February 15, 2017
Should we use genetic editing to cure disease?
While the scientific community isn’t too keen on the idea of creating genetically enhanced babies, researchers do appear willing to normalize the practice of using genetic tools to fight inherited disease, according to a major new ethics report from the National Academies of Science, Engineering, and Medicine.
The report is the culmination of a 2015 National Academies summit that assembled genetic researchers, ethicists, legal experts and patient advocates from around the globe. Conference organizers surveyed attendees’ concerns around human "germline" editing, or genetic alterations to sperm, egg cells or embryos.With a host of research, moral, and legal questions around the issue, coordinators said at the time that researchers shouldn’t perform germline editing on embryos meant for generating a pregnancy just yet. However, they determined that modifying human embryos in the lab in the interest of basic study was appropriate.
The most recent report expands on the previous consensus and sets out stringent limits under which researchers could proceed down the road of germline editing. The report called for limiting the practice to address acute medical conditions for which no other option exists. It also calls for international collaboration, rigid regulatory and oversight systems, public commentary on decisions and long-term follow-ups of children who possess edited genomes. The report also said, at the moment, genome editing should not be used for human augmentation, like improving a person’s intellect or strength.
We Need to be Careful
"This committee is not saying we will or should do germline—heritable—editing. What we are saying is that we can identify a set of strict conditions under which it would be permissible to do it," Charo added. "But we are far, far away from being ready to try."
It should be noted that the report did not set policy, it only offered recommendations. However, it is regarded as a step toward establishing international norms for sensible progression of this powerful technology.
As soon as human genome editing has been proven effective and commercially viable, clinicians may set up shop in countries with lax regulations and potentially unsafe conditions to modify embryos and implant them in patients.
Speaking with Scientific American, Charo acknowledged that this practice, of going to loosely-regulated countries for risky or unethical medical procedures, already exists and is quite common.
“We are very much aware that medical tourism is a fact of global life now,” Charo said.
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