It was 2020. I was wrapping up grade nine science with a solid 60 per cent, hoping that if anyone saw my failed tests in the recycling bin, it would contribute to an air of mystery about me. This reason was preferable to the truth, which was that I was sick and I had been for a while. I didn’t like many subjects, least of all science, with its academic rigour and air of superiority. I felt that science was a body of knowledge sealed behind textbooks for those people who were suited to learn. It was for the people who understood pharmacy through reactions; physiology through diagrams; and who are essentially healers armed with multi-coloured highlighters. 

In the same year, biochemists Emmanuelle Charpentier and Jennifer Doudna were studying bacterial immune systems. Bacteria defend themselves from invading viruses differently than humans. After an infection, bacteria store chunks of invading viral genetic material within their DNA for later reference, like a molecular ‘Wanted’ poster for future viral attacks. These bacteria store what they learned from the viruses in a section called the clustered regularly interspaced short palindromic repeats (CRISPR) — blank areas in bacterial DNA reserved for storing the viral DNA as it comes. If the same virus attacks a bacterium again, its immune system looks to the CRISPR region. If the bacterial immune system recognizes a match, the bacterium knows how to better defend itself and then chops up the foreign invader DNA, repeating the cycle. 

Hypothetically, if you controlled which DNA is stored in the CRISPR regions, you could manipulate the bacteria into inserting whatever you want into their genome. This would give you genetic scissors: allowing you to delete genes, activate them, and scrapbook them as you please. You could build your dream bacteria! A real-life, living thing! 

Now though, this is no longer hypothetical. The 2020 Nobel Prize in Chemistry went to Charpentier and Doudna for a tool that has the ability to rearrange and alter the human genome. It is called CRISPR-Cas9.

While all this was happening, I was still sick and reading a lot. I was content with being left out of science. That was before I came across Shira Erlichman’s poem Unwished For:

“I’m standing in my town’s ice cream shop when I notice them: the white couple smiling at me. The flyer they’re on is pink: international color of positivity in the face of infertility. But they have faith, they’re trying, haven’t quit wanting what they want, in spite of it all.

…

It’s not conscious, but somewhere inside a voice says: “Check.”

No criminal record. “Check.”

No history of mental illness.

I say, out loud to the paper: “I know this is different, Susan, Jim, but I would never wish Frida to not have been hit by that trolley. I would never look her in the face and say, ‘I choose to unmake you and your paintings and your horroring heart. I rob the woods of your little deer.’””

The facts of CRISPR-Cas9

CRISPR-Cas9 wasn’t the first gene modifying tool on the market, but it is the cheapest, fastest, and the most precise. Biotech companies are using it to solve issues in everything from agriculture to pharmaceutical development. CRISPR-Cas9 can work on humans in fertilized egg cells and it works insanely well. Any heritable factor can be permanently changed; from allergies to pathogenic cancer variants. We could possibly delete genetic diseases from entire bloodlines.

If this even is possible, our current understanding of genetics is not that robust — usage of CRISPR-Cas9 can have serious consequences. If DNA serves as your cell’s cookbook, then CRISPR-Cas9 is like an amateur baker, adding and subtracting ingredients. We don’t yet know what changing the recipe will do to the ‘final product.’ Off-target effects using this technology can make gene editing unpredictable and potentially debilitating for us.

There is ongoing research on CRISPR-Cas9, and there will be a day when this technology could be used on fully-grown humans — risks and all. Scientists and politicians must make ethical decisions on how to use it. Where do we draw the line?

I don’t have any answers on the usage of CRISPR-Cas9. I do, however, have feelings about it.

“‘She doesn’t want to suffer either,’ I peel the words open slowly, ‘but she’d rather be alive, than not suffer.’” 

Who decides what should be ‘fixed’?

Self-advocacy is a big word within conversations around disability rights advocacy. The need to champion your experiences so your needs are considered seriously. You are in invisible pain and no one believes you. You must learn how to make them believe you. 

In Unwished For, Erlichman writes about overhearing a conversation surrounding your existence in which you can hardly follow. She doesn’t write about gene editing; instead about not knowing what to feel or say when you have a problem people are trying to solve. 

I know CRISPR-Cas9 is revolutionary technology. If you asked me years ago whether I would have erased the parts that made me sick — error, risk, and all — I would have said yes. Now, I’m less sure about whether it was disease that made me miserable or an all-pervading preoccupation with succeeding in being ‘normal.’ 

I wouldn’t be my present self without what that sickness had taught me: adaptation, acceptance, and how to take care of myself. I don’t think removing a hurdle and making over it are the same thing. However, I don’t know if that justifies having someone else go through the same hurdles as well. 

No one currently has the answers, but I’m hoping the right people get involved in the questions. Good geneticists and ethical policymakers, but also young people who want a stake in their future. After following CRISPR-Cas9’s developments for some time, it becomes clear that so much of discourse around this technology has less to do with science and instead on social attitudes toward illness and disability. What does it mean for the core of us to be forever ‘fixed,’ especially at the risk of death from complications? 

This is all aside from financial barriers, non-heritable factors, legislation rollout, and a thousand related conversations essential to the discussion of any usage of gene-editing technology. Everyone is unsure of how a future with CRISPR-Cas9 will look — me especially. What I do know is that I don’t want to sit the conversation out. 

Erlichman’s poem ends with this: 

“I am not talking to a piece of paper in Herrell’s Ice Cream Shop. I am not invoking Frida. I am not naming an unloved ghost Claire. I’m licking my wrist of a smudge of strawberry cream, listening to the terrible Top 40 hit blaring overhead. I’m staring at the words No history of mental illness, trying to move my feet, and leave the world where this is taped up, natural as the moon. 

Will the Normal Rockwell of our time paint me standing here before it? In my jean cutoffs, finishing what’s left of a soggy cone, drugs in my blood, unwished for by strangers.”