While her friends played at school, Alyssa lay defeated in a London hospital after unsuccessful chemotherapy and bone-marrow transplant treatments. She thought she “would … pass away” from Leukemia until her doctor proposed a revolutionary treatment - CRISPR. CRISPR allowed for genetic editing of a donor’s T-cells so they would attack all cancer cells in Alyssa’s body - and they did successfully. Had gene editing been considered unethical, and withheld from Alyssa, she would not be in school today. Stories like Alyssa’s highlight that, provided it is universally accessible, somatic gene editing is ethical because it allows people to thrive regardless of the conditions of their birth.

Ethics attempts to delineate what is “moral” (“right” and “acceptable”) to create a framework for peaceful coexistence. Religions like Judaism, Christianity, and Confucianism determine morality by the golden rule: treating others the way you want to be treated. To impartially apply the golden rule, it is necessary to make judgments irrespective of one’s circumstances and assess the ethics of gene editing through John Rawl’s veil of ignorance.

Rawls writes that we should assess the justness of actions (and whether to perform them) from the original position - a hypothetical state where we are unaware of our socio-economic, psychological, and physical state but are cognizant of the world’s realities. In the original position, people know that uncontrollable factors can determine our lives. Heredity affects our mental and physical health while our experiences shape our psyche.

In The Boy Who Was Raised as a Dog, psychiatrist Bruce Perry recalls Connor, a patient whose nanny took care of him while his parents worked. Unbeknownst to the parents, the nanny regularly abandoned the boy for hours at a stretch. Eventually, his mother found out, quit work, and became a full-time parent. Nevertheless, the neglect significantly impacted the boy’s mental and social development. If we knew we could be Connor, whose circumstances were beyond his control, we would want access to gene editing technologies, like CRISPR, that have the potential to remedy neuropsychological conditions by regulating the nervous system. Likewise, the option to cure genetic disorders like autism or schizophrenia would be readily appreciated.

Arguably, if widely used, people who are unwilling to profit from gene-editing, while others have, would be at a disadvantage. Though an understandable concern, there are communities today who reject technology, like Old Order Amish, yet the choices of a minority do not halt scientific advancement. Every innovation has its detractors, but they are not permitted to deny the opportunity of a better life to the masses.

Today Alyssa gets to learn about genes in biology class alongside her peers because of the ethical decision to grant her access to gene editing technologies despite her genetic predisposition.

If making a judgment about gene editing at the original position, using the golden rule, people would deem gene editing ethical because they would want to thrive, irrespective of the conditions of their birth. People want to live despite Leukemia, have children despite infertility, and develop despite traumatic experiences.

Photo by National Cancer Institute on Unsplash