Written for Dr. Bailey’s Gene Editing course at the JHUSPH March 16th 2021
Both the scientific and social implications of CRISPR are highly debated topics in the scientific community and world at large. The ethics of creating GMOs (genetically modified organisms), possible risks, and ableism are some of the most important points of discussion. As a researcher with a medical background and a disabled woman, I am deeply entrenched in these issues personally and enjoy studying the literature on new techniques while retaining the proper ethics involved in genetics.
GMOs or genetically modified organisms are much simpler and more common than the average person may assume; they are defined as a living being with some form of its DNA altered from what may occur naturally (WHO 2014) in this case, with CRISPR. And although there have been few studies to suggest that eating genetically modified foods are bad for you, we see them every day from seedless fruits to larger meat products. More importantly, GM foods are critical in their role of preventing widespread child hunger such as the case of Vitamin A deficiency in Southeast Asia and Africa being fought off with GM rice where foods with proper nutrition is scarce (Connell 2016). The problems that we do know about, however, are largely due to the reduction of genetic diversity. Genetic diversity occurs naturally from sexually reproducing organisms — like many animals — in order to vary traits passed on; this is important in assuring the survival of a species from inheriting immunity and susceptibility to diseases (Landry 2015). Some other benefits and risks that may be weighed more heavily than others in utilizing GMOs are biofuel, bioremediation (using microorganisms to clean oil spills for example) (Philip 2015), gene drive (modifying to prevent an organism from carrying disease or dying out), genetic violent tendencies, prevent aging, addiction, de-extinction, creation of new animals, or bioweapons (Bailey 2021). Some questions regarding these issues and who decides what is and is not ethical is still up for debate. But the use of CRISPR in genetic treatments of disease is already happening and priorities & opinions of its use are still largely debated in the scientific community.
Another topic of debate in the use of gene editing with CRISPR is treatment of disease. One success is the use of CRISPR technology in Duchenne Muscular Dystrophy patients (DMD). Upon speaking with Bryan Deuber who works at Sarepta — one of the few companies with several DMD treatments in the metaphorical pipeline — I learned that there are not only clinical trials for DMD patients but so far as an on-the-market treatment for exon deletion 45 (Deuber 2021). These treatments aim to halt or reduce the progress of the muscular degenerative disease, but largely the trials are aimed at infants and young children to prevent disease progression to use of leg braces, wheelchairs, and so forth. However, DMD adults are also lives worth saving but often fall by the wayside.
This topic leads into one of the most contentious topics regarding CRISPR which is eugenics and ableism. One of the first lessons that I learned when I began participating in the online community was that disability is not a bad word; it is the word used in laws to obtain access and rights. But another phrase that people seem to think is a good choice is “quality of life” which I believe — as many do in the disabled community — to be subjective. For example, a genetic, intellectual, and developmental disease like Down syndrome is often talked about for Trisomy 21 — too many copies of the 21st chromosome — causing many health complications. While it is common for those with Down syndrome to have seizures, heart and dental problems, it is also all-too-common for those with the disease to be unable to speak for themselves about their own quality of life (Mayo Clinic 2018). An interview with several Down syndrome persons on YouTube talked about the common questions people ask them or discuss behind their backs, and the most noteworthy, appropriate quote for this discussion was “The only thing I suffer from is bad attitudes.” (BBC Three 2016). One paper on CRISPR use and Down syndrome is explicitly titled Down syndrome: A curative prospect? (Rondal 2020). Down syndrome people deserve the respect and consideration when discussing their own possible treatments, and it seems this is seldom discussed.
On a more personal note, I have neurodegenerative hearing loss in one ear, and it is unknown if it is genetic or a birth defect, much like many other deaf people and their hearing (Centers for Disease Control and Prevention 2020). If CRISPR were to be used to “cure” deafness, many in the community would likely opt out because our rich history, culture, and —unfortunately also — discrimination we face everyday. It’s taken many years for me to accept who I am and learn to adapt to a hearing world, but why should I feel like a burden when the pandemic has shown us that simple accommodations like captions, video calls vs. phone calls, and sharing files virtually can be done with relative ease for hearing people?
All in all, these aspects of ethics using CRISPR are still highly debated topics. GMOs have many benefits and risks involved in their use, consumption, and global impact. The risks of CRISPR use in genetic disorders are also a prominent subject, particularly in DMD patients. Finally, as a society we must consider the value of all human life regardless of outside perceptions and personal bias about what we may believe to be the best quality of life and how to remedy that with science and social behavior. While this area of genetic therapy is often difficult to talk about, I believe that with knowledge and compassion, science and social values can both be met in the middle someday.
Bailey, S. 2021. Gene Editing, therapy and Manipulation. Online Course at Johns Hopkins
Bloomberg School of Public Health.
BBC Three 2016. Things People With Down’s Syndrome Are Tired of Hearing. YouTube.
Centers for Disease Control and Prevention (CDC) 2020. Genetics of Hearing Loss.
Homepage, What is Hearing Loss? Retrieved: https://www.cdc.gov/ncbddd/hearingloss/genetics.html
Connell, C. 2016. Nobel scientists: Genetically modified foods save lives. Share
Deuber, B. 2021. Interview. Sarepta Marketing Team.