Does Testing Give an Opportunity for Parents to Make the Perfect Child? Is It Ethical?

By: Michelle E. Bello

April 20, 2020

Tag Words: #Genetics #Testing #GeneticTesting #Ethical #IsThereALimit #Amniocentesis #ChorionicVillusSampling #Embryo #Fetal #GeneticallyPerfect

Michelle's positivity and upbeat attitude is contagious. I know there are things that get her down, but you would never know it. If Michelle is in your classroom, she will be the first to ask questions, which is great, because then everyone else follows suit. Michelle is going to be that physician that is known for her bedside manner.

The field of genetics has been rapidly growing to include developing a wide range of new techniques. One area focuses on detailed testing available during pregnancy such as Perlman Syndrome Test and Pregnancy Loss Analysis, and the list goes on (Pediatric Genetics).

Continuous research has created technology to efficiently review genes and genomes. Many tests are also available to the public as an option to learn more about their genetics in various situations; for example, cases requiring medical history, finding biological parents, looking at family trees (ansetory.com), and health problems for future children.

Genetic testing on embryos and fetuses allows us to see which genes a child may inherit, as well as determine errors that could have occurred during the DNA replication process. No one is at fault; mutations just happen and sometimes they could have mental, physical, or other effects on the child. It is hoped that knowing this information would help parents prepare for the challenges that might arise after childbirth, but it also gives parents the choice of abortion.

These tests cannot predict the future with one hundred percent certainty, they are there to shine some light on the possibility that some complications may arise. Even if the test indicated a chance of abnormality, there is still potential for that child to grow up and lead a productive life without ever showing signs of the disabilities or complications the test originally warned about. One might question then: Are these tests giving leeway for parents to try and make the perfect baby? Is it considered inhumane to make a life stopping decision if there is just the possibility or higher risk of having a condition or feature that would only make them more unique? This is where the controversy lies between two views: Medical advances that are available to help people learn more in a situation and Ethical limits to when these medical advances have too much input on natural events. Genetic testing, as stated by the National Institute of Health (NIH), is a “type of medical test that identifies changes in chromosomes, genes, or proteins. The results of a genetic test can confirm or rule out a suspected genetic condition or help determine a person’s chance of developing or passing on a genetic disorder”. Explaining further that, based on the genes or DNA passed down from parents to offspring and the patterns of the parents’ genes alone, the test can help implicate what possible outcomes of various mental and physical conditions a child could have. When testing just the parents, there is a higher probability of variances, meaning the results might not happen in any of their pregnancies. Varying outcomes would depend on which genes the child inherits, as well as actually expresses when born.

Now there are methods to do genetic testing directly from the already conceived embryo which would provide more accuracy. Tests available and commonly used are chorionic villus sampling (CVS) and amniocentesis. Both tests are invasive and performed directly on the embryo; they can also lead to pregnancy complications, like a miscarriage (Hirsch). These tests show the genes the child actually inherits or also known as its genome. Though these tests show problems that could arise, they are still not definitive. They also lack the ability to show in what severity the complications would occur once the baby is born and starts to grow. Thus the available genetic testing, with obvious intentions of helping parents understand and prepare for what could come in the future, could lead to “ controversy about the moral status of the fetus and the use of selective abortion as a form of treatment” (Johnson).

