From Vision to Verisimilitude

By National Human Genome Research Institute (NHGRI) from Bethesda, MD, USA (CRISPR-Cas9 Editing of the Genome) [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

By National Human Genome Research Institute (NHGRI) from Bethesda, MD, USA (CRISPR-Cas9 Editing of the Genome) [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

In the film Gattacca, parents use genetic selection techniques to create the baby that they want, and typically, parents choose the embryo with the most physically fit characteristics [1]. The techniques present in this 1997 film are nearly at our fingertips in an even more revolutionary form. Our ability to pick and choose specific traits in our children using a new technology called CRISPR (Clustered regularly interspaced short palindromic repeats) is right around the corner.

You may have heard the term CRISPR being thrown around on the web and TV, but what exactly is CRISPR? CRISPR basically acts as a genome surgeon and can be manipulated to cut out any piece of DNA in a cell. Think of it as a pair of scissors that can cut out specific genes. This CRISPR technology has the potential to soon give us the ability to create “designer babies” — with CRISPR, parents will be able to pick every trait that they want in their children [2]. Sounds great, doesn’t it? We could eliminate Huntington’s disease. We could make sure that no one is born blind. We could knock out those genes that make young adults more susceptible to developing schizophrenia or bipolar disorder. The list goes on. OK, so what’s the problem? The problem is that we could even ensure that everyone has green eyes.  We could make sure that everyone has black hair. We could decide that no one should have genes that increase their likelihood of being overweight. Instead of embracing the uniqueness of each individual, this technology may kick us into the abyss of wanting everyone to be exactly the same. In this world, when you walk out of your house in the morning, instead of seeing people of different sizes, shapes, and colors, you would see clones that look as similar as ants in a colony.  

But let me take a step back. CRISPR technology will not necessarily result in this homogeneous picture. We have the option of setting strict boundaries to constrain this ever-advancing technology. It is of utmost importance that we set constraints now, before the technology outpaces our discourse and before physicians and policymakers create barriers for us.

At this point, you may be wondering what those boundaries should be. Scholars from the field of bioethics have proposed limits for this designer baby technology. Some, like Julian Savulescu, the director of The Institute for Science and Ethics, advocate for the concept of “procreative beneficence,” which states that parents should only choose traits in their children to ensure that each child has the best chance at his or her life [3]. This concept seems like a reasonable ethical framework, but we also need practical and specific guidelines that we can urge our physicians and policymakers to follow. Using their own interpretation of procreative beneficence, policymakers may decide that children should be born with blond hair and blue eyes, since this will ensure that race is not a factor that prevents children from attaining equal opportunities in their lives. This prospect is extremely problematic because many members of society will vehemently oppose the idea that race homogenization will result in the best futures for their children. Thus, we can see how varying interpretations of procreative beneficence may not give our children the lives that we think they should have. So, we need to clearly tell policymakers and physicians how we want CRISPR technology to be used to improve our children’s lives.  

How do we set specific guidelines? Let’s first try to determine cases in which we think this technology can and should definitely be used. Take the case of an embryo that we know will grow into a baby with anencephaly. As you may know, babies born with anencephaly typically do not live for more than a few days. Given the agony and all-encompassing sadness that parents face, it would be perverse to not use CRISPR technology to edit out harmful genes that contribute to the development of this illness. So, in cases where the child will likely die soon after birth, it is clear that new technology should be used to avoid this outcome. What about in cases in which individuals are likely to die in their young adulthood from ailments like leukemia and Huntington’s disease? People with these illnesses live with the fear that they will die at any moment without having experienced what they wanted in their lives. For those with Huntington’s disease, each violent muscle spasm they have is a solemn reminder that they have no control over their bodies, let alone their lives. For them, prospects of having a future family that most of us take for granted are wiped out of their minds because of the horror that they feel when they think of passing on this condition. Considering the devastating consequences of Huntington’s disease, we can agree that we should do everything humanly and technologically possible to eliminate a condition that so painfully affects those involved.

Thus far, we have established that we should use this technology to knock out genes that are directly related to life-threatening illnesses. But what about genes associated with mental and physical disabilities like Down’s Syndrome, depression, and blindness? The main issue at stake is that if we decide to use CRISPR here, we need to ensure that those who may be born with disabilities or acquire disabilities during their lives will still be given rights and the power to integrate themselves into society. In the world depicted in Gattacca, since gene-editing is rampantly used, people who have disabilities are part of an extremely small minority. As part of this minority, these individuals are easily pushed more and more to the sidelines of society, preventing them from integrating within surrounding communities. For instance, one character in the film, Jerome, is born without any disabilities but becomes paralyzed after a car accident. Because he ends up in a paralyzed state, Jerome doesn’t feel like he can be a part of his community — to the point that he sits alone in his house all day long. Although Gattacca is science fiction, it portrays problems we may face if we start to use CRISPR on disabilities. It would be ideal if we can ensure that those with disabilities will still have a voice in society no matter how small their group may be. However, considering that the current disability community is a large minority and is often ignored, it is likely that those who are still disabled after CRISPR interventions will be further marginalized by the rest of society.

Even if we are able to miraculously eradicate all disabilities (which would include eliminating everything that may result in these conditions, like pesky mosquitoes), we need to consider the fact that communities of disabled people have their own cultures and thus have their own place in society. When I talked to a fellow student who was born deaf, she said that her involvement in Ability, which is an organization on her college campus, has been integral in helping shape her college life and has allowed her and her friends to have regular conversations about their disabilities. Moreover, they have gained a greater appreciation for life as a result of their conditions [4]. Why would we ever think of snatching away these heart-felt discussions and beautiful opportunities to gain a deeper value for life? The general public should not force its stigmatized views on those with disabilities by trying to eliminate these conditions.

Some may argue that if we use gene-editing technology to eradicate disabilities, then we would improve the quality of life of many individuals.  But who are we to say that others’ lives need to be improved?  Just because we perceive that someone else’s life is negatively impacted by a condition doesn’t mean that it actually is.  In Gattacca, family members of the main character Vincent, who is considered to be an “in-valid” due to a perceived physical disability, attempt to dissuade Vincent from going into space because he isn’t physically fit enough. However, Vincent does not think that his physical state is a barrier. He thinks society’s condemnation of him is the real barrier. Thus, we should not use this technology to prevent disabilities because it only further propagates prejudiced views of those with disabilities.  

We have decided that CRISPR technology should be used against life-threatening diseases, but not disabilities. Now, we need to consider whether or not this technology should be used to create designer babies where every feature of embryos that has some kind of genetic component is handpicked by the parents, from their facial features to their level of aggression. I’ll admit that it might be nice for everyone to be as calm and composed as Mahatma Gandhi. However, if we do start selecting for specific traits in embryos, it may lead to a society where everyone is exactly the same in every way. Imagine that whenever you walked into a grocery store, everyone spoke the same way, bought the same things, and looked the same. The way we look, feel, and think comprise our individuality. It would be devastating to be indistinguishable from others. Our names might end up being different, but everything else would be exactly the same.  

To prevent this cookie cutter society from coming to fruition, I urge you all to pick up your laptops or notepads and write to your local congressmen and physicians. Tell them where we should draw the line with gene editing before they decide where to draw this boundary themselves. They may be influenced by lobbyists and pharmaceutical companies, so it is up to us to make sure that our physicians and policymakers make decisions that benefit us, not their own pockets or their own values. We should use CRISPR to alter those genes that cause pre-mature death, but beyond that, this technology will send us into a quest to homogenize mankind and eliminate those features that make us unique human beings.  




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