Updated On Feb 25, 2022
This information is meant to be used for educational purposes to inform providers, patients, and genetic service delivery stakeholders about genetics policy topics. Sharing of information, resources, or policy statements is no way an endorsement of stated positions by NCC.
Genetic illnesses are caused by genetic changes in the structure of a gene or a region of the genome. Scientists think it may be possible to alter an individual’s genetic code to treat or cure the disease. It is possible that this could be done to an embryo, which might remove the disease from the fetus and prevent it from being passed to future generations. Or, it is possible that this could be done to an individual who has already been born with the disease, and genome editing could be used to change the genetic code in affected tissues.
Genetic technologies, such as genome editing, raise ethical questions. For example, people worry that these technologies could be used for genome editing for desired traits that do not affect health, like hair or eye color. How does one draw the line between permissible vs impermissible genome editing? Whose right is it to make these decisions?
For a more complete discussion of the ethics of genome editing, including references, please visit the National Human Genome Research Institute’s (NHGRI) website.
Legislation and Regulation
There are no laws or regulations that apply specifically to genome editing. At this time, genome editing is still in the realm of research, and thus, test subjects would be covered by general research protections. “The Web of Legal Protections for Participants in Genomic Research” is an article that summarizes and discusses these protections. In general, this type of research is largely subject to local oversight by institutional biosafety committees (IBCs) and institutional review boards (IRBs), which develop policies for the researchers at their institutions. A good overview of regulation can be found here.
The World Health Organization (WHO) has put together an expert advisory committee to develop standards for genome editing. Their report can be found here.
Are you interested in learning what your state’s government or the federal government are currently proposing for either legislation or regulation? Check out Legislative/Tracking system for up-to-date information and subscribe to our Twitter channel to get the latest updates in your pocket.
Organizations working within the genetics community (national genetic organizations, advocacy organizations, etc.) have published positions on genome editing. Explore these position statements below.