On November 25, 2018, He Jiankui, a Chinese scientist, revealed that he had created the first ever gene-edited babies, just a day before the Second International Summit on Human Genome Editing (Li et al., 2019). Immediately, this news was met with criticism from researchers across the world for its ethical violations (Normille, 2018). Using the CRISPR-Cas 9 genome editing technique, Jiankui modified the surface of White Blood Cells, making the twins immune to HIV. Because of this genome editing, these twins could face possible off-target mutations, leading to future health problems (Normille, 2018). In addition to these risks, there are many methods and safety precautions that can effectively prevent HIV, making Jiankui’s work medically unnecessary (Normille, 2018). Jiankui had to have been aware of the ethical issues of his research, so why did he still do it? Most likely, Jiankui wanted to prove that he was capable of such a task, regardless of the implications. For Jiankui, the idea of creating the world’s first edited embryos must have been too enticing to pass up. In terms of this situation, the Chinese government is handling it accordingly. As of right now, Jiankui is sentenced to three years in prison for “illegal medical practice” (Cyranoski, 2020). I think it is most important that both researchers and lawmakers learn from this situation. It is a wake-up call for researchers and scientists to think twice about the ethical implications of their research, and it is a wake-up call for lawmakers that stricter policies might need to be put in place.
Of course, this isn’t the first time scientists have run into ethical issues in their research. One of the most famous unethical scientific violations is the use of African American woman’s Henrietta Lacks’ cells (Butanis, 2020). Lacks was a terminal cervical cancer patient treated at John’s Hopkins University. It was there that Dr. George Gey retrieved cells from Lacks’ cervix without informing her. It just so happened that these cells were “immortal”, meaning not only did they stay alive in the lab, they also replicated indefinitely. For over 60 years, her cells, now called HeLa cells, have been used in research experiments, including the research that developed the polio vaccine (Butanis, 2020). Despite this information, Henrietta Lacks’ family did not know that her cells were being used until over 20 years after her death (Skloot, 2010). Both Henrietta Lacks’ cells and Jiankui’s gene-edited babies raise the ethical issue of consent. However, in the 1950’s, there weren’t specific practices for retrieving consent, and there weren’t “any regulations on the use of patients’ cells in research” (Butanis, 2020). Today, there exists both specific regulations for obtaining proper informed consent as well as strict research laws. Therefore, Jiankui’s violations such as “invalid informed consent” and “regulatory misconduct” were unacceptable (Ling et al., 2019).
Overall, the issues raised by research like Jiankui’s gene-edited babies could have a negative impact on the public opinion of medicine and science. Sarah Chan, a bioethicist at the University of Edinburgh, expressed these concerns, saying Jiankui’s premature use of gene editing “threatens to jeopardize the relationship between science and society… and might potentially set the globally development of valuable therapies back by years” (Normille, 2018). Gene editing technology, like the CRISPR-Cas9 technique, is a powerful and promising tool, and it would be a shame if instances like these hindered it from reaching its full potential.
References
Butanis, B. (2020, March 9). The Legacy of Henrietta Lacks. Retrieved from https://www.hopkinsmedicine.org/henriettalacks/index.html
Cyranoski, D. (2020, January 3). What CRISPR-baby prison sentences mean for research. Retrieved from https://www.nature.com/articles/d41586-020-00001-y
Li, J. (2019). Experiments that led to the first gene-edited babies: the ethical failings and the urgent need for better governance. J Zhejiang Univ Sci B. 20(1): 32-38. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6331330
Normile, D. (2018). CRISPR bombshell: Chinese researcher claims to have created gene-edited twins. Science mag. Retrieved from https://www.sciencemag.org/news/2018/11/crispr-bombshell-chinese-researcher-claims-have-created-gene-edited-twins
Skloot, R. (2010, February 2). 'Henrietta Lacks': A Donor's Immortal Legacy. Retrieved from https://www.npr.org/2010/02/02/123232331/henrietta-lacks-a-donors-immortal-legacy