It’s easy to justify unethical behavior. All that is necessary is to convince yourself that whatever standards may be violated, whatever lines may be crossed, it’s all in pursuit of a greater goal, and it will be worth it in the end. As Spock put it, and many utilitarian philosophers before him expressed, “The needs of the many outweigh the needs of the few.” Jankui likely believed that he was benefiting the girls or at least the world, and that the benefits to the public of performing this experiment would outweigh the negatives.
This sounds like a perfectly reasonable statement until it’s put into practice, and “the few” are defined. Often, these are vulnerable people who either trust the researchers conducting the study to behave ethically, or are forced/coerced into it. In the case of the Tuskegee study, black males with syphilis were recruited to study disease progression (CDC, n.d. a). They were not told the nature of their condition or the research being conducted, but were given free meals and medical exams, and burial insurance (CDC, n.d. a). The study continued after penicillin was accepted as a treatment for syphilis in 1945 (CDC, n.d. a). In Nazi twin studies (which are so awful that I will not describe them here), participants were treated as though they had less value than animals (Blakemore, 2019). These twins were similarly not treated with human dignity and their parents did not give informed consent, though this study will hopefully prove to cause less harm than the others.
One could argue that the twins who were made immune to HIV would be the ones most likely to benefit, as theoretically they would never get the disease. But this ignores the fact that the chances of these girls acquiring HIV from their HIV-positive fathers was quite low (Normile, 2018), and there are multiple ways to prevent HIV exposure and decrease the likelihood of acquiring HIV (CDC, n.d.b). Basic steps such as only having protected sex or abstaining altogether, not sharing needles, wearing gloves while handling blood and other virus-loaded bodily fluids, and even taking medication before or after HIV exposure are all effective ways of preventing people from acquiring HIV, and none of these involve significant risk to the individual using them (CDC, n.d. b). The idea that it’s necessary to edit these girls’ genomes in order to save them from acquiring HIV is laughable. Thus, there is no likely, significant benefit to the girls as a result of this procedure. Their health will need to be closely monitored all their lives, and there may be problems associated with this mutation that we are not yet aware of, or these girls may suffer from consequences we already know about, such as an increased risk of acquiring a severe case of West Nile virus (Normile, 2018). Furthermore, since this was a germline mutation, the health of these girls’ potential future children is at risk, and this may significantly affect their decision on whether or not to even have children.
Neither the girls, nor their parents, nor these potential future children consented to this intervention, and yet they are stuck with it (Li et al., 2019). (The parents did sign a consent form, but it was entirely in English, 23 pages long, and full of jargon (Li et al., 2019). It also threatened them with a fine if they withdrew (Li et al., 2019).) This is a clear violation of the principle of informed consent. Bottom line: human participants in research have rights. These girls’ rights, and the rights of their parents, and the rights of their potential children were violated. In the future, we may discover that it’s safe to modify human germlines, or at least that it’s safe to modify non-heritable traits for human health. This is a controversial medical and ethical issue, and it will take time to determine whether it’s a good idea. But for now, this study was unethical.
Unethical medical research has a lasting cost, both for the public at large and for the individuals involved. In the Tuskegee Syphilis Study, participants who might have survived syphilis with treatment died of the disease, which has a long, slow, miserable decline (CDC, n.d. a). This and other abuses, along with lack of education has contributed to distrust of medical professionals among the black community, which unfortunately experiences a disproportionate health burden. Proper management of chronic disease requires trust and cooperation between doctors and patients; for some people, this may not be possible. It’s extremely difficult for the survivors of the Nazi twin studies. In the case of Jankui’s study, this may adversely affect the twin girls he experimented on and their children, and it may make the public more hesistant to try genetic modification as a treatment. For people with cystic fibrosis or sickle-cell anemia, these treatments could be life-saving.
References
Blakemore, E. (2019). Why the Nazis Were Obsessed With Twins. History.com Retrieved from: https://www.history.com/news/nazi-twin-experiments-mengele-eugenics
CDC. (n.d. a). The Tuskegee Timeline. Retrieved from: https://www.cdc.gov/tuskegee/timeline.htm
CDC. (n.d. b). HIV Prevention. Retrieved from: https://www.cdc.gov/hiv/basics/prevention.html
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