Toward the end of last year, it was revealed that two twin girls with edited genes had been born.
This was the result of experiments conducted by a scientist named He Jiankui. At a gene-editing summit in Hong Kong, Jiankui presented details on what he had done which met with heavy criticism rather than support.
However, the existence of the research programme was known shortly before his public presentation. It was published in the MIT Technology Review followed by the Associated Press going public with the story.
Supposedly there are scientists that He spoke to about his plans but they didn’t believe he would actually go through with it nor did they know who to report it to because he was a scientist from another country.
Different countries have different laws and regulations regarding what type and extent of experimentation are allowed.
Nonetheless, this was not something that was considered ethical nor permissible in his country and thus Jiankui lost his position at the university and is prevented from doing further experimentation for a certain amount of time. They censored his work, even among social channels.
Jiankui claims that he altered a gene that encodes a protein that some strains of HIV use to infect cells. Essentially he was trying to give the babies immunity to HIV. This gene variation is found in a small percentage of individuals naturally.
Altering this gene in the babies could have an unintended effect on their health.
Although the protein is attacked with HIV infection, it helps the immune response with other infectious diseases. Thus the girls may be susceptible to them. Moreover, there is uncertainty as to what other consequences the alterations in their genes could have.
The wider scientific community is still trying to verify the validity of Jiankui’s claims. His actions have spurred a need for an international edict on what is permissible in the editing of the genome.
The World Health Organization committee is planning to meet this year to discuss guidelines on human-gene editing.
We are getting closer to the possibility of altering human genes. This could hopefully lead to genetically tailored therapy for diseases. Ideally, rather than have the onslaught of side-effects from medication, you are editing the body to heal itself and thus limiting the negative results.
This could have implications for possibly curing single-gene inherited genetic diseases.
Jiankui went about his experimentation the wrong way. It was done very secretively, without informing the parents of all the possible dangers to their children’s health, through altered documentation and falsification of others. The positive outcome of his efforts is the opening of dialogue within the international scientific community to set guidelines and rules on gene-editing. Hopefully, this would limit unethical practices and serve to allow experimentation to move forward in a positive direction.