Imagine going grocery shopping and picking up a can of beans only to see that the top had been dented. Seeing this, you instinctively put it back on the shelf and select a different can of beans. You do this, not because you think one has a better product than the other, but because you instinctively prefer the appearance of the undented can. Humans tend to use preference of appearance in day-to-day life quite often. This is a human default setting for how we view people. We tend to prefer people whom we think look ‘normal’ or like us. Unfortunately, this can affect the way we treat people. But what does this have to do with the topic The Normality of Modification? In order to feel more comfortable, we either must move past our preferences to accept all those who God so lovingly made, or we try to modify them to fit our view of what they should be. If this is not possible, we label them as ‘not worth it’. This attitude affects the world’s perception of those who are a bit different.
Dr. Jerome Lejeune, a pediatrician and geneticist, is known primarily for his discovery that there are people who have an “extra chromosome on the 21st pair that causes what was called “mongolism” and is now called Down syndrome.”[1] This discovery provided an explanation for people who had a particular disorder which oftentimes manifested itself in a cognitive disability. Dr. Jerome studied the way those with Down Syndrome lived and were treated, leading him “to think in terms of improving the lives of those with trisomy 21.”[2] Dr. Jerome feared that his method of identifying people with Down Syndrome would target them possibly in unpredictable ways. Unfortunately, Dr. Jerome was correct. Shortly after his discovery, it became normal to use prenatal diagnosis to single out those who possessed an extra chromosome as a way to eliminate a pregnancy deemed ‘imperfect’ due to the syndrome. Dr. Jerome, a faithful Catholic, believed in the sanctity of life from conception to natural death. He objected to this corrupt use of prenatal diagnosis and voiced his concerns over the use of prenatal diagnosis as a method to selectively exclude those who possessed this syndrome, in hopes that the lives of those babies might be saved from selective abortions.
The Church describes the moral implications of prenatal diagnosis in her teaching. In Donum Vitae there are two reasons such, therapeutic or eugenic. The Church states that prenatal diagnosis in itself is not immoral, but that intention and circumstances can make it immoral. In order for the prenatal diagnosis to be moral it must be carried out with the intention of it being for therapeutic uses only. This means it must be directed towards “[baby’s] healing, the improvement of its condition of health, or its individual survival.”[3] Prenatal diagnosis can be corrupted with the intention of using it for eugenic causes. By using diagnosis to screen the unborn to identify such things as seeing if your unborn child has Down Syndrome, the findings can then be used as a basis for whether or not you should abort the child. As Dr. Jerome began seeing his discovery used for immoral and eugenic practices, he dedicated the remainder of his life to searching for a ‘cure’ for Down Syndrome, in order to combat this eugenic mentality.
Today, the possibility of a ‘cure’ for Down Syndrome is closer to being a reality than ever before. CRISPR/Cas9 (or ‘clustered regularly interspaced short palindromic repeats’) is a genetic modification surgery that scientists hope to one-day use to cure the genetic anomaly of Down Syndrome as well as many more genetic disabilities. “The CRISPR/Cas9 system has become an efficient gene editing method for generating cells carrying precise gene mutations, including the rearrangement and deletion of chromosomal segments.”[4] This work implies that one day scientists will be able to treat an unborn child with Down Syndrome using the CRISPR surgery to eliminate the child’s extra chromosome, resulting in a ‘normal’ child with the proper number of chromosomes. As amazing as a possible ‘cure’ might seem, there is a moral question of just how the scientists will be able to provide assurance of the safety in using CRISPR. It also opens the question of what other effects this type of surgery might trigger.
The Church’s stance on embryo surgery is clearly set out in Donum Vitae. It states that therapeutic procedures are only moral “provided it is directed to the true promotion of the personal well-being of the individual without doing harm to his integrity or worsening his conditions of life.”[5] For example prenatal surgery carried out for the purpose of modifying an individual for cosmetic purposes only is immoral. Such things like changing the eye colour of the baby out of simple preference would therefore be evil. Thus, it seems that the up and coming ‘cure’ for Down Syndrome is moral as long as it is for therapeutic purposes only, for as soon as the intention becomes corrupt, the procedure itself becomes immoral.
