Despite the promise of the new gene-editing therapy known as CRISPR—despite the proven ways that it could be used to vastly improve the medical and healthcare industry, the scientific community continues to be divided regarding its use. While its applications for disease prevention are encouraging, for many scientists, the ethical implications and the unknown repercussions related to individual health remain a serious concern.
But let’s take a look at what those on the other side of the spectrum have to say about it—the patients.
According to representatives from numerous patient advocacy organizations who gathered this week to talk about possibly using gene editing technology to treat inherited diseases (such as cystic fibrosis, muscular dystrophy, or sickle-cell disease), the jury is still out on whether or not CRISPR and gene editing really are positive things.
Sharon Terry, the president and CEO of Genetic Alliance, has surveyed over 1,000 individuals in order to get their opinion on this topic. She asserts that personal views on human gene-editing range from “What is gene editing?” to “Hell yes!”
One person who is all for it is Philip Yeske, who is a science officer at the United Mitochondrial Disease Foundation, and whose daughter died from mitochondrial disease at age one. He stated that, as long as it is safe, then the ethical implications are of no real concern: “We feel these techniques should be made available to our affected community as an option.”
On the whole, though, individuals seem to be concerned about getting more information in order to make sound choices and form solid opinions.
“We’re a long way from a final opinion on any of these issues,” says Richard Hynes, a cancer researcher and co-chair of the national committee from Massachusetts Institute of Technology. “[It’s a] a discussion, not a finalization of opinions.”
To that end, the discussion focused on the need to learn more about the technology and the need to base decisions on facts—not the fear of the disease taking over or the fear behind altering what is widely regarded as “the source code of life.”
To do, or not to do? And who decides?
While the scientific and research communities continue to gather to discuss the ethics and policy that should back the technology, there is still very little representation from the patients themselves amid the panel.
And since the promise of gene-editing is so remarkable, these are important conversations that need to take place.
It could be used to help cattle forgo a painful dehorning process (current methods typically use a hot iron to burn the horns off). We could also increase corn and wheat yields in order to feed our ever growing population. It could also allow us to create designer babies, or to cure previously incurable diseases.
What will happen remains to be seen. But the important thing, of course, is for all individuals involved (everyone who is touched by agriculture or industry or medicine…namely, all of us) to have an educated opinion and a scientific and governing community that is willing to listen.