How ethical is it to give the option of abortion to parents with a pregnancy that has shown possible unwanted outcomes? Should there be the option to terminate the baby when the results are not 100% guaranteed and there are other options available, like putting the newborn up for adoption? There are generally two sides to how people see these genetic testing options. Some think these tests are not only invasive to the fetus, but also can lead parents, as well as doctors, to think they can determine what makes a child perfect so as to not continue the pregnancy any further. On the other hand, people can see these tests as a chance to understand and prepare for some outcomes which may not result in a completely healthy baby. For example, Tim Friesen addresses the scientific standpoint of genetic testing as having “great potential for our society. It has the capability of improving and lengthening human life. If used in an ethical manner, genetic testing can eliminate unforeseen suffering and distress.” As a result of genetic testing, 90 percent of cases that test positive for the child having down syndrome end in terminating the pregnancy and aborting the fetus (Charlotte Lozier Institute). This is when you can see both sides of the argument. Many people with down syndrome grow up and live a functional life; having a child born with down syndrome does not need to be seen as a fault or problem. Anyone who knows someone with down syndrome would tell you that they are always happy and smiling; though they might look different, they are just as valuable as any other child. Additionally, this genetic defect has a wide range of severity, and this is where the controversy can also spring from. Every child should be viewed as valuable and the views of society should not suggest otherwise, nor cause the first solution to having a potentially “imperfect” baby be termination. Furthermore, let me emphasize once more how the results taken from the test only show the child’s genome but does not tell which genes will be expressed. Meaning which ones will be used and shown compared to which ones will be silent in the child’s life. Thus, it is important to give the parents a full understanding that this potential condition indicated from the test could be seen when the baby is born, later in life, or not at all. The test could show an increased chance of things like a possible heart condition, cancer, diseases, and more – but nothing can be known for sure until later development of the fetus. For example, an adult female is tested and told she could one day develop breast cancer. She does not have cancer now but is at a higher chance of developing it later in life because of her genes. There are some women that will continue living their life as normal as before knowing that there is a chance and will have this information in the back of their minds. However, you have women that upon hearing this news will decide then to get their breast removed to lower the chance of getting breast cancer; but still, in the end, could have never gotten the disease. There is no decision that can clearly be considered wrong, it is just depending on the person. It is the same when discussing prenatal genetic testing, some parents want to know while others do not. Additionally, of those that choose to have the test and receive the results, some couples will take the information and keep it in mind, while others will terminate the pregnancy without wanting to take any chances. Another controversy to providing the opportunity to make the “perfect” baby comes with in vitro fertilization (IVF). This is where individuals can fertilize the egg and sperm in a petri dish. This laboratory procedure is directed more for people who have a hard time getting pregnant or have experienced several miscarriages. However, just like in other cases, this helpful treatment has now taken a turn to allow us to pick and choose what embryo will make the best baby. For example, people doing IVF have the choice to do pre-implantation genetic diagnosis (PGD) performed on the embryo, which tests for over 600 rare genetic conditions (Embryo testing and treatments for disease). After reviewing the results, they are given the choice to continue with implantation; basically, choosing a child based on how they are suspected to develop based on the genome the embryo contains. IVF is not cheap by any means, costing on average $6,500 just for the lab materials and work that is required for the actual lab conception of one embryo; meaning this amount increases with the amount of fertilization done and does not include the price for doctor visits and other treatments that might have to be done (WINFertility). Also, generally insurance companies do not cover these medical advancements or tests, therefore making this choice an out-of-pocket expense. So, if a couple has the means to spare and is set on the perfect child, then these lengths could be taken. With this being said, what is stopping people from demanding more, to go even farther to the point where they pick which genes the unborn child would have. Allowing parents to pick sex, hair color, eyes, and more would mean no child would be uniquely made but rather pre-selected. When will tampering with science and interfering with the normal ways our bodies perform be enough? Science has given the world many opportunities, but because we can do more, does that mean we should? When is the limit and who will draw the line? Ultimately, everyone will continue to have an opinion, just as science will continue to be curious and attempt to better the lives of people with new discoveries. However, even though the initial reasoning behind certain medical procedures and methods were to help solve problems, society began to abuse the opportunities afforded by changing the views and purposes of the techniques. Ethical, as well as humane standpoints, should be reviewed in these situations to ensure that the goals of these advancements to help people are not being taken advantage of. I for one can see both sides, the scientific and the moral viewpoints. These techniques and options can help people who are struggling with conception, as well as prepare parents for any future problems with their newborns. However, I do not feel that people should dismiss a pregnancy because of test results indicating the potential genetic tendency. Nor allowing society’s views on what the perfect child is or even looks like take precedence over choosing an option while having the child’s best interest in mind. As a future medical professional, I can also say that science has allowed the world a multitude of opportunities to better life, but there has to be a balance and limit to every advancement keeping ethical and moral views in mind. Sadly, there are a variety of effective genetic tests that have been made available for the general public to use, yet by their use, many controversies emerge over the true intentions of those who request the test.

Figure 1: Embryo and Fetal Genetic Testing Infographic

The infographic was created to give society an easier way to get the same facts mentioned in the post above. A faster and more eye appealing way to learn scientific and statistical information. A baseline for people to start with then if more interest arises they can look further into the topic of embryo and fetal genetic testing.

The infographic was designed to give people an easier and faster time to receive the same information that was addressed in the Embryo and Fetal Genetic Testing post. The first section addresses the two common genetic tests that are available during pregnancy and what they entail. Then, the second portion lists the reasons why genetic testing on fetuses is usually conducted. As well as some quick facts and statistics about what results if genetic testing is done. Finally, the third panel goes into more specific genetic testing that is performed on embryos during IVF. This infographic is to have people start thinking about what comes along with genetic testing for embryos and fetuses; with the hopes that after they will be more interested to do further research on the topic.

Hyperlinks:

https://lozierinstitute.org/new-study-abortion-after-prenatal-diagnosis-of-down-syndrome-reduces-down-syndrome-community-by-thirty-percent/ https://www.hfea.gov.uk/treatments/embryo-testing-and-treatments-for-disease/

https://www.ndsu.edu/pubweb/~mcclean/plsc431/students/friesen.htm https://kidshealth.org/en/parents/genetics.html https://www.ncbi.nlm.nih.gov/pubmed/3402114 https://www.invitae.com/en/physician/category/CAT000016/#category-content-CAT000021 https://ghr.nlm.nih.gov/primer/testing/genetictesting https://www.winfertility.com/blog/six-facts-everyone-considering-ivf-know-pgs/