“I have often felt like films and books do a better job than academic bioethicists of bringing alive some of those other concerns and arguments about who we are as humans, who we are as parents, what it means to unconditionally love, and what is healthy, and what is good.” - Dr. Josephine Johnston (Slate 2022)
She gets it. That quote makes me feel so understood.
This week, I decided to take a deep dive into some of the articles I've saved in recent months and discovered a real gem from Slate that was published in August 2022.
Yes, I’m sorry, I’m never going to shut up about Gattaca.
Here’s an excerpt from the article above.
“In Gattaca, the seductive certainty offered by genetic determinism ends up being cleverly undermined when Vincent (Ethan Hawke), one of the few people born outside the pre-selection process, proves more than a match for his genetically perfect peers,” he writes in a 2016 article in the Conversation.
“The film’s ultimate message is that DNA is not destiny—which is precisely what science is now increasingly backing up. This being the case, allowing ourselves to be misled by science fiction is both an unfortunate and strange state of affairs.”
As the hype around genetic editing accelerates, it’s tempting for us bioethicists to beg for the brakes; however, it's crucial to acknowledge the tremendous strides that can be made in improving the lives of those who are currently facing health struggles.
Over the past couple of weeks, you may have heard the name Victoria Gray. Here is why she is extremely important.
In 2019, NPR wrote:
For the first time, doctors in the U.S. have used the powerful gene-editing technique CRISPR to try to treat a patient with a genetic disorder.
[…]
But it probably will take months, if not years, of careful monitoring of Gray and other patients before doctors know whether the treatment is safe and how well it might be helping patients.
Now, in 2023, NPR writes:
Almost four years ago, Gray became one of the first patients with a genetic disorder — and the first patient with sickle cell disease — to get an experimental treatment that uses the revolutionary gene-editing technique known as CRISPR.
Today, all of Gray's symptoms are gone, and she was in London last week to describe her landmark experience at the Third International Summit on Human Genome Editing.
Victoria Gray:
"The life that I once felt like I was only existing in, I am now thriving in," she told the assembled scientists, doctors, bioethicists and others. "I stand here before you today as proof that miracles still happen — and that God and science can coexist."
"I hope this will be available to everyone who needs it," Gray said after speaking and listening to the summit's other presentations. She has relatives who are still struggling with sickle cell. "It's horrible knowing that something is out there that can cure your disease but you can't access it."
If you’ve come this far in the newsletter, here’s a little present:
I have a silly, slightly embarrassing new TikTok page you may enjoy! Predictably, my first video goes into a deep dive on the brilliant season finale of The Last of Us that aired on Sunday. I actually got so much engagement on the video! Gained my first 12 followers! :D
The imaginative side of bioethics has always been my favourite, and I can't help but feel energized by the potential of exploring this creative concept further. Who knows where it might lead, right?
That’s all for now, friends. Wishing you a beautiful, cozy weekend! See you next week!
-Nipa
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