This technology is very new and untried. Biochemist David Liu states that “since the era of human genome editing is in its fragile beginnings, it’s important that we do everything we can to minimize the risk of any adverse effects when we start to introduce these into people.”[6] There are two ways that the Church approaches this new kind of technology: through research and through experimentation. In this case the research avenue reduces the risk of doing harm to human beings, but requires studying and looking into all and any of the foreseen outcomes of this kind of surgery. The experimentation would be a more secure way of reaching the desired results, which can be achieved by substituting in the use of animals, such as mice, but others use embryos to further the eventual use of CRISPR. According to Nature publishing group, “Researchers conducted the first experiments using CRISPR to edit human embryos in 2015. Since then, a handful of teams around the world have begun to explore the process, which aims to make precise edits to genes.”[7]
According to the instructional document Donum Vitae, there is no ethical difference in the terms ‘zygote’, ‘pre-embryo’, ‘embryo’ and fetus’. Although every scientific term signifies a different stage of development, it is still a human being from conception all the way through until death. To quote Dr. Seuss, recently declared by the WOKE generation as not being politically correct) “a person is a person no matter how small.”
The Catholic Church discusses the morality of things such as ART (Artificial Reproductive Technology) in the instructional Dignitatis Personae. The Church describes any creation of embryos outside of their proper place (which is the conjugal act between a husband and a wife), as immoral. The use of embryos that are artificially created in the context of explicit use for experimental purposes only, is forbidden by the Church. CRISPR/Cas9 uses embryos that are deemed not suitable for pregnancy, as if this makes it ethical to use them for experimentation. One case describes this process in the following manner: “In some embryos, the editing was tried at fertilization, thought to be the best time for such attempts. Other embryos were edited when they were almost two days old. Cells then were analyzed at various stages of development to see how many had the mutation repaired.”[8] These embryos were made in a laboratory via ‘in vitro’ fertilization which, in Catholic doctrine, is intrinsically evil. In vitro means that they extract a woman’s egg and a man’s sperm and artificially inseminate the egg to produce an embryo. The Church states, “all techniques of in vitro fertilization proceed as if the human embryo were simply a mass of cells to be used, selected and disregarded.”[9] This is the procedure that scientists are using to produce embryos in the CRISPR/Cas9 experiments, and it is therefore morally evil.
Whereas Dr. Jerome believed in the dignity of every human life from conception, other scientists believe in a more, shall we say, selective choice of when a human being’s life begins, and they see an embryo only as a human being when, from the outset, they are intended for that purpose. In their view, embryos created in a lab ‘in vitro’ are not babies, because their purpose is specifically deemed for experimental purposes only. The Catholic Church simply does not share this flexible view regarding the dignity of human life. Hence, for faithful Catholics, the fertilization of embryos in a laboratory is an immoral act and cannot be supported regardless of any benefits that might ultimately occur from their use. This is based on the fact that these specifically created embryos do not, and are not meant to, survive these experiments. This clashes with the caveat of the Church, that “one must uphold as licit procedures carried out on the human embryo which respect the life and integrity of the embryo and do not involve disproportionate risks.”[10]
Catholics must stop and question whether the end really does justify the means. Does the loss of untold numbers of helpless babies really pale in comparison to the possibility of someday finding a cure for Down Syndrome? Would it really be worth it to stand by as our society continues to disregard the human person, a being made in the image of God? Does the good that might come out of CRISPR outweigh the bad that results from the research. Catholics believe in the sanctity of life from conception to natural death, and [we must all admit that these experiments are immoral. Life is still present in these lab embryos and, according to the Church Encyclical Humanae Vitae should be treated with dignity and not as a scientific throw-away specimen.
