By Usama Abdul Karim
He Jiankui, born in 1984, is a Chinese biophysicist who held a position as an associate professor in the Department of Biology at the Southern University of Science and Technology (SUSTech) located in Shenzhen, China.
He completed his Ph.D. at Rice University in Texas, focusing on protein evolution, including CRISPR. During his postdoctoral research at Stanford University in California, he acquired expertise in gene-editing techniques, particularly CRISPR/Cas9.
In November 2018, the scientific community was rocked by news that he had created the first human genetically edited babies, twin girls who were born in mid-October 2018 and known by their pseudonyms, Lulo and Nana. The revelation sent shockwaves through both the scientific and ethical realms, sparking a global debate on the implications of gene editing technology. Why he performed this experiment? Formally unveiling the story at the Second International Summit on Human Genome Editing held at the University of Hong Kong (HKU) three days later, He Jiankui revealed that the twins were born from embryos genetically modified to be resistant to M-tropic strains of HIV. His team recruited eight couples, each comprising an HIV-positive father and an HIV-negative mother, through the Beijing-based HIV volunteer group known as Baihualin China League. During the in vitro fertilization process, the sperm cells were purified of HIV. Employing CRISPR/Cas9 gene-editing technology, they introduced a natural mutation known as CCR5-?32 into a gene called CCR5, which encodes a protein necessary for the virus to enter human cells.
Human gene-editing experiment He Jiankui’s experiment involved recruiting couples seeking to conceive, with the requirement that the man be HIV-positive and the woman uninfected. Using CRISPR/Cas9, he targeted the CCR5 gene, which encodes a protein crucial for HIV-1 cell entry, aiming to induce a specific mutation (CCR5 ?32) associated with potential resistance to HIV-1, as observed in the Berlin Patient.
He clarified that the girls still carried functional copies of CCR5 along with disabled CCR5 given mosaicism inherent in the present state of the art in germ-line editing. There are forms of HIV which use a different receptor instead of CCR5, and the work that He did could not protect resulting children from those forms of HIV. He employed a pre-implantation genetic diagnosis process on the edited embryos, removing 3 to 5 single cells to verify editing accuracy. Parents were given the option to choose between edited and unedited embryos. The twin girls were born by mid-October 2018, According to Jiankui, they appeared to be healthy in all respectsAt the time of their birth, the potential long-term consequences of the gene-editing on the children remained uncertain. Questions were raised regarding He Jiankui’s strategies for overseeing the well-being of the infants, addressing any potential issues that might emerge, and ensuring the confidentiality of both the children and their parents.The names of the children used in reports, “Lulu” and “Nana”, along with the names of their parents, “Mark” and “Grace”, are pseudonames. During the Hong Kong meeting, He Jiankui disclosed that another participant in his clinical trial was in the initial phases of pregnancy. While no official reports were released, it was anticipated that the baby would be born around August 2019. Confirmation of the birth came from a court ruling on December 30, mentioning the existence of three genetically edited babies. Subsequently, in 2022, the identity of the baby was disclosed as Amy.Chinese scientists called for building a special facility to care for and study the three children born with genetically edited genomes or ‘CRISPR Babies’.
They assert that errors could have occurred in the gene editing process. The researchers advocate for routine sequencing and testing of the children’s genomes to detect any potential abnormalities. However, this proposal has faced opposition from the global medical community, which argues that it could infringe upon the children’s privacy and pave the way for future abuses of power. Controversy after Experiment: He received widespread criticism. His research activities were suspended by the Chinese authorities on 29 November 2018, and he was dismissed by SUSTech on 21 January 2019. On 30 December 2019, Chinese court sentenced Jiankui to three years of imprisonment and a three-million-yuan fine.
He was released from prison in April 2022. He was recognized as one of Time’s 100 most influential people of 2019, under the category of “Pioneers.” However, he was variously mentioned to as a “rogue scientist”, “China’s Dr. Frankenstein”, and a “mad genius”. The CRISPR babies’ scandal served as a wake-up call for the scientific community, prompting calls for stricter regulations and oversight in the field of gene editing. It highlighted the need for a nuanced discussion on the ethical, social, and legal implications of emerging biotechnologies, ensuring that scientific progress is guided by principles of responsibility, transparency, and respect for human dignity.
Is Lulu and Nana still live? He claims to have maintained contact with the twins’ family, but would not say whether he was involved in their clinical follow-up or when he last saw them. “Lulu and Nana are living a normal, peaceful, undisturbed life and we should respect them,” he said. “We respect patient privacy and, for me, I put the happiness of the family first and the science discovery second.” I believe that both He Jiankui and the scientific community had valid points. Jiankui prioritized the happiness of the families over scientific discovery, stating that his intentions were to bring joy to the families and ensure the well-being of the babies. If the scientific community decides to punish Jiankui for his actions, they should also acknowledge his noble intentions and the positive outcome of his work in bringing happiness to the families involved.