by Anna Cuellar, contributor

How has genetically modified embryos revolutionized medicine today and where do people stand regarding this medical advancement?

The process of modifying the genetic material of an embryo to potentially improve the health and development of a baby is simply known as genetic editing. More specifically, “clustered regularly interspaced short palindromic repeats,” also known as CRISPR is a technique in which undesired genetic traits, such as disease mutations, can be removed from an embryo (1). The intended goal of genetic editing is to help prevent the continuation of undesired genetic disorders that affect the well-being of the baby. “It is especially convenient for many diseases that we know have genetic mutations, such as cancer”(2).

However, genetic editing raises major ethical questions. “There has been a widespread backlash against using the technique to ‘design’ babies”(3). Where do professionals “draw the line” (4)? If editing is used to prevent blindness, what stops individuals from also wanting to edit the eye color? Therefore, it is important to establish what genetic traits are considered acceptable for editing. Professionals must be clear on “the line between disease treatment and enhancement” (5).

For example, what qualifies as a necessary treatment? Blindness is not necessarily life-threatening, so does editing that trait count as enhancement even if correcting the disorder will improve the baby’s future quality of life? Statistics show that most Americans feel unsure how they feel regarding their opinions on gene editing. According to a poll for the opinions of the public regarding the use of gene editing to reduce the risk of disease, thirty percent of Americans believe it is a good idea, another thirty percent believe it is not a good idea, and lastly, thirty- nine percent are not sure where they stand (6). Furthermore, forty-nine percent of U.S adults would not want genetic editing done on their own baby and forty-eight percent say they would (7).

In 2019, Jiankui He, a Chinese researcher was sentenced for “Illegal Medical Practice” when he announced that his team successfully genetically edited two embryos that resulted in two full-term twins (8).  Although this accomplishment revolutionized CRISPR, He did not have the proper clearance before proceeding with the treatment. Further research suggests that the twins were affected alternatively to what He intended. In his attempt to edit the cells to prevent HIV, he may have coincidentally caused genetic changes elsewhere (9).

“One recent study prompted the MIT Technology Review to suggest the twins have enhanced memories and learning abilities” (10). The replicated study done with mice suggests that by changing the same cell edited in human embryos to prevent HIV, the brain’s overall cognition improved as well (11). This highlights the need for strict and careful regulations.

Aside from unintended changes, ethical and lawful questions also arise, such as: “how to use it ethically and legally” how they can “acquire the real consent from the experimental subjects” and “how to penalize the genome-editing research for non-medical reasons” (12). Regulations have been enacted in the United States because of what occurred in China. Genetic editing is not banned in the U.S, however, “The Food and Drug Administration created a moratorium,” and the “National Institutes of Health” created guidelines to keep researchers in a lawful place (13). A family’s choice is also put into perspective in a genetic editing case, “From a reproductive freedom perspective, we stand for a couples right to have access to information that enables them to mitigate disease risk for their future child” (14).

Genetic editing opens the door for families and professionals to help change the lives of babies with people on each side of the debate voicing their opinions on ethics, safety, and lawfulness.

Footnotes

1 Matej Mikulic, “CRISPR Genome Editing – Statistics & Facts” Statista, November 24, 2023. https://www.statista.com/topics/7803/crispr-genome-editing/#topicOverview.
2 Mikulic, “CRISPR Genome Editing – Statistics & Facts”
3 Mikulic, “CRISPR Genome Editing – Statistics & Facts”
4 Mary Todd Bergman, “Perspective on Gene Editing” The Harvard Gazette, January 9, 2019, 4, https://news.harvard.edu/gazette/story/2019/01/perspectives-on-gene-editing
5 Bergman, “Perspective on Gene Editing”, 4.
6 Rainie Lee et al., Americans are closely divided over editing a baby’s genes to reduce serious health risk. AI and Human Enhancement: American’s Openness is Tempered by a Range of
Concerns. Washington, D.C., U.S.: The Pew Charitable Trusts, 2022, 2, https://www.pewresearch.org/internet/2022/03/17/americans-are-closely-divided-over-editing-ababys-genes-to-reduce-serious-health-risk/
7 Lee et al., Americans are closely divided over editing a baby’s genes to reduce serious health risk. 3.
8 Shuang Liu, “Legal Reflections on the Case of Genome-edited Babies.” Global Health Research and Policy 5, no. 24 (May 2020): 1, https://doi.org/10.1186/s41256-020-00153-4
9 Jon Cohen, “Did CRISPR Help-or Harm-the First- Ever Gene- Edited Babies?” Science, August 1, 2019. 1, https://doi: 10.1126/science.aay9569.
10 Cohen, “Did CRISPR Help-or Harm-the First- Ever Gene- Edited Babies?”, 1.
11 Cohen, “Did CRISPR Help-or Harm-the First- Ever Gene- Edited Babies?”, 3.
12 Liu, “Legal Reflections on the Case of Genome-edited Babies.”, 1.
13 Liu, “Legal Reflections on the Case of Genome-edited Babies.”, 2.
14 Laura Hercher, “A New Era of Designer Babies May be Based on Overhyped Science.” Scientific American Health & Medicine. July 12, 2021, 7, https://www.scientificamerican.com/article/a-new-era-of-designer-babies-may-be-based-onoverhyped-science/.

Bibliography

Bergman Todd Mary, “Perspective on Gene Editing” The Harvard Gazette, January 9, 2019. https://news.harvard.edu/gazette/story/2019/01/perspectives-on-gene-editing/.
Cohen Jon, “Did CRISPR Help-or-Harm-the First- Ever Gene- Edited Babies?” Science, August 1, 2019. https://doi: 10.1126/science.aay9569.
Hercher, Laura. “A New Era of Designer Babies May be Based on Overhyped Science.” Scientific American Health & Medicine. July 12, 2021.
https://www.scientificamerican.com/article/a-new-era-of-designer-babies-may-be-basedon-overhyped-science/.
Liu Shuang, “Legal Reflections on the Case of Genome-edited Babies.” Global Health Research and Policy 5, no.24 (May 2020): 1-3. https://doi.org/10.1186/s41256-020-00153-4.
Mikulic Matej, “CRISPR Genome Editing – Statistics & Facts” Statista, November 24, 2023. https://www.statista.com/topics/7803/crispr-genome-editing/#topicOverview.
Rainie Lee, Cary Funk, Monic Anderson, Alec Tyson et. al. Americans are closely divided over editing a baby’s genes to reduce serious health risk. AI and Human Enhancement:
American’s Openness is Tempered by a Range of Concerns. Washington, D.C., U.S.: The
Pew Charitable Trusts, 2022. https://www.pewresearch.org/internet/2022/03/17/ai-andhuman-enhancement-americans-openness-is-tempered-by-a-range-of-concerns/.