The Clinical Application of Gene Editing: Ethical and Social Issues
PaSAGE team members Ormond, Bombard, Howard, Isasi, Musunuru, Riggan, Michie, and Allyse co-authored this paper. It was published in Personalized Medicine.
This paper looks at the current state of gene-editing technology. It also discusses the ethical and social issues that surround different types of gene-editing. Finally, it reviews new stakeholder data. Stakeholders included are professionals, the general public, and people and families with genetic diseases.
One type of gene editing is somatic gene editing. With this method, the changes are made in fully grown cells. Any changes made are not passed down to future generations. This method can occur on a baby during pregnancy or at any point in life after birth. With somatic gene editing, only a specific kind of cells would be changed, like a single organ.
There are two main ethical issues with somatic gene editing after individuals are born. The first is that the treatments may be aimed at populations that have no other treatment options. The second is that some are concerned how treatment could impact development in kids. There is also a concern about somatic gene editing in babies before it is born; the treatment results in a risk to the pregnancy and/or mother.
Another type of gene editing is germline gene editing. This method is done in germ cells, like human eggs or sperm, or single-cell embryos. Any changes made with this method are passed down to future generations. With germline gene editing, all the cells in the body would be affected.
There are a few main ethical issues with germline gene editing. The first is that if and how the changes will impact future generations is unknown. The second is that there are legal or funding bans on germline editing in many places. This could mean that access to treatment is unequal. Another ethical issue is where to find the large number of embryos needed for research before it is used on humans. The final issue is that there is currently a need for international oversight of clinical trials.
Additionally, there are ethical issues with gene editing in general. First, the risk of harm is currently unknown. Additionally, gene editing technology most often targets a specific gene. It is possible that the technology could change a gene other than the target one, with unexpected consequences. Next, it is difficult to decide what an acceptable use of this technology is. Is it okay to use on cancer (treatment)? What about eye color (enhancement)? How about to reduce a person’s risk of a disease (prevention)?
To make potential gene editing treatments as just and applicable as possible, stakeholders must be involved. By listening to their opinions, policy around the technology can reflect societal interests and values.