What’s wrong with the cure for sickle cell disease?
By Arroy (AJ) Jacob, Web Editor
One day in my office, I was working away at my desktop when I saw the breaking news notification from The Atlantic in the bottom corner of my screen: “The First CRISPR Therapy Is Here.” I clicked on the article and was met with a myriad of more stories saying the same thing, “FDA Approves First CRISPR Treatment in U.S” (Times). I called over my colleagues who began hovering around my computer, and who, like me, were hungry for more validating information of what we had just cured. “FDA Approves First CRISPR Gene Editing Treatment for Sickle Cell Disease.”
Sickle-cell disease (SCD), or sickle-cell anemia, as described by the Centers for Disease Control and Prevention (CDC), is a genetic blood disorder that forces some red blood cells to take on a “sickle” C-shape, as opposed to the regular full, round, disk shape. Abnormally shaped cells die young, causing a constant shortage of blood. They can also clog blood vessels, preventing healthy blood to flow to their designated limbs, causing internal pain, infections, and stroke. This genetic disorder is statistically more common in individuals with Afro-Caribbean descent.
But Vertex Pharmaceuticals in Boston has changed our helpless view of this condition. By using the CRISPR-Cas9 (gene-editing) basics, they can modify a patient’s genes to code for more healthy red blood cells and prevent the formation of sickle-shaped ones.
This beauty of a treatment is informally known as “CASGEVY.” And although it sounds like, in this very brief moment, the world is looking up for once, we should always consider what the implications may be of accepting this treatment.
I turned to Rachel George and her experience so far studying genes. She is an international student at Mount Royal University (MRU) studying Biology, and she aims to become a research assistant with the Faculty of Science & Technology. She has had riveting conversations with her professors regarding CASGEVY.
Who and who cannot use ‘gene-editing’
“Even though it sounds awesome, this whole scenario opens up a lot of conversation about the people who are able to actually use gene-editing.”
George then refers to an opinion piece her professor had mentioned in her class regarding the topic. “We should remember that sickle cell anemia mainly affects the Black population globally. In the article that we read, there’s tons of evidence of systematic oppression against medically treating Black patients.”
Looking at the opinion piece itself, they say: “advocacy groups, researchers, healthcare organizations, and policy makers must remain committed to the principles of fairness, and to ensuring equitable access to this therapy, as well as education and community outreach initiatives to promote a broad and lasting impact for this therapy.”
George then expands on her own thoughts of society’s access to gene-editing.
Thinking more about people who can’t gain access to this treatment, she asks, “What about the people who automatically do? If this life-changing treatment is expensive, only the rich can use it. And if only the rich people can use it, then the prices will never go down, and even go up, making it even harder for people like us to save their loved ones lives.”
Familial (un)informed consent of gene sequencing
With the rise of gene-editing underway, indirectly comes the rise of gene sequencing (interpreting a collection of genes).
Popularized forms of gene sequencing come from organizations such as Ancestry.com or 23&Me for the purposes of identifying people’s ancestral heritages.
“In another class, we studied a review that talks about the ethics of gene sequencing. And if you’re going to talk about gene editing, you have to talk about gene sequencing.”
And looking at the review itself, it is a matter of who is getting sequenced.
The authors look into a phenomenon where individuals who wish to be sequenced for genetic diseases like SCD also require genetically matching their DNA to close relatives, potentially revealing genetic diseases about those individuals as well.
Upfront, it is not an issue. But George mentions that, “It’s until their genome sequences are released and used to identify those family members without them even knowing, that is an issue.”
The review itself states, “there is an emerging ethical consensus that researchers have greater obligations to address the concerns and protect the privacy of relatives when
information on family history is published.”
Although genetic information is widely conserved, cases of the police attempting to force Ancestry.com to release genetic info for the purposes of criminal investigations begs the question when informed consent is given for screening SCD.
“Is it possible for the police to get gene records from family members after screening for SCD? When most family members of patients with SCD are under constant systematic oppression with the police?” Rachel George says.
She finishes off by saying, “At the end of the day, people just want to live. You’d be surprised how easy it is for people to prevent that from happening. It’s in our genes.”