On June 28, 2019, I wrote a blog grandiosely titled “The Ethics of Editing—Part I.” I probably intended to write Part II sometime soon, but alas, it skipped my mind. This blog is definitely not Part II. It’s about “editing” of a whole different nature. Genome editing, or genome engineering, or gene editing, is a type of genetic engineering in which DNA is inserted, deleted, modified, or replaced in the genome of a living organism. It’s not Gene Autry editing, and is not traceable to Gene Kelly, the dancer, or Gene Hackman, the author/actor. And because I’m only writing about the ethics of the thing, there’s no need to differentiate genomes from genes or DNA from RNA. Those are kissing cousins in the scientific world and live in sin in the writing world.
Here’s how gene editing might be understood in the writing world. “Imagine you wrote a long paper but then realized you mistakenly used an incorrect word throughout it. You could read the document looking for the word and replacing it, but there’s no guarantee you’ll catch them all. On the other hand, you might simply do a search and replace. That’s essentially what gene editing allows when it comes to the human genome — find specific damaged DNA and replace it with healthy DNA. This is known as gene editing.”
Writers know libraries. We used to spend hours, days, and sometimes weeks in them, pre-Internet. Back in those dark ages, we could not write without libraries. “If the library of humanity is DNA, genes are the stories, which is why mapping the human genome was one of the most significant scientific achievements in history. Scientists are learning every day about how genes work and how DNA mutations can change the genetic ‘story.’ That’s what’s so fascinating about genomics; it sits at the intersection of technology and health care . . . [and writing.] It focuses on locating and changing an individual’s genetic code in order to fight diseases and disorders. And it does this through the “Trojan horse” of a virus, which is particularly interesting considering our recent experience battling viruses.”
Scientists edit genes by making ennesy-teensy changes in the DNA of a living organism. Think about this in writer’s terms. Imagine editing a giant manuscript. You flip through hundreds of pages until you reach the once sentence you wish to alter, and then carefully change a single word. This creates only a tiny change in an enormously complex word document or, in this case, genome.
Everybody is editing genes these days, here and around the world. Here it is limited to plants and animals to improve animal welfare, increase productivity, or decrease the number of inputs. Gene editing is overseen by the federal government, so we writers can rest easy.
Of course, no gene editing is being conducted on human beings in the United States. That’s because gene editing in humans raises a large host of ethical concerns. The most frightening ethical issue centers around something called the “germline.” Genome editing changes made in the germline would be passed down to future generations.
“Bioethicists and researchers generally believe that human genome editing for reproductive purposes should not be attempted at this time, but that studies that would make gene therapy safe and effective should continue. Most stakeholders agree that it is important to have continuing public deliberation and debate to allow the public to decide whether or not germline editing should be permissible.”
True enough, but the test advocated above is to “allow” the public to “decide” whether germline editing should be “allowed.” From an ethicist’s perspective, that is flat wrong. The very notion of gene editing raises a host of ethical issues that cannot and will not be resolved by “the public.” The analogy would be to allow prisoners to decide how long their sentences will be. What about safety, equal access, consent, and honest brokering of resources. What about truth? And most importantly at this unique time in our history, what about COVID-19?
“To ensure that an ethical approach to research for a cure for COVID-19 is taken, the International Bioethics Committee and the World Commission on the Ethics of Scientific Knowledge and Technology issued a joint statement calling for an interdisciplinary dialogue among scientific, ethical, and political stakeholders. The joint statement does not describe specific treatment options, but it calls on the research community to work together to find a cure using bioethics, ethics of science and technology rooted in human rights.”
Only then will gene editing pass ethical muster.
I am an author and a part-time lawyer with a focus on ethics and professional discipline. I teach creative writing and ethics to law students at Arizona State University. Read my bio.
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