Mystery surrounds gene edited babies one year on

By Dr. Ananya Mandal, MDNov 27 2019

A year back Chinese scientist He Jiankui was in the news for all the wrong reasons. He had helped create the world’s first genetically edited human babies. After a year the world is still in dark about the whereabouts and health of the babies he had created and he himself has been not seen since January this year.

Dr. He was denounced as unethical due to the extreme experiments he undertook with the human genome. He had created a pair of twins whose genes were edited using gene editing tool – CRISPR so that the individuals thus created would never get infected with the AIDS virus.

3d illustration of CRISPR-Cas9 technology. Image Credit: Meletios Verras / Shutterstock

Dr. William Hurlbut, Stanford bioethicist said, “That’s the story — it’s all cloaked in secrecy, which is not productive for the advance of understanding.” He had revealed his experiments and its success at a Hong Kong science conference where he was called out as being unethical. The fear was that genetic tinkering of human embryos could lead to damage to other important genes and cause other diseases say experts. Some explained that these genetic modifications could mean transmissions of other genetic problems to future generations. Dr. Kiran Musunuru, a University of Pennsylvania geneticist recently published a book on the case of the genetically edited babies. She said, “Nothing has changed.” Hurlbut added, “I think we’re farther from governing this,” explaining that not regulations and ethical guidelines are in place yet to stop such experiments from happening again.

Dr. He was seen this January in Shenzhen at an apartment within his university from where he has been fired. There were guards at the building which could mean that He was under house arrest. The Chinese officials have since the announcement failed to locate the babies that He had created with the genetic editing. These twin girls were born to an unknown woman. One of the babies has all of her cells with the edited genes while the other is a mosaic. A mosaic baby has genes that are modified as well as genes that are not modified. No updates are available on the health status of the babies. The Chinese government officials have seized the embryos found in He’s labs which were recorded to be genetically edited by him. Musunuru said, “He caused unintended consequences in these twins. We don’t know if it’s harming the kids.”

He was assisted with his work by Michael Deem from Rice University in Houston whose name was in He’s paper. However Deem’s role in the genetically edited babies is being investigated. Hurlbut said, “Many people knew, many people encouraged him. He did not do this in a corner.” Musunuru said CRISPR is being tried in several genetic diseases and is showing promise. She added, “It’s moving forward slowly because it’s being done responsibly.”

Jennifer Doudna of the University of California, Berkeley, one of the scientists associated with the development of CRISPR, spoke out on this in a commentary that was published in the journal Science. She said that the World Health Organization (WHO) has issued regulations that such genetic editing of embryos is not to be undertaken in all nations. She wrote, “The temptation to tinker is not going away.” She said that the researchers are itching to alter the genetic makeup of eggs, sperm and embryos worldwide.

Kevin Smith, Abertay University bioethicist, wrote in the journal Bioethics, saying that CRISPR has developed and can actually help prevent heritable diseases. The benefits, he said, would outweigh the risks. He wrote about the regulations that should be in place to prevent parents from genetically editing their embryos. He added on the side that in vitro fertilization (IVF) was also once denounced by scientists and today over 8 million babies have been born using IVF. Benefit risks of the procedure should be considered he said. He wrote, “The longer we wait until commencing the HGGM (human germline genetic modification) revolution and moving towards a world of increased utility, the greater will be the quantity of suffering accrued meantime through genetically influenced disease.” Russian researcher Denis Rebrikov says that HGGM could soon be a reality. Checks would be in place assure researchers and bioethicists although not every one of them agrees it is good idea.

Meanwhile CRISPR technology has been used to create an experimental drug CTX001 that was used successfully to treat two patients – one with sickle cell disease and another with beta thalassemia major. Both of the patients have shown to have benefited from the gene editing approach.