Defining public attitudes and understanding of human gene therapy in Australia

Abstract

Since the mid-1900s, breakthroughs in the accuracy and efficiency of gene altering technologies have rapidly advanced the field of human gene therapy (HGT). HGT as a treatment modifies specific genes to eliminate common illnesses and improve the quality of life of many individuals, previously not thought possible. However, HGT does not come without risk. Medical risks range from an ineffective treatment to one that could either disable or kill the patient. There are also ethical and moral issues pertaining to informed consent and the effect of these modifications on future generations. With the advent of HGT, the implications are now extremely broad, ranging from personal to societal. The complexity of this technology is such that its mere existence brings into play complex ethical questions that are often reflected in public discourse. In order to answer key ethical and risk-assessment questions, representative data on public beliefs, attitudes and opinions towards HGT and gene editing is required.

This is the first Australian study that provides a snapshot of Australian's attitudes of HGT and their willingness to accept the wide variety of procedural applications and implications of this technology. To achieve this goal, two surveys using different collection methods were published. The first was a national online survey which used chain-sampling via major social media platforms in 2017, with 553 completed responses returned. The second survey was based on a mail-out of households in the Australian Capital Territory (ACT) in 2019, this received 170 completed responses. A central finding of this study was a general positivity in Australians' acceptance towards all human gene-editing applications, with a strong preference towards procedures to treat a severe medical condition, as opposed to procedures for personal enhancement or prevention of potential adverse conditions. This acceptability diminished with declining severity of the medical condition. In each case, enhancement and prevention procedures were viewed as less acceptable than therapeutic applications. Demographic associations were also identified in both surveys, with females in both surveys significantly less likely to find HGT acceptable across all Likert questions. Using two different sampling methods also allowed for a comparative assessment of the survey population demographic profile and response rates received using each data collection strategy. Little difference was observed between the two demographic profiles and response rates. These results build on and reflect findings of similar national and international public opinion studies and provide a more complete picture of current Australian sentiment. Show