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You may have recently seen one of the following headlines saturate the airwaves of a scientist in China challenging global ethical and procedural standards by using CRISPR technologies and harnessing real human experiences:
Why is this a big deal?
Bioethicists and scientists around the world praise the work of Shenzhen researcher He Jiankui as unethical, defying current standards and employing CRISPR-cas9 technology to alter reproductive DNA.
He claims that twin human babies are born of this – the first in the world. But by choosing to report his secret searches on YouTube rather than through traditional channels such as peer-reviewed journals and avoiding independent verification, nothing can be confirmed outside of his words. During the process, he created a firestorm with many regulators opening investigations.
From the point of view of bioethics, the scientist is in a very hot water. He betrayed a thoughtful and collaborative science that prevented future advances by creating mistrust of the transparency of science and the actions of scientists. More importantly, the twins that he claims to have "genetically modified" may well be at extreme risk, given the limited knowledge we have and the possible negative impact that this genetic modification can facilitate.
The potential of this technology lies in the ability to prevent or treat a serious illness. The early use of this type of virus in human experiments such as this one is due to the fact that the modified gene (s) are not limited to this person to repair a disease, but are rather passed on to future generations. In addition, by disabling one aspect, we can activate another aspect whose influence is unknown.
The current limited use of gene therapy, for example, in adults or children, affects only this individual and his life-threatening serious illness – when all other pathways are exhausted. In the rare cases of use in these situations, the risks of side effects of treatment, which may be significant, are compared to the probably fatal natural course of the disease.
Even CRISPR co-founders call for an immediate moratorium on human trials
Feng Zhang, one of the co-inventors of the CRISPR gene editing process, called for an immediate moratorium on the use of the technique in human babies, pointing out that the risks outweigh the current benefits . (1)
The scientist justifies his actions because he used the technique to create a baby resistant to HIV infection. Almost everyone else in the scientific community supports, since there are already ways to avoid HIV infection, treat it and prevent that choice from being passed on to the infant. . during the examination of the guidelines. Since we do not know what harm this can cause to children and their children, the governing body sees its efforts as an abuse of science and our current understanding.
Zhang's official statement printed in Review of MIT technology bed:
"While I appreciate the global threat posed by HIV, at this stage, the risks associated with modifying embryos to eliminate the CCR5 seem to outweigh the potential benefits, not to mention that the removing CCR5 would probably make a person much more likely to be exposed to West Nile virus. Virus. Equally important, there are already common and highly effective methods of preventing HIV transmission from a parent to an unborn child.
Given the current state of technology, I am in favor of a moratorium on the implantation of published embryos, which seems to be the subject of the CCR5 trial, until we first define a set of thoughtful security requirements.
Not only do I consider this risky, but I am also deeply concerned about the lack of transparency surrounding this trial. All advances in medicine, gene editing or any other means, especially those that impact vulnerable populations, must be carefully and thoughtfully tested, discussed openly with patients, physicians, scientists and other members of the community and implemented fairly.
In 2015, the international community of researchers said that it would be irresponsible to proceed to any germ line editing without "general consensus of society on the merits of the proposed application". consensus statement International Summit on Human Gene Publishing 2015).
I hope that the next summit will serve as a forum for further discussions on the implications of this news and will provide guidance on how we, as a global society, can make the most of publishing. of genes. "
At the end of the line…
The reality is that this scientist has violated the basic bioethical principles for society in general and, given the scale of the unknowns, it is difficult to determine if it can actually give people participating in the study. test fully informed consent. He did not invent this technology, so being the first to use it in this way reflects more zeal than intellectual success. The global scientific community has shown restraint in this area, aware of the enormous ramifications involved. The way in which the scientific community and China deal with this "scientist" thug will tell us more about how consensus statements about strict restrictions and monitoring of CRISPR-Cas9 will be applied – or if we have decided that everyone can open Pandora's Box.
Remarks)
Feng Zhang and I both attended the Institute of Scientific Research (RSI) Center for Excellence in Education (CEE) – not at the same time. To learn more about the program, see the article "What Joe Lieberman and Ted Cruz Agree: STEM" on this link here.
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