Perfect Baby Or No Baby?

Perfect baby or no baby? Such is the dilemma presented at the doorstep of society. In an age where technology offers a plethora of open doors, the focus of society has shifted from merely surviving as a species to excelling – reaching the limits of nature and going beyond. Already, we exist alongside robots and cyborgs, so why not take the leap from natural to artificial selection and elevate our genetic standards by introducing designer babies, a generation of flawless, superhuman-beings?

Stemming from the prompt, this paper will address several issues: where we as a society stand now, the leap science is currently taking from genetic screening to genetic editing using technologies such as the CRISPR/cas9 system for example, and finally but most importantly the uses and issues surrounding this practice, as well as discuss the negative consequences of the practice of genetic editing. Naturally the emphasis is put on the latter despite this being the most theoretical aspect of the overall paper.

Firstly, it should be said that genetic modification and screening are separate concepts, but that can be treated in parallel, and we consider genetic modification the next step following the procedure of genetic screening. Genetic screening is the process by which DNA and the genome is analyzed in order to find any particularities, including mutations or predispositions for disease. Genetic modification is the process by which genes are favorably altered, currently, the preferred method for this is using the CRISPR/cas9 system which acts by replacing and/or altering segments on the genome (“What is CRISPR/cas9?”, 2016). A synonym to this and more often used expression would be genetic editing. The research question is as such: given the current consequences of genetic screening, should genetic editing become common practice, and if so, what will be the consequences of the practice? Throughout this position paper, the opinion held is that genetic modification beyond medical reasoning is a line that should not be crossed, as the consequences outweigh the pros with consideration as to where society stands today.

To start this paper off, the main advantage of genetic screening should be brought to light: by screening for diseases such as fibrodysplasia ossificans progressiva (FOP) or severe combined immunodeficiency (bubble boy disease), newborns could be spared from enduring a short lived and painful life. Better yet, some who may be destined for this outcome could eventually be genetically modified to avoid suffering from the disease. For example, specific proteins could be targeted and then modified to avoid the expression of the disease all together, a potentially feasible solution for cystic fibrosis, a very common genetic disease where the CFTR protein channel suffered a mutation rendering it inefficient, subsequently resulting predominantly in respiratory issues, but also digestive and reproductive ones as a result of the build up of mucus in the passages involved. A simple alteration to the defective genetic sequence could resolve the plethora of issues caused by this faulty gate and relieve the sufferer and their family from a lifetime of medical expenses as well as an increase in the lifespan to meet that of an average human being. Yet, when the practice goes beyond critical cases and encompasses disorders such as Down’s Syndrome or autism, where should the line be drawn? (Ishii, 2017).

As of today, genetic screening is already common practice. In the U.S.A, the Health Resources and Services Administration (HRSA) established a list of 35 conditions and disorders screened for in all states as of 2018, falling under three types of conditions on the Recommended Uniform Screening Panel (RUSP): Metabolic Disorders, Endocrine Disorders, Hemoglobin Disorders and ‘others’. This list encompasses what are considered ‘core conditions’ but a further list of secondary conditions to be screened for also exists. This example of a list serves to realistically illustrate the extent of modern-day genetic screening. Of course, while these lists are already quite extensive, they cannot possibly include every existing condition, especially for those that are extremely rare, revealing the limitations of the procedure.

Coming back to the research question, we should consider whether if a list of genetic modifications were to be created, which would be acceptable, and which will be considered off limits? The concept of genetically modifying embryos to produce a superior version of humankind sounds glorious yet, far from obtainable. Upon further reflection, it becomes evident that neither of these assumptions are true. A generation of beautiful babies with lovely blue eyes and luscious blonde hair, physically fit and intellectually superior – appealing to some, reminiscent of the Hitler Jugend to others. However, modern science is on the verge of making ‘Designer babies’ the reality of tomorrow.

