UC Irvine

This study was designed to assess the mitochondrial disease community’s knowledge, attitude and perception of mitochondrial replacement therapy (MRT) and determine how the media can impact such perception. MRT in conjunction with in vitro fertilization (IVF) has the ability to prevent inheritance of mitochondrial DNA (mtDNA) mutations from mothers to their offspring by using a donor egg’s mtDNA. The Federal Drug Administration (FDA) is considering human trials for MRT, dubbed “three-parent IVF” by the media. Approval relies heavily on the mitochondrial disease community’s willingness to participate; however, the community’s perceptions of risks, benefits and limitations associated with MRT have not been adequately addressed.

An anonymous survey was distributed online to individuals within the mitochondrial community; 165 individuals completed the survey and comprised the study population. The majority of individuals found MRT ethical, agreed with FDA approval for human clinical trials, and would be willing to use MRT if clinically appropriate and available. However, almost half were unaware that MRT is only useful if a mtDNA mutation has been previously identified. Many respondents knew this technique does not change physical or personality traits of offspring; however, those who believed it did also felt more strongly that this technique is “designing babies”. Interestingly, the majority did not believe that the children born using MRT have three parents, so the media’s use of “three-parent baby” may be unnecessarily sensationalized. Our results provide evidence that the mitochondrial disease community is forward-thinking about MRT; however, may not be adequately aware of MRT’s risks or limitations.