Dr. Jerome dedicated the rest of his life to a search for a cure for Down Syndrome because he acknowledged the beauty of God’s creative act seen through the life of people, even those with Down Syndrome. He offered “a different perspective than the world’s”[11]. Instead of viewing people with Down Syndrome as a burden, he encouraged parents to see their children as being “created in God’s image and made for eternity, like all of us. He assured them their children possessed special gifts of love and affection.”[12] Today, this uplifting view of those born with Down Syndrome, is only held by a small fraction of the world’s population. Instead, many terminate a pregnancy when an extra chromosome is detected. Society in general sees an unborn child with Down Syndrome as an unnecessary form of suffering, both for themselves as potential parents and for the child, and think that it is better to abort and try again rather than live their lives taking care of someone who is not ‘normal’ or formed exactly like them. They perceive the children the same as a ‘dented can of beans’ and they wish to put them back on the shelf in favour of an undented (unblemished) can of beans. Because this ‘can’ is harder to open, does not make it less worth the effort and cost. Pope Saint John Paul’s Apostolic Letter, Salvifici Doloris,6 reminds us, “‘suffering’ seems to be particularly essential to the nature of man.”[13]
In Dignitatis Personae, the Church makes it very clear that “the originality of every person is a consequence of the particular relationship that exists between God and a human being from the first moment of his existence and carries with it the obligation to respect the singularity and integrity of each person, even on the biological and genetic level.”[14] Thus people with Down Syndrome should not be disregarded simply because they might make life harder for the parents. Every person is called to carry his cross and are given the graces to bear it accordingly. The argument that parents with Down Syndrome children are called to embrace suffering, not to mention the suffering the children themselves endure, should not be disregarded and should be a reason to encourage the continuation of the search for a cure. Yet, the Church reminds us all about the need for suffering, as stated in the Salvifici Doloris, where it speaks on how we should not run from suffering, but instead embrace it as Christ Himself embraced the cross. “Suffering is present in the world in order to release love, in order to give birth to works of love towards neighbours, in order to transform the whole of human civilization into a ‘civilization of love’.”[15] There is no better way to come to love than through actions which result in the protection of the lives of people who themselves exude more love than the average person.
People like Dr. Jerome, saw the beauty and the purification that comes out of knowing and protecting those with an extra chromosome. Preferences which focus on the appearance of people can and have been hindering the love that should be extended to people with Down Syndrome. In today’s society people view Down Syndrome as a disease and simply focus on eradicating it. Places like Iceland, for instance, take great pride in having a country proclaimed as being almost 100% free from Down Syndrome, achieved through using Dr. Jeromes discoveries and applying the evil of selective abortions.
So as we wait in hopes of one day discovering a cure for genetic anomalies, we must show forth the Father’s love through how we treat people that are a little ‘dented’. Remember the words of Mother Teresa “Not all of us can do great things. But we can do small things with great love.” So go out into the world and love.
[1] “Biography.” Association les Amis du Professeur Jerome Lejeune, accessed November 6, 2019.http://www.amislejeune.org/index.php/en/jerome-lejeune/jerome-lejeunes-life/biography.
[2] “Biography.” Association les Amis du Professeur Jerome Lejeune, accessed November 6, 2019.http://www.amislejeune.org/index.php/en/jerome-lejeune/jerome-lejeunes-life/biography.
[3] Donum Vitae, I. 3. 1.
[4] “CRISPR/Cas9-Mediated Targeted Chromosome Elimination,” Genome biology (U.S. National Library of Medicine), accessed March 11, 2021, https://pubmed.ncbi.nlm.nih.gov/29178945/.
[5] Congregation for the Doctrine of the Faith, Donum Vitae, Vatican.va, February 22, 1987, I, 3. 3. http://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_19870222_respect-for%20human-life_it.html.
[6] Caitlin McDermott-Murphy, “How CRISPR Technology Is Advancing,” Harvard Gazette (Harvard Gazette, February 14, 2020), https://news.harvard.edu/gazette/story/2020/02/how-crispr-technology-is-advancing/.
[7] Heidi Ledford, “CRISPR Gene Editing in Human Embryos Wreaks Chromosomal Mayhem,” Nature News (Nature Publishing Group, June 25, 2020), https://www.nature.com/articles/d41586-020-01906-4#:~:text=Researchers%20conducted%20the%20first%20experiments,and%20are%20generally%20strictly%20regulated.
[8] Associated Press Oct. 29, Associated Press, and About the Author Reprints Associated Press, “Lab Tests Show Risks of Using CRISPR Gene Editing on Embryos,” STAT, October 29, 2020, https://www.statnews.com/2020/10/29/lab-tests-show-risks-of-using-crispr-gene-editing-on-embryos/.
[9] Dignitas Personae, Vatican.va, September 8, 2008, 14.1, http://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20081208_dignitas-personae_it.html.
[10] Donum Vitae, I. 3. 1.
[11] “Biography.” Association les Amis du Professeur Jerome Lejeune, accessed November 6, 2019.http://www.amislejeune.org/index.php/en/jerome-lejeune/jerome-lejeunes-life/biography.
[12] “Biography.” Association les Amis du Professeur Jerome Lejeune, accessed November 6, 2019.http://www.amislejeune.org/index.php/en/jerome-lejeune/jerome-lejeunes-life/biography.
[13] Salvifici Doloris, 2. 1.
[14] Dignitatis Personae, 29. 2.
[15] Salvifici Doloris, 30. 3.