Genetically-Modified People Exist Thanks To A Physicist And Biomedical Researcher Who Did Not Weigh the Ethical Implications
Genetically engineered humans are now a fact of life. To be specific, the first human children to have had their DNA genetically edited were recently born. Named “Luna” and “Nana,” the twin girls are alleged to have been born healthy. Biomedical researcher He Jiankui edited the DNA of embryos belonging to eight couples consisting of HIV-inflected males and HIV-free females using a technique known as CRISPR. The expressed goal was to make the would-be offspring immune to HIV. Even though it is still extremely controversial and morally questionable, research on human embryos has become somewhat of a norm, especially in countries outside of the developed world where regulations are far more lax or even nonexistent. Implanting those embryos with the intent of creating genetically modified humans is, however, both largely unheard of and considered unethical. Naturally, He Jiankui now faces backlash for his human experiments. The question is whether or not criticism of the He experiment is actually valid as well as what should be done to address similar circumstances.
Although an associate professor in the Southern University of Science and Technology’s Department of Biology in Shenzhen, China, He has been on unpaid leave since February of 2018. Denying any involvement in He’s human experimentation, Southern Universe has launched an investigation into He’s claims. Recognizing the type of gene-editing work He performed is technically banned in China, He’s work is likely to attract legal scrutiny. Rice University professor and He’s former adviser, Michael Deem also faces scrutiny over his potential involvement in He’s experiment. Deem is on the scientific advisory boards of He’s two companies as well as a shareholder of both companies. The legality of the situation notwithstanding, He’s human experimentation is considered unethical due to the potential harm it might cause “subjects.” He defends his decisions by relying on the fact that the infants in question appear to be healthy. Even if the experiment was successful, however, does not justify it. The ends do not justify the means, especially when the ends could have been reached by a different and less dangerous means.
To be fair, He is not without defenders. Harvard geneticist George Church, whose lab helped pioneer CRISPR, has taken a more measured outlook on the development. While he currently supports a ban on such experimentation and does not support He’s work, Church views human experimentation as an inevitability once more is known about the consequences of gene-editing. From He’s perspective, his experiments were justifiable, because the couples involved had consented to the experiment and because the experiment was an attempt to prevent the spread of a disease, i.e. it provided a benefit to the subjects. Informed consent is essential when it comes to experimenting on sentient beings, but informed consent requires the subjects of an experiment to fully understand the implications of the procedure. In this case, the parents, not the unborn, gave consent. Even if that was not an issue, it is highly unlikely that the couples involved fully understood the implications of He’s experiments as even He did not seem to understand them.
He appears to have viewed the experiment as a means to prove that the technical hurdles to applying gene-editing to humans can be successfully overcome. He appears, at best, to have only been concerned about the so-called “off-target” mutations that the technique might create. He’s experiment, however, involved the disabling of the CCR5 gene, which codes for a receptor that HIV exploits. Given that HIV is a viral disease, the use of gene therapy to treat it is both an odd choice and, most likely, a thoroughly unnecessary or impractical approach to treating the disease. If preventing the spread of HIV was the intent, one would experiment on ways to prevent infected fluids from spreading to unborn offspring. That said, manipulating people’s genes without understanding the implications can easily result in a whole host of new diseases, e.g. cancer. Assuming there was actually a worthwhile benefit to He’s approach, the benefit is not the issue. The costs are. He did not appear to even consider the costs of his experiments.
What might be surprising to most people is that He Jiankui was actually trained as a physicist. Michael Deem is also a physics professor who happens to study genetics. For the record, the author of this article has a BS in physics. For those who do not know, physics is the study of motion and energy. It is the science of Isaac Newton, Albert Einstein, and Richard Feynman. It is the field that birthed the atomic bomb. The knowledge and methodologies used in physics have been broadly applied to a number of subjects from engineering to business. Modern biology, for example, would not exist without the techniques developed by physicists, e.g. the technologies used to image and decode DNA. Biophysics is a booming field. Physics has been around for a long time and it has developed a number methodologies to ensure researchers remain objective observers. In terms of ethics, however, physics is very immature, henceforth the atomic bomb. Although pretty much every breakthrough in physics can either enhance human civilization or destroy it, physicists do not tend to study things that directly impact people, so ethics has always been a minor consideration in physics.
In the case of biomedical researchers like He Jiankui, the lack of ethics in physics has proven to be a serious lapse. Medical doctors and other professionals are beholden to ethics considerations thanks to their training, their peers, and legal requirements. The mindset of men like He Jiankui and Michael Deem is similar to that of Dr. Walter Freeman, who pioneered the “ice pick lobotomy.” In the fields of biology, medicine, and psychology, properly trained researchers are trained to consider the impact of their experiments on their subjects, whether or not those subjects feel pain and whether or not they are aware of the experiment. A rat is not just a behavioral “black box” and an embryo is not just an embryo. To men like He and Deem, the infants born from this experiment are just embryos. It seems unlikely He even considered the implications of what would happen if these children developed lifelong medical issues. He did not consider the impact on them and their parents nor did he consider any liabilities he might bare. Potentially preventing an HIV infection through a radical procedure with unknown risks is not enough to justify the disregard for the ethical considerations and procedural boundaries needed to protect “subjects” of all radical experiments. It is tempting to see He as a pioneer, but the truth is that the researcher has likely committed a crime against science and humanity.
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