Gene-editing: Social Impacts and Ethical Considerations

According to the World Health Organization’s (WHO) 2019 Global Health Estimates, noncommunicable diseases make up 7 of the world’s top ten causes of death [1]. Even without the grim focus on people dying, it is undeniable how the human mind and body suffer when such diseases or injuries alter people’s lives, limiting them in several ways. So, is there a way we could eradicate the physical pain, the emotional distress, and the mental agony? If not for ourselves, for our children? Permanently? The disability advocacy community would scream “social model of disability” as answers to those questions, and rightly so. But for a second, let’s entertain people who believe in the medical model of the disability [2] — the belief that we can “cure” people through medical advancements. Enter human genome editing.

Genome editing is simply a set of technologies that allow scientists to alter human DNA at specific places, leading to changes in physical traits. One can imagine that if the human DNA could be modified then diseases could be cured, injuries could be undone. People would always be healthy. The leading causes of death would be eradicated. Our children would never have to suffer health-wise — and not just our children but the future generations to follow.

As a matter of fact, Chinese scientist He Jiankui, edited the genome of human embryos in 2018, in an attempt to confer genetic resistance to HIV. He was prosecuted for violating the laws, regulations, and ethical norms around clinical operations involving human embryo genome editing for reproductive purposes. The babies were born in October 2018 and were later considered likely to die at a young age due to irresponsible gene editing by He [3].

Outside of humans, genome editing has been used to save endangered species and even resurrecting extinct species. In very recent news, Elizabeth Ann, a black-footed ferret was cloned using preserved cells from a long-dead wild animal [4]. Elizabeth Ann may be the first ferret to have been cloned but is surely not the first animal — cattle, sheep, dogs, horses, and even mosquitoes that are incapable of transmitting malaria, have all been cloned before.

While to some these technological and medical advancements may seem exciting and a tremendous step forward, this blog post highlights some of the ethical concerns that gene editing poses. Given the rapid evolution in the domain of gene editing, it is only a matter of time when it is commercially available to the public. However, without legal regulations in place, the benefits of gene-editing would only be available to the rich, exacerbating the inequalities between the rich and the poor. For example, gene-editing technologies are already available in gender selection in reproductive procedures such as IVF, and even when breeding cats and dogs, but can only be afforded financially by the rich. Furthermore, it is inevitable that gene-editing would be used to alter physical characteristics, giving the rich more opportunities to get hired, to get promotions, and to dominate in several domains including sports. By coding inequality into the human DNA, the social divide between the rich and the poor would only worsen.

The figure above [5] shows that the existing laws and policies around gene editing vary from one country to the other. In countries where gene editing is permissive, such as Mexico, it is unclear how the regulations will be formed. Who will be allowed to undergo gene editing? How will the rules be made? Will the public have the ability and the opportunity to participate in the development of the regulatory framework? If so, it is crucial for the public to be properly educated on the subject matter, with a clear understanding of the pros and cons. It is critical for them to have an educated opinion, avoiding the Western narratives to create biases. Furthermore, it is of utmost importance that such conversations take into account the religious, cultural, and societal beliefs of the public. Without a sturdy regulation in place and without a robust process to form such regulations, advancements such as gene editing that could possibly affect people’s heritage and future generations could be more detrimental than they are beneficial.

As much as it sounds like comic books or science fiction, the idea of “super-soldiers” and a “master race” is not an unknown concern. In his most recent book, Stephen Hawking mentioned, “Once such superhumans appear, there are going to be significant political problems with the unimproved humans, who will not be able to compete. Presumably, they will die out, or become unimportant” [6]. Gene-editing may be a huge leap forward in technological advancement but without regulation and an unethical intent, it has the ability to do more harm than good.

Ethical considerations are also important outside of the human world. For example, a research study [7] reports that only cloning cattle using gene editing has a low success rate, with fewer than 10 percent of the cloned animals surviving to birth. Another consideration stems from the fact that gene editing costs money and utilizes resources. Does it make sense to spend money, time, and effort in resurrecting a dead mammoth when alive elephants could very well use those resources? Or to bring back extinct species at an expense of possibly risking making another extinct? Furthermore, who decides the answers to these questions?

Finally, it’s important to understand that despite the best technological and medical advancements, people who suffer from noncommunicable diseases and people with disabilities may not need to be “cured.” They may not want to be “cured.” The focus, given the current state of the world, should be on educating ourselves on welcoming people with disabilities into society in a way that they feel included and not discriminated against. The segregation between people who need a medical breakthrough so they could look like the others and the people who are the others does not better the world. Gene-editing may paint a hopeful future, but that future may be too distant from where we currently stand. Technology is not the answer — it is only a part of the solution.

References

[1] World Health Organization. (n.d.). WHO reveals leading causes of death and disability worldwide: 2000–2019. World Health Organization. https://www.who.int/news/item/09-12-2020-who-reveals-leading-causes-of-death-and-disability-worldwide-2000-2019.

[2] Marks, D. (1997). Models of disability. Disability and rehabilitation, 19(3), 85–91.

[3] Bodkin, H. (2019, June 3). World’s first gene-edited babies ‘more likely’ to die young. The Telegraph. https://www.telegraph.co.uk/science/2019/06/03/worlds-first-gene-edited-babies-likely-die-young/.

[4] Fox, A. (2021, February 22). Elizabeth Ann Is the First Cloned Black-Footed Ferret. Smithsonian.com. https://www.smithsonianmag.com/smart-news/elizabeth-ann-first-cloned-black-footed-ferret-180977065/.

[5] Isasi, R., Kleiderman, E., & Knoppers, B. M. (2016). Editing policy to fit the genome?. Science, 351(6271), 337–339.

[6] Hawking, S. (2018). Brief answers to the big questions. Bantam.

[7] Biase, F. H., Rabel, C., Guillomot, M., Hue, I., Andropolis, K., Olmstead, C. A., … & Lewin, H. A. (2016). Massive dysregulation of genes involved in cell signaling and placental development in cloned cattle conceptus and maternal endometrium. Proceedings of the National Academy of Sciences, 113(51), 14492–14501.