with another layer of protection and someone who can be with them even after their parents pass.  If a family feels that they can not give the child a good quality adoption should also be an option for them.  A topic I feel is relevant to this discussion and I would like to learn more about is the adoption of children with disabilities and specifically children with Down Syndrome.  I feel based on the results a parent may feel like they have to abort because their child would have a low chance of getting adopted and would have a low quality of life in the foster  care system or they would feel that they could find someone in a reasonable amount of time who could provide their child with a life they could not.

I believe it will be interesting to see how abortion rights evolve in the coming years.  Right now we can see a very strong push and pull between those who want stricter abortion laws and those who do not.  It is a very charged topic and both sides have some valid points.  Right now it is impossible to know which way things will swing but regardless abortion laws affect all Americans, both men and women.  It is an extremely personal and important decision for anyone to make and it will be fascinating to see how our laws and ethical views of abortion are shaped in the future.

Based on the various opinions found in research and reflection, I have concluded that it is ethically permissible to abort a fetus that has been diagnosed with Down Syndrome.  Any decision made in a child’s life is specific to the family they are in.  Each family will face different challenges and victories.  Each family has a different set of resources that they can rely on.  But in any case, we can not treat a family’s decision differently just because their potential child has down syndrome.  What really matters is their motives.  A parent’s choice to abort does not indicate negligence, discrimination, or a lack of love.  In fact, in many cases it is the exact opposite.  The parents recognize that a child would not have a high quality of life with them and makes the educated decision based on what they feel the child’s life would be.  We must respect that decision because more often than not it is the right one.  We should not have to rely on visualization as our only tool of acceptance.  People should be taught from childhood to be kind to those similar or different from them no matter how many people there are.

By Anjolie Charlot

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