Let us use Down’s Syndrome as a case study: Down’s Syndrome is classified as a genetic disorder where the affected individual has an extra or partial copy of chromosome 21 (National Down’s Syndrome Society, 2018). This syndrome is a relevant example to illustrate the implications of genetic screening on how likely a mother is to bring a baby diagnosed with the disorder to term. In A Disability Critique of the New Prenatal Test for Down’s Syndrome, (Kaposy, 2013) is exposed that despite the number having gradually decreased since the 1990s, the rates of abortion for children diagnosed with Down’s Syndrome still averages at around 67% percent of positive diagnoses using genetic screening methods in the United States. People born with down’s Syndrome are typically happy, functional and independent people. They are prone to learning disabilities, but often when given the right care are able to integrate regardless of these. So, why such high abortion levels? Who does this decision truly benefit – the mothers or the unborn children? Down’s Syndrome is a prime example of a genetic disorder that may very well go extinct if genetic screening become common practice, yet it should be made very clear that the only benefit is to existing members of society, avoiding them the risk of financial or other burdens. Also should be considered the possibility of false positives, where an unborn child has falsely been diagnosed with this disorder, only to find out that the child was not in fact a sufferer post abortion, by which time it is too late to give them a fair chance at life. Without forgetting those who will be lost to these false diagnostics, this example is used to highlight the subjectivity of what conditions will be ‘cured’ or ‘extinguished’ due to the use of genetic screening today, or genetic editing tomorrow. After all, if the cause of Down’s Syndrome is just an extra chromosome, this could easily be modified to ensure the birth of a ‘normal’, ‘healthy’ child.

Genetic modification and testing of embryos opens many doors: assessing the health of the future child, establishing chances of disabilities and/or deformities, but also knowing which attributes the child will be born with, and whether these should be changed or enhanced. While the consequences of this science have yet to be fully observed, the biggest issue is already apparent: will modifying these unborn children create the elitist society of tomorrow? If genetic modification became social practice, we would soon have a portion of the population considered to have all the desirable traits, including beauty, intelligence and most importantly good health, while those from families unable to afford the procedure would be lucky to only have 2 of those traits where good health would be explicitly reserved to the first category. Over generations, a clear divide will inevitably appear and potentially a classist society may reemerge. should laws be created to protect or ban certain procedures to ensure this does not occur? This topic opens up the juridical aspect of the dilemma. Suppose all embryos, regardless of the economic background of the parents – had their genetic makeup scanned for health-related markers. Information about which health issues this child may endure could become the source of bias for health insurance companies, where only those who were not considered a liability would be offered coverage (Zaret, 2016). Thankfully, this issue triggered the immergence of the ‘Genetic Information Nondiscrimination Act’ of 2008 – illustrating that an awareness of the biases knowledge of an individual’s genome exists as well as the immergence of future controversies. If and when genetic editing becomes common practice, acts similar to this one will have to be instated in order to protect against these biases people may start facing.

Despite the concerns expressed above, we should not. forget to consider the possibility that genetic editing as common practice could actually reduce medical costs, where preventative measures taken could avoid unnecessary medical expenses and thus relieve parents of the burden of these costs. Referring back to the example of cystic fibrosis, modifying the mutated genes in vitro could avoid the costs of a lifetime of physical therapies and medications, where the mean costs for a single year of treatment in the US is $15,571 (Van Gool, … , 2013), which when multiplied by the average life expectancy of thirty-seven years is very much likely to exceed the costs of the prenatal treatment. Thus, from a financial point of view and under the assumption that genetic editing is less costly than a lifetime of medical expenses, this solution may actually benefit people from poorer households who have a limited access to funds for these kinds of procedures from having to finance these. Nevertheless, this argument should again be limited to conditions and disorders that are predisposed to a lifetime of extensive treatments, pain and/or a short life expectancy.

Moreover, we should consider the link between the topic of this paper and the concept of eugenics (Ishii, 2017). Eugenics is defined as the practice or advocacy of controlled selective breeding of human populations to improve the population’s genetic composition (Merriam-Webster, 2018). However, when ‘controlled breeding’ is replaced with ‘modifying offspring’ we should ask whether the two concepts really differ. In the words of L. Darwin, “With this object in view, the first step to be taken ought to be to establish some system by which all children at school reported by their instructors to be specially stupid, all juvenile offenders awaiting trial, all ins-and-outs at workhouses, and all convicted criminals should be examined by trained experts in mental defects in order to place on a register the names of all those thus ascertained to be definitely abnormal.” In his essay, ‘the Need for Eugenic Reform’, Leonard Darwin, son of Charles Darwin argues that people considered undesirable should be kept on a register of those forbidden to have children, as to avoid furthering the undesirable lineage (Saunders, 1926). The issue of deciding who belongs on that register and who does not seems like a gross violation of ethics and freedoms. After all, who decides what traits are considered normal versus abnormal? Would the list be the same if written up by David E. Duke or Malala Yousafsai?

