Attitudes Toward Hypothetical Uses of Gene-Editing Technologies in Parents of People with Autosomal Aneuploidies

PaSAGE team members Marsha Michie, Megan Allyse, Kirsten Riggan, and Kelly Ormond co-authored this paper.

Gene editing is being studied right now. Scientists want to use this process to treat genetic conditions. It is important to listen to the views of people with genetic conditions. The authors of this paper talked to 27 parents of people whose children have an extra copy of a chromosome. Ten of the parents interviewed have a child with Down syndrome (DS), or an extra copy of the 21st chromosome (T21). Eight of the parents have a child with an extra copy of the 18th chromosome (T18). Nine of the parents talked to have a child with an extra copy of the 13th chromosome (T13).

Overall, the parents of children with a trisomy condition have mixed feelings toward somatic and germline gene editing. Many parents were concerned about how gene editing these conditions would change peoples’ feelings about DS. All parents interviewed prioritized using gene editing for life-threatening physical health issues, if present. Many also felt that gene editing could be used to increase their children’s communication. 

The most supported way to use gene editing differed between parents of people with T21 and parents of people with T13/T18. Most parents of people with T21 felt that Down syndrome did not impact the health of their children much at all. However, if it did, they would be more likely to support the use of gene editing. Other than physical issues, most parents of children with T21 felt that improving their child’s ability to communicate and function independently was the most important thing. Importantly, not all parents of T21 children supported gene-editing. However, all but one parent of children with T18/T13 supported gene editing for their children. They felt the most important application of gene editing was life-threatening health issues. Some parents also supported using the technology for cognitive issues.

Overall, this study showed that lived experience is important. Opinions on gene-editing are not the same between different patient populations. Also, the concerns of those with lived experience with genetic conditions may be different from the discussion about the technology in general.

Citation: Snure Beckman E, Deuitch N, Michie M, Allyse MA, Riggan KA, Ormond KE. Attitudes Toward Hypothetical Uses of Gene-Editing Technologies in Parents of People with Autosomal Aneuploidies. CRISPR J. 2019;2(5):324-330. doi:10.1089/crispr.2019.0021.