The following is either a feel-good story with some serious ethical questions . . . or a story about serious ethical questions with a feel-good flavor.
Much has been made over CRISPR, a relatively new technology that allows scientists to modify DNA, the building block of life on earth. Most of the conversation has been around genetically modified foods, and whether that’s a) healthy b) legal or c) playing god. But at least then, we were talking about food.
But as NPR reported earlier this week, U.S. doctors have begun the first trials to treat patients with genetic disorders. And an African American sickle cell patient from Forest, Miss. received an infusion of edited genes in hopes of treating her sickle cell symptoms. The procedure was performed at the Sarah Cannon Research Institute in Nashville:
“It is just amazing how far things have come,” says Victoria Gray, 34, of Forest, Miss. “It is wonderful,” she told NPR in an exclusive interview after undergoing the landmark treatment for sickle cell disease.
Gray is the first patient ever to be publicly identified as being involved in a study testing the use of CRISPR for a genetic disease.
“I always had hoped that something will come along,” she says from a hospital bed at the Sarah Cannon Research Institute in Nashville, Tenn., where she received an infusion of billions of genetically modified cells. “It’s a good time to get healed.”
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.
Sickle cell affects millions of people around the world. About 100,000 are in the U.S., and most of them, like Gray, are African American. A genetic defect causes bone marrow to produce a defective protein that makes blood cells that are sickle-shaped, hard and sticky. The deformed cells get stuck inside blood vessels and don’t carry oxygen normally, causing a host of debilitating and, often, eventually life-shortening complications.
“It’s horrible,” Gray says. “When you can’t walk or lift up a spoon to feed yourself, it gets real hard.”
So where does the conflict come in? Some people question the ethics of CRISPR, indicating that in principle, it raises murky questions. If you could ‘custom design’ your child, should you do it? Or, if you could edit out a gene that increases your child’s risk for cancer when they’re 50, should you do it?
Then again, to see a brown face from small-town Mississippi as a beneficiary of this science . . . that’s a big deal. And I can’t help but wonder what Dr. Trevor Thompson, founder of the Sickle Cell Foundation of Tennessee, would think if he were with us.
Thompson, died from sickle cell complications in 2016, but was a champion for those with the disease until death. If CRISPR represents a possible end to the pain that sickle cell patients deal with, it’s extremely hard to ignore.
If you have sickle cell or know someone who does, do yourself a favor and spend seven minutes with this audio clip from NPR. It’s really good!