by Jason Lo Hog Tian.
In November 2018, Dr. He Jiankui announced the birth of the first babies with genomes edited using CRISPR technology.1 This was met with mass controversy throughout the scientific community and sparked a debate about the ethical considerations of altering fetal genomes, all of which was covered in a viewpoint article in our Summer 2019 issue entitled The Chinese CRISPR Babies: Are We Ready for Fetal Genome Editing? Now, over a year later, this scandalous chapter draws to a close and we usher in a new era of research using the CRISPR technology.
Dr. Jiankui used CRISPR, an extremely precise gene editing mechanism, to remove the CCR5 gene from twin girls to make them resistant to HIV infection.1 The power of CRISPR to alter genes has the potential to cure genetic diseases and create new medicines, however researchers are still investigating how it works and the possible adverse effects.2 These unknowns explain the shock within the scientific community when Dr. Jiankui announced that he had already used CRISPR to alter the fetal genome. In response to this scientific misconduct, the World Health Organization (WHO) convened an expert panel to develop oversight and governance around fetal genome editing and Dr. Jiankui was fired from his university position and underwent criminal investigation.3
In December 2019, Dr. Jiankui was sentenced to three years in prison for “illegal medical practice” and fined the equivalent of $430,000 USD.4 He has also been banned from working with human reproductive technology and applying for research funding. Two of Dr. Jiankui’s colleagues have been handed lesser prison sentences and fines.4 The swift sentencing shows China’s position on unethical research conduct and demonstrates their commitment to promoting responsible practices. The convictions also send a firm message to other researchers conducting gene editing experiments that any other missteps will not be tolerated by the greater scientific community.
The WHO expert advisory committee convened in March 2019 to address this controversy and provide regulations in anticipation of other studies that will inevitably explore similar techniques. The panel delivered an interim recommendation that “it would be irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing”.5 In August 2019, the committee held a second meeting and approved a global registry to track details on clinical trials involving human genome editing.6 Clearly, the consensus is to take a conservative approach and the WHO advises that regulatory authorities refrain from approving research involving human germline genome editing until ethical and social repercussions can be evaluated.
Despite the strong position of the WHO, researchers remain undeterred and continue to develop inventive ways to use CRISPR. Most recently, Denis Rebrikov, a Russian biologist, has started editing a gene linked to deafness in human ova, however the Russian Ministry of Health has stated that they fully support the WHO’s position against making changes to the human germline.7 While this sounds eerily similar to Dr. Jiankui’s experiments, Rebrikov has been candid with his research plans, declaring his intentions to the world and inviting each of us to consider the ramifications of editing the human genome.
The urgency with which global regulations regarding human genome editing must be reached cannot be understated. While understanding the social and ethical implications of gene editing seems like a daunting task, promoting a conservative approach to conducting studies and an open culture about research plans among scientists is a step in the right direction. We must all be held accountable for using CRISPR responsibly and not regard it as a callous cutting tool, for once we make changes to the human genome, there is no going back.
- Cyranoski D, Ledford H. Genome-edited baby claim provokes international outcry. Nature. 2018;563(7733):607-8.
- Plumer B, Barclay E, Belluz J, Irfan U. A simple guide to CRISPR, one of the biggest science stories of the decade. Vox. 2018.
- Cyranoski D. The CRISPR-baby scandal: what’s next for human gene-editing. Nature. 2019;566(7745):440-2.
- Cyranoski D. What CRISPR-baby prison sentences mean for research. Nature. 2020;577(7789):154.
- World Health Organization. Statement on governance and oversight of human genome editing 2019. Available from: https://www.who.int/news-room/detail/26-07-2019-statement-on-governance-and-oversight-of-human-genome-editing.
- World Health Organization. WHO launches global registry on human genome editing 2019. Available from: https://www.who.int/news-room/detail/29-08-2019-who-launches-global-registry-on-human-genome-editing.
- Kravchenko S. Future of Genetically Modieifed Babies May Lie in Putin’s Hands: Bloomberg; 2019. Available from: https://bloomberg.com/news/articles/2019-09-29/future-of-genetically-modified-babies-may-lie-in-putin-s-hands.