The Ethics of Gene Editing

In 1997, Ethan Hawke starred in the film GATTACA about a futuristic world where genetic selection and editing are used to create “biologically superior children.” The main character (an “in-valid,” born naturally) struggles to overcome the discrimination of inferior genetic status imposed upon him by the greater society. This film is two decades old and yet perfectly captures the concerns, consequences, and amazing opportunities of human gene editing.

Human gene editing is a tool poised to solve many of the world’s most pressing medical challenges. The first and fundamental tenet of engineering ethics is to place in paramount importance the health, safety and welfare of the public, and this technology can help eliminate devastating diseases that affect the lives of millions of people. Huntington’s disease and sickle cell anemia are both clearly defined monogenic diseases that could be treated with existing technology, except for the fact that a moratorium has been placed on human genome editing by the FDA in the United States. As Peter Parker so wisely remarked, “When you can do the things I can, but you don’t, and then the bad things happen … they happen because of you.”

In 1975, the philosopher James Rachels proposed the bathtub experiment where a man either chooses to drown a child in a bathtub or makes no move to save him upon finding him unconscious underneath the water. Rachels argues that these two situations are indistinguishable and that the man deserves the same punishment for both. Essentially: inaction is functionally identical to malefaction. Whether or not this is fair, it is undeniable that inaction confers some blame on the individual who failed to act. As such, if we have the technology to save lives and people are suffering as they succumb to potentially treatable illnesses, we must ask: is it ethical for engineers (and our broader regulatory systems) to prevent access to gene editing?

Regardless of the lifesaving applications, gene editing comes with many risks and considerations. As with any new technology, the most interesting discussions occur in pushing it to the limits. With the assumption that these procedures would be conducted safely and with consent, it’s generally seen as ethical to perform gene therapy for monogenic diseases or more complex foes such as cancer or Parkinson’s disease. This was the issue with the Chinese scientist He Jiankui, who illegally performed a gene editing procedure on human embryos to reduce their chances of getting HIV. The children were born in 2018, and the procedure was widely criticized for being unsafe and unnecessary given that they weren’t at risk for HIV and it may have introduced other dangerous anomalies into their DNA. Additionally, it hasn’t been confirmed that the mothers knew what was going on, that he had their informed consent was dubious.

Even if the procedure was performed ethically, it’s still worth considering what types of procedures are ethical. If we manage to isolate the genetic causes of Alzheimers or dementia, are we ethically bound to remove those diseases from the population? Though they cause a loss of function later in life, they don’t outright kill you. Additionally, environmental factors such as smoking or depression play a role in how these illnesses develop, I thought the link between genetic predisposition and external elements is not well understood. If we declare it acceptable to perform gene editing to improve “quality of life” or preemptive prevention, this wanders into concerning territory. Do neuro divergent people experience lower quality of life (because they live in a society that hasn’t paid enough attention to inclusivity)? Does this make it ethical to edit Down Syndrome or autism out of the population? In an article for TIME, Joel Reynolds reflects on the concern that gene editing for disabilities would have radically changed his brother, whose disability was an integral part of his character and personality. Do we risk creating an artificial race of people?

Each concession we make with regards to gene editing loosens the social and political stigma that holds the technology so tightly closed. This acceptance may be a positive thing, but it also emphasizes the importance of wise and thoughtful regulations imposed by governments and engineers alike to grapple with the complicated questions that arise from this technology. Ultimately, our genetic code is the most integral piece of ourselves. Even though gene editing has so many ethically concerning attributes, it also has the potential to improve the world and the lives of millions of people.

References

[1] Cohen, J. (2019, August 1). The untold story of the ‘circle of trust’ behind the world’s first gene-edited babies. Science. Retrieved November 5, 2021, from https://www.science.org/content/article/untold-story-circle-trust-behind-world-s-first-gene-edited-babies

[2] Killin, L. O., Starr, J. M., Shiue, I. J., & Russ, T. C. (2016). Environmental risk factors for dementia: a systematic review. BMC geriatrics, 16(1), 175. https://doi.org/10.1186/s12877-016-0342-y

[3] Ledford, H. (2019, June 19). CRISPR babies: when will the world be ready? Nature News. Retrieved November 5, 2021, from https://www.nature.com/articles/d41586-019-01906-z

[4] Li, H., Yang, Y., Hong, W., Huang, M., Wu, M., & Zhao, X. (2020, January 3). Applications of genome editing technology in the targeted therapy of human diseases: Mechanisms, advances and prospects. Nature News. Retrieved November 5, 2021, from https://www.nature.com/articles/s41392-019-0089-y

[5] Pawliuk, R., et al. (2001, December 14). Correction of sickle cell disease in transgenic mouse models by Gene Therapy. Science. Retrieved November 5, 2021, from https://www.science.org/doi/full/10.1126/science.1065806

[6] Reynolds, J. M. (2017, August 9). Genetic engineering means my brother would’ve never existed. Time. Retrieved November 5, 2021, from https://time.com/4892412/gene-editing-crispr-cas9-neurodiversity/

[7] Ribeil, J.-A., Al., E., Author AffiliationsFrom the Departments of Biotherapy (J.-A.R., Others, H. T. and, Others, S. R. Y. and, Others, R. L. G. and, Drain, P. K., E. B. Walter and Others, & R. S.G. Sablerolles and Others. (2017, May 25). Gene therapy in a patient with sickle cell disease: Nejm. New England Journal of Medicine. Retrieved November 5, 2021, from https://www.nejm.org/doi/full/10.1056/NEJMoa1609677

[8] Woollard, F., & Howard-Snyder, F. (2021, July 7). Doing vs. allowing harm. Stanford Encyclopedia of Philosophy. Retrieved November 5, 2021, from https://plato.stanford.edu/entries/doing-allowing/

[9] Yong, E. (2018, December 5). The CRISPR baby scandal gets worse by the day. The Atlantic. Retrieved November 5, 2021, from https://www.theatlantic.com/science/archive/2018/12/15-worrying-things-about-crispr-babies-scandal/577234/