As technology has advanced, so has the interest in gene editing. Scientists have been tinkering with genes in plants, bacteria, and mice. The next step would be altering human genes in order to pass it on to future generations.
After the National Academy of Science concluded that using Crispr for human genetic enhancement wasn’t going to happen, they set some boundaries. But the gray area was brought to light when a Chinese researcher edited the DNA of twin baby girls to make them immune to HIV/AIDS. After revealing many scientific errors and ethical violations, the scientist was fired and given a three-year prison sentence. This incident showed there needed to be stricter rules and the World Health Organization brought together a panel to create global regulatory standards for governments to follow. The National Academies commission was also created, an international committee with 18 members from 10 nations, brought together to create clear and explicit scientific standards for human gene editing.
In an article from WIRED they said, “after more than a year of work, the commission finally released its 225-page report – the most comprehensive and highly technical such document to date. It describes in great detail the types and quality of evidence that scientists must provide to show they’ve correctly edited an embryo before they can attempt to try it out on humans. It is, in essence, a road map for how to safely and responsibly get to clinical trials.”
Scientists are saying these rules are vital so these gene-editing tools don’t go awry and create unexpected mutations. There is still a vast amount of information for researchers to understand with embryo editing still being wildly unpredictable. Humans are already born with a few dozen mutations that don’t exist in their parent’s DNA, adding the possibility for unpredictable genetic variations and outcomes.
The commission was mostly focused on looking at scientific gaps in the gene-editing process and WHO is focusing on how society will accept gene-editing and how governments can regulate the process. These regulations are to emphasize between good and bad science, preventing people from doing any harm. If a pregnancy with an edited embryo occurs, it’s going to lead scientists into unknown territory.
Once accepted by a country, gene-editing can be used to treat serious monogenic diseases such as cystic fibrosis, sickle cell anemia, and Tay-Sachs disease. It would only be used when parents who carry this mutation have no other options for having a child without that same mutation.
The rules and laws for gene-editing are still ongoing as more gets discovered, stay on the lookout for updates from WHO and the National Academies Commission.