176 Ethics of Gene Therapy

This topic was also discussed in earlier sections 17.7 and 17.8. Some new technology is mentioned here. There are many more technologies and examples available for discussion, but unfortunately there is not enough time and space available for this section.

This topic is also rapidly changing with the arrival of new technologies. In the past, gene therapy also aimed to treat only affected tissue cells. And the technologies were maybe more complicated and expensive. A discovery made about genes in bacteria called clustered regularly interspaced short palindromic repeats (CRISPR) technology allows scientist to change genes and thereby the genome (entire collection of the genetic information of an organism). There are some concerns about how accurate and how stable this treatment technology is. Other genes might be affected, and the treatment might not be long-lasting or strong enough or efficient enough (see also What are genome editing and CRISPR-Cas9? MedlinePlus; and the open access article by Yang Yue et al. 2021). An additional question arises about whether it safe and ethical to change genetic information of germ cells or stem cells that are passed on to children.  In 2018, two twin girls were born with modified genes to make them HIV-immune. Their birth was the result of an “experiment” in which the males were HIV carriers. CRISPR technology was used to immunize the babies against HIV by disabling the CCR5 gene that enables HIV infection.

An open access article discusses the ethics of this case of gene therapy.^[1] This author also criticizes that the gene therapy was not really therapeutic to treat existing HIV infection of the fertilized egg or embryo, but an experiment to test the capability of the method.

Ethics questions

• What do you think about using a new technique that has safety risks that are not fully understood?
• What do you think about using gene therapy that is not therapeutic but lets you understand if a method works? Can you use healthy organisms or humans for that?

Further reading

Raposo, Vera Lucia. “The First Chinese Edited Babies: A Leap of Faith in Science.” JBRA assisted reproduction vol. 23,3 197-199. 22 Aug. 2019, doi:10.5935/1518-0557.20190042

What are genome editing and CRISPR-Cas9? MedlinePlus [Internet]. Bethesda (MD): National Library of Medicine (US); [updated 2020 Jun 24]. What are genome editing and CRISPR-Cas9?; [22 March 2022]; [about 5 p.] https://medlineplus.gov/genetics/understanding/genomicresearch/genomeediting/ ; accessed 4/21/2022

CRISPR/Cas: Advances, Limitations, and Applications for Precision Cancer Research. Yang Yue, Xu Jin, Ge Shuyu, Lai Liqin. 2021.  Frontiers in Medicine. Vol.8. DOI=10.3389/fmed.2021.649896    URL=https://www.frontiersin.org/article/10.3389/fmed.2021.649896, accessed 4/21/2022; open access article