If someone was asked about the prospect of genetically modifying a human being just a few decades ago, they would have likely dismissed the notion as mere science fiction. But in recent years, technology contributing to gene editing has made human genetic modifications a very real possibility—to the point where Chinese researcher He Jiankui claims to have to used CRISPR-Cas9 technology to create the first gene-edited twins. With this rise in technology, the question must be asked: should human genetic modifications be regulated? As it becomes increasingly apparent that the line between helpful gene therapies and eugenics can be easy to cross, it seems that the answer to this question is a resounding yes.
Before investigating the need to regulate human gene editing, it’s important to take a step back and see what it can actually be used for. In recent years, genetic modifications have been used primarily to treat disease, with the potential to target everything from cancer to HIV. For instance, Casgevy emerged in 2023 as a first-of-its-kind gene therapy that has successfully been used to treat sickle cell disease, a debilitating blood disorder that had previously been treated with multiple rounds of treatment and chemotherapy. Gene therapies like these typically involve somatic cell editing, which target the non-reproductive cells in the body and can’t be passed down to offspring.
However, the controversy emerges as the prospect of germline editing—where reproductive cells are edited and modifications can be passed down to offspring—becomes more of a possibility. This raises ethical questions as germline editing may result in unintended consequences and side effects for future generations that never asked to be modified.
Additionally, as gene editing becomes more and more advanced, it may become possible to create “designer” babies. Going back to the case of He Jiankui’s gene-edited twins, being able to pick and choose which genetic qualities one’s child has could be great for ensuring that future generations are free from certain diseases. But in a world where so much hinges on physical traits, it’s possible that germline editing could extend to more superficial qualities, which could only serve to exacerbate social inequalities. With enough advancement, it’s possible that qualities like intelligence or creativity could even be impacted, although gene editing has a long way to go before that point.
As such, it is imperative that genetic modifications, especially those on humans, should be regulated by law. More specifically, legislation should ensure that genetic engineering can only be used to treat disease, and only be accessible to those who intend to treat disease (though the line between a disorder and a more superficial flaw can be difficult to distinguish). But even though there’s still time before gene editing can lead to the consequences described above, it’s important that some baseline regulations are established beforehand. These include legislation ensuring that gene therapies are equally accessible to all socioeconomic groups, that the consequences of genetic engineering be well known, that all people are people are treated equally regardless of their genetic qualities, and that nations around the world collaborate on advancing and regulating their genetic research.
Fortunately, many countries have already adopted some measures of gene editing regulation. For instance, genetically modified organisms (GMOs) are regulated in many countries to ensure that modified crops are safe for both humans and the environment. Meanwhile, the US and many countries in Europe have also adopted the Oviedo Convention, a set of rules to ensure that individuals are treated equally and with dignity in the biomedical field.
Of course, as gene editing gets more advanced, legislation regulating it must advance alongside it. In this way, these technologies can still continue to provide revolutionary disease treatment, without the social consequences that may come with it.
Image Credit: science.org
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