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Nov 24, 2024

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The Fabricated Ethics of the Controversial Birth of Gene Editing Babies in 2018 In November 2018, the birth of two twin girls named Lulu and Nana from gene editing created global outrage. He Jiankui recruited eight couples consisting of fathers with positive HIV and mothers who did not. During in vitro fertilization, fathers’ sperms were cleansed of HIV and induced with a mutation on the gene CCR5 using CRISPR-Cas9, which makes the offspring immune to HIV. Thirteen embryos underwent gene editing; however, there were only two pregnancies in two women. The first woman gave birth by cesarean section with non-identical twin girls named Lulu and Nana on the night in mid-October 2018 (Greely, 2019). The second woman was pregnant and delivered a girl named Amy in August 2019 (Cabrena, 2022). He Jiankui believed that research had significant beneficence, respect for human dignity, and justice. In terms of beneficence, He was courageous to take criticism from society and provided an alternative hope for healthy children with HIV parents. Regarding respect for human dignity, his research team allowed participants to withdraw from the study. Couples agreed to participate, but “one subsequently withdrew” (Greely, 2019). In terms of justice, participant names, birth locations, birth dates, and baby names were kept confidential by using pseudonyms to protect their identity and privacy. Despite many benefits, there is much maleficence in the gene modification of fetuses. Many scientists criticized his study for “the problematic study protocol and lack of transparency” (Meyer, 2020). Regarding problematic study protocol, there was no comparison between fetuses with and without gene editing. He Jiankui called his research a “clinical trial,” but other scientists claim that his research was actually “a therapeutical intervention” (Raposo, 2019).

Regarding lack of transparency, most of He’s research was conducted off campus without awareness of the Southern University of Science and Technology (Raposo, 2019). I believe this research is unethical because it violates two primary ethical principles of the Belmont Report. In the beneficence principle, this research causes more harm than benefits. Editing the gene CCR5 can cause twins to become vulnerable to West Nile virus and flu (Raposo, 2019). Also, changing one gene will increase the chance of genetic disorders by the CCR5. Regarding the principle of respect for human dignity, participants and the research team were not fully aware. Most participants did not know the risk with CRISPR-Cas9 on fetuses (Greely, 2019). Some members were clueless about implanting in vitro genes into the mother wombs (Cabrena, 2022). It is still too early to apply gene editing such as CRISPR-Cas9 on fetuses as a therapeutic approach. We still need more time to understand the mystery of genomes and to learn the risks associated with gene editing on fetuses. It is now or never to prevent many unethical cases by implementing many international governances, sharing intellectual property, and disclosing fully among researchers, participants, and research teams.

References Cabrena, N. G. (2022, June 30). What’s next for the gene-edited children from the CRISPR trial in China? New Scientist. https://www.newscientist.com/article/mg25533930-700-whats- next-for-the-gene-edited-children-from-crispr-trial-in-china/ Greely, H. T. (2019, August 13). CRISPR’d babies: Human germline genome editing in the “he jiankui affair.” Journal of law and the biosciences. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6813942/ Meyer, M. (2020, July 3). The CRISPR babies controversy: Responsibility and REGULATION IN THE SPOTLIGHT . EMBO reports. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7332977/ Raposo, V. L. (2019, August 22). The first Chinese edited babies: A leap of faith in science . JBRA assisted reproduction. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6724388/

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