Designer Genes: Who Gets To Be Healthy?

Writer: Farwa Tashin

Editor: Rayyan Bhuiyan

While handpicking your child’s traits seems like a science fiction tale, it appears we are getting closer to it becoming a reality. Recent genetic technology such as different types of gene therapies are widely seen as acceptable, under the assumption that they are being utilized to treat and prevent diseases as early as possible. However, new proposals suggest that gene editing may be applied for other uses other than medical screening, diagnoses and treatments, such as selecting traits like intelligence, hair color, eye color, and more [1]. Therefore, the question of whether genetic enhancement, which involves altering non-medical traits such as IQ, strength, and appearance, should be controlled or restricted arises. CRISPR and other gene editing technologies make it harder to draw the line between healing and customizing, while also giving us the power of writing human life before it begins. However, such power also poses the risk of creating a divided society where privilege and poverty reside in our DNA.

Gene editing was first created to correct or remove harmful mutations that could later lead to fatal diseases, such as cystic fibrosis, sickle-cell anemia, muscular dystrophy, and more. There is a long and rich history behind gene editing, with new and different treatments and trials being created and tested constantly. Recently, in 2020, a patient named Victoria Gray was the first to undergo a type of gene editing using CRISPR, which stands for “Clustered Regularly Interspaced Short Palindromic Repeats,” and is essentially a ground-breaking gene editing tool that allows scientists to accurately and efficiently add, remove, or alter DNA sequences to treat illnesses [2]. She underwent CRISPR sickle-cell disease treatment, which proved successful. In this regard, gene editing may lessen or even eradicate fatal illnesses. Gray’s successful treatment serves as a glimpse into the future where we may be better able to treat and prevent diseases as soon as possible. However, as effectiveness grows, the question of who will be able to pay for it becomes more difficult as this technology becomes more pressing.

Although gene editing has great promise as an effective preventative treatment, its high cost will be a barrier for many. Such advanced technology doesn't come for free, especially considering the high level of experimentation, materials, machines, and funding required to create, test, edit, and perfect procedures like CRISPR. Another type of CRISPR gene editing named Casgevy, has been priced at $2.2 million per patient. Casgevy is an ex vivo CRISPR treatment in which a patient’s own stem cells are extracted and genetically altered before being reintroduced following chemotherapy. This highly customized procedure, which involves sophisticated laboratory testing and specialized expertise, contributes to the Casgevy therapy’s high cost [3]. This results in gene editing becoming an elitist pursuit, as only large hospitals and affluent nations will be able to afford them.

As stated by The Harvard Gazette, “For those living in poverty, it is yet another way for the privileged to vault ahead” because health itself may start to be seen as a status of privilege and wealth, with only exclusive families being able to customize DNA, while others are forced to live with their hereditary illnesses [4]. The growing debate over germline editing, which allows for genetically altering embryos or reproductive cells which are then passed down to future generations, may widen this gap further. While gene editing has its benefits and is a major development for the world of science, it has the potential to increase wealth disparity and transform inequality into a biological conflict.

Such inaccessible genetic treatments will not only alter medicine as we know it but also how we view each other. People who cannot afford such expensive therapies may continue to struggle for generations, while other families can raise their children free of disorders. If such life-changing opportunities begin to depend on income, medicine is no longer about care, but rather about profit. Such advanced technology can change lives, but we must decide how to go about using it in a manner that is fair and equal to all.

The scientific community has to proceed with caution as gene editing technology continues to advance. Scientists, politicians, ethicists, and healthcare professionals alike are advocating for stronger regulation and a worldwide halt on heritable human gene editing until it can be demonstrated to be harmless, equitable, and clinically necessary [5]. Germline editing would allow for drastically changing the fate of future generations, raising issues outside of science.

Gene editing technology has the potential to revolutionize medicine, but such advancements mean little if they exclusively benefit the wealthy, while marginalizing the rest of society. When access is unequal, gene editing can restrict medicine from improving everyone’s quality of life and increases inequality when it is only accessible to the wealthy. In a healthcare system that already fails far too many people, gene editing might contribute to that issue if not implemented with equality in mind.

References:

1. “Technology Allows Parents to Choose Baby’s Traits.” Www.cbsnews.com, 9 Mar. 2009, www.cbsnews.com/losangeles/news/technology-allows-parents-to-choose-babys-traits/.

2. Synthego. “History of Genetic Engineering and the Rise of Genome Editing Tools.” Synthego, 2019, www.synthego.com/learn/genome-engineering-history.

3. Rueda, Jon, et al. “Affordable Pricing of CRISPR Treatments Is a Pressing Ethical Imperative.” The CRISPR Journal, vol. 7, no. 5, 10 Oct. 2024, www.liebertpub.com/doi/10.1089/crispr.2024.0042, https://doi.org/10.1089/crispr.2024.0042.

4. Bergman, Mary Todd. “Perspectives on Gene Editing.” The Harvard Gazette, Harvard University, 9 Jan. 2019, news.harvard.edu/gazette/story/2019/01/perspectives-on-gene-editing/.

5. Barrett, David, et al. “International Call for a 10-Year Moratorium on Heritable Human Genome Editing.” Cytotherapy, May 2025, www.isct-cytotherapy.org/article/S1465-3249(25)00718-2/fulltext, https://doi.org/10.1016/j.jcyt.2025.05.007.

6. National Academy of Medicine, and National Academy of Sciences. “Enhancement.” Nih.gov, National Academies Press (US), 14 Feb. 2017, www.ncbi.nlm.nih.gov/books/NBK447264/.