Finally, we should consider another very real consequence of this practice: we would be robbing humanity of many great minds. Had Stephen Hawking’s parents been aware of his inevitable development of ALS, would our understanding of physics and quantum mechanics be anywhere near where it is today? Motivational speaker, actor, author of eight novels about self-empowerment and founder of two non-profit organizations, had Nick Vujicic’s parents had the opportunity to either genetically edit him to have limbs or aborted him, from where would have stemmed his successful career but more importantly how would he have impacted millions the way he does today? Even John F. Nash, the mathematician known for Nash equilibrium suffered from Schizophrenia as of 1959 and still managed to publish 23 scientific studies by 1993 (Wikipedia). Going even as far back as to the well known musician and composer to Bethoven himself figures with disabilities have offered major contributions to society regardless. These figures have been keystones to the healthy development of our society, and had every child destined to be edited or aborted due to disorders, mutations, or likelihood of future suffering had endured that fate, it can be said with absolute certainty that society would not be where it is today.

In line with the thesis statement, this paper explored both the pros and the cons surrounding the issue of genetic screening and editing.

First was introduced the primary advantage of genetic screening, which we concluded was the ability to foresee which genetic conditions a fetus may have inherited, and to make decisions on whether or not to bring the child to term based on the quality of life it is promised. Leading to the second argument, we argued that devising a list of which conditions are or not worth living with, or should or should not be altered is unethical due to the completely subjective construct of what is ideal using Down’s Syndrome as an example to illustrate the argument. From there, we continued on to discuss the societal and juridical aspect of the dilemma, elaborating on how such a practice may lead to a new form of segregation, and hypothesizing on what measures should be taken to avoid such an issue. There on, the second argument in favor of these practices was approached, suggesting that such a practice would actually be beneficial and help families avoid a life time of financial burdens brought on by genetic conditions that could have been altered prenatally. Our penultimate argument stated that genetic testing and screening could be compared to a form of eugenics and population control, a subject many would consider taboo to be in favor of. Finally, we approached the issue from a slightly philosophical point of view, asking where society would stand today if it were not for the minds of those we are now considering altering, or removing from society.

Until solutions for the secondary effects of genetic screening and/or genetic editing are set, the negative consequences of these tests will inevitably outweigh the positive prospects preached by the advocates of that field. Thus, if genetic editing becomes common practice in the next few decades, it should be limited purely to those predisposed to lethal and/or painful conditions, potentially extending to mental illnesses, and should not be carries out for aesthetic and enhancement reasons. Drawing this line is crucial to ensuring a fair society and avoiding a new type of segregation, but also in ensuring the survival of minority groups. Until society is capable of accepting the current minority groups – disabled, diseased or simply poor – with whom we co-exist, we should not be given the power to create new ones or to extinguish the old.

REFERENCE LIST:

A. M. Carr Saunders. (1926). The Economic Journal, 36(143), 483-486. doi:10.2307/2959810

Eugenics (2018). Retrieved from: https://www.merriam-webster.com/dictionary/eugenics

Genetic Information Nondiscrimination Act of 2008 (2005, April 6). Retrieved from

https://www.genome.gov/24519851/genetic-information-nondiscrimination-act-of-2008/

Ishii, T. (2017). The ethics of creating genetically modified children using genome editing. Current Opinion in Endocrinology & Diabetes and Obesity, 24 (6), 418-423. doi: 10.1097/MED.0000000000000369

Kaposy, C. (2013). Retrieved from https://www.researchgate.net/publication/260268468_A_Disability_Critique_of_the_New_Prenatal_Test_for_Down_Syndrome

What is CRISPR/cas9? (2016, december 19). Retrieved from https://www.yourgenome.org/facts/what-is-crispr-cas9

Zaret, A. (2017). Editing Embryos: Considering restrictions on genetically engineering humans, UC Hastings Law Journal, 67 (6), 1805-40. Doi: