I’m watching the Netflix series Unnatural Selection right now (as of typing this, I’m watching episode 2 of season 1). It’s about genetic editing through CRISPR-Cas9 and it is fascinating. Whether you love or hate the thought of genetic engineering, the age of it is here, and I highly recommend that you watch Unnatural Selection to learn more about it. So far, the show is a bit biased toward the possible benefits of genetic editing, and less focused on the potential negative consequences (as I said, I’m only on episode 2), but it is interesting and insightful and thought-provoking, and I recommend it.
I’m sure there is just as much variety in the floxie community as there is in the community at-large regarding genetic engineering, and I certainly don’t think that my views on the topic are representative of those of the floxie community. However, I do think that my personal views on genetic engineering (and all things medical and science related) have been shaped by my experience with fluoroquinolone toxicity.
Fluoroquinolone toxicity is a man-made problem that has no man-made solutions. Many floxed people feel as if they are guinea pigs in an experiment that they unknowingly signed up for. (The post, “The Experiment: Notes from a Reluctant Lab Rat” by floxie friend Jean LeFebvre describes the feeling of being a “reluctant lab rat” of the medical/pharmaceutical industries.) People suffering from fluoroquinolone toxicity know what it is like to be severely negatively affected by an experiment gone awry. We also know what it’s like to realize that there is no way to undo or reverse the damage that has been done to us. It’s unpleasant, to say the least. As CRSPR-cas9 and other similar gene editing technologies are experimentally used on humans those experiment subjects (i.e. people) will likely suffer from side-effects and unintended consequences until the technology is perfected. As with all experiments, things may go wrong, and people may be caused to suffer or die because of the experiments. I suppose that people suffer and die because of current medical experiments too, but with these gene editing technologies the potential exists for future offspring, entire populations, or ecosystems, to be negatively affected. The thought of subjecting people (and other living beings) to suffering and death because of a genetic experiment gone awry is not something that I feel comfortable with at all.
Getting floxed, and subsequently researching the possible mechanisms through which fluoroquinolones hurt people, also made me realize how little we know about the human body. In “Side Effects and Unintended Consequences of Popular Pharmaceuticals” I wrote:
“The more I learned about the complex interactions occurring in my body, the more I realized that the number of unknown factors is far greater than the number of known factors. I realized that, as much as I wanted easy answers and quick solutions, there were none available. Because of the complexity of the human body, as well as individual differences in both genetics and environment, I doubt that easy answers will ever be available. Any one of the many complex systems within the human body can be studied for a lifetime without knowing everything about it. The multiple systems within our bodies are interconnected, difficult to comprehend, poorly understood and truly amazing. Human life is astoundingly, beautifully, mind-bogglingly complex.”
and
“I know that there are some very smart scientists out there; people who are far more intelligent than I, who have a much better grasp of biochemistry – so why aren’t the dangers of fluoroquinolones more well-known? Why aren’t the side-effects entirely predictable? Why did I have to figure out all of this on my own, without help from the physician who prescribed the medication or the physicians I saw post reaction? Sadly, I have come to believe that most physicians and patients alike don’t want to recognize the complexity of human health; preferring instead to believe in our own intellectual supremacy. And as much as I appreciate the scientists who are doing the work on which I have based my assertions, I don’t think that there is anyone who understands the complex biochemical feedback loops sufficiently to guarantee that there won’t be unintended consequences when disrupting part of the system with a pharmaceutical.”
That post was written several years ago, but I still believe those things – we know practically nothing about the human body. The mechanisms of drugs when they have their preferred effects are hardly known, much less the mechanisms of drugs when adverse-reactions are experienced. The complexity of a human is mind-boggling, and we cannot adequately understand the consequences of CRISPR-cas9 or other gene editing technologies.
Whether we can properly understand the consequences or not, the age of genetic editing is here. The technology is available, and it will be used. I hope that it is largely used responsibly.
Though I’m a cautious person, and the precautionary principle is high on my list of guiding principles, I am intrigued by the possibility that gene editing may have positive consequences for many people – including floxies.
What if Cystic Fibrosis, or Tay-Sachs, or Sickle Cell, or Hemophilia, or any of the other horrible genetic-based diseases can be cured through CRISPR-cas9 gene editing? That would be amazing – and few would argue that it wouldn’t be a proper use of this technology.
For floxies, what if there is a specific genetic marker that makes us susceptible to the horrible constellation of symptoms included in fluoroquinolone toxicity? What if floxies have genes that inhibit collagen production, or genes that make us unable to properly absorb cellular magnesium, or genes that make it more difficult for us to metabolize pharmaceutical drugs, or genes that make us more susceptible to autoimmune diseases? If those genes could be identified, and adjusted through CRISPR-cas9, and that could provide a cure…. well…. that would be incredible too.
I obviously have conflicting thoughts and feelings about genetic editing. There is a lot that could go wrong, and many of the things that could go wrong are far-reaching and astronomically consequential. I am inclined toward caution and saying “no” to attempts to solve far-reaching problems with gene editing (not that anyone is asking me). Too much can go wrong when you try to adjust the genes of an entire species.
But on an individual level, I have a hard time saying that we shouldn’t try to “fix” the genetic problems that are causing people pain and suffering. The technology exists, and if pain and suffering can be alleviated with it, I’m certainly not going to argue against that.
Ready or not, the age of genetic editing is here. Hopefully the technology will be used for good, not evil. We shall see.
*****
We shall see! I remember when atomic energy was made a public knowing. When asked about how will the long lived dangerous waste will be managed, they said; “It would be stored and we will come up with a solution. Man has bright ideas, learning, in tampering with all that is in nature. Yet, not knowing the human body any more than they know all the composition of a leaf. We have done much to the human existence, that we suffer for now. I hear your pain, I respect your wisdom. Yes! There are two sides to a coin, but wait; –what of the edge, and some with rough edges. You are blessed with your wisdom, it has come of age.
Thanks for your sharing….
Thanks so much for sharing your thoughts on the documentary and CRISPR-Cas9 gene editing in general. I also recently covered my thoughts on the subject in a series of articles: https://medium.com/medical-myths-and-models/the-case-against-crispr-gene-editing-part-i-6cb62078b18
In general, genes are not nearly as important as gene expression, and gene expression can be modulated by a number of things under our direct control.
A friend of mine and I tackled the question of whether gene editing technologies should be used in humans for Slate Star Codex’s 2019 Annual Collaboration Competition. I can share the link to that essay as well once it’s posted on the blog.
I have managed for 24 years with severe headache and nausea since May 1996 when I was overprescribed 60,000 mg of Cipro in 20 days. Everyday since I have wished for waking up after having a breakthrough. The negative impacts on Mitochondrion and permanent negative effects in our DNA are the most troubling to me. Who saw this train wreck coming?
I had a sinus infection, I am angry but have been trying to rebuild my life with meaning. The hardest part for me is that I am physically healthy, but I am in unbearably suffering pain.
I don’t think this has anything to do with genetics. I’ve done cipro a few times before and nothing happened. But this time it’s affecting him. maybe pharmaceutical companies may periodically sell poison
or 10 of 100 thousand boxes can be toxic.
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