For human genetics we need new stories .
I love science fiction. It might have even been futuristic stories that made me want to professionally become a geneticist. Science fiction starts with a single premise then through the process of storytelling investigates the human condition. As a medium science fiction asks how will life be different, and yet stay the same in a galaxy far far away or a future right around the corner. As a kid I watched GATTACA and remember thinking about how plausible that story seemed. I remember being livid about the treatment of poor Ethan Hawke though at the time I wouldn’t have recognized a gene if it had hit me in the face.
As I have become older I now appreciate that the future is both more interesting and more boring than what could possibly have been imagined. Likewise, as the science changes the science fiction follows suite. In the science fiction of the 60s and 70s overwhelming optimism predicted that replicators would serve our every whim. This was replaced by the science fiction of the 90s and early 00s which recognized the ecological consequences of consumerism. Maybe it is time for the sci-fi of genetics to also change with the times. The go to literary works on genetics were written decades ago. For example GATTACA was released in 1997 four years to the left of the figure which opens this article. It is like if we were to try to talk about the ethics of social media by using 2001 Space Odyssey.
A reasonable assumption has always been that genetic sequencing and modification would be so expensive as to be a tool limited to the super rich. That premise couldn’t have turned out to be further from the truth. In the past decade and a half genetics has decreased in price by an order of magnitude every two years. CRISPR/Cas9 leap frogs even over that and delivers us an enzyme that can copy and paste genetic information like a word processor. We always thought easy and convenient genetic technologies would take decades to invent, turns out they were present in nature already. The winners and losers of this genetics revolution won’t fall along economic lines but instead be distributed in new wonderful and equally disturbing ways.
I don’t mean to be dismissive of the ethical issues for or against genetic modification. GATTACA was powerful because in that far distant society human potential was distilled into G’s, C’s, A’s, and T’s. This could still easily happen and if anything is even closer to being plausible as genetics continues to decrease in price. We don’t have great markers for intelligence (yet) though the genetic changes associated with psychiatric disease, addiction, alcoholism, and violent behaviors have been mapped for populations. Those associations of course only work on average and intersect with social and environmental risk factors. A key detail that might be easily overlooked by the application committee of a prestigious college hoping to maintain a reputation of exclusivity. I should emphatically say that is an absolutely unethical idea. The thought however, still keeps me up at night because it is technologically plausible and pretty much legal for today’s high school students. Will the SAT soon come with a spit tube? Would all it take is one school shooting to persuade society to cross that line? We need stories of science fiction that address how genetics is here already.
Ironically in contrast, genetic modification as a treatment has been perpetually deferred. We know we could use this technology to cure disease, but we seemingly want to cross that line just a little bit later. Numerous professional organizations have stressed that before genetic modification can move forward it has to be demonstrated as unequivocally safe. I wholeheartedly agree with this assertion. At the same time though I am puzzled by, for example the NIH’s commitment of $0 to human germline genetic modification. If we want comprehensive safety data it is going to require an investment of at least some public funds, even purely for observation of what happens in the private sector. Actually, I am not that puzzled. The 1896 novel, The Island of Dr. Moreau, still seems to be guiding policy 120 years later.
The stories of science fiction reflect the hopes and fears of society in general. Deciding which disease we are and are not okay with being present in our children cuts to the very core of humanity. Professional organizations such as the American College of Medical Genetics and American Academy of the Sciences stress that ongoing public debate and engagement about these subjects is encouraged if not necessary for us to begin to move forward. Science fiction is the perfect vehicle for those conversations. We just need stories written that discuss how genetics is and not how we thought it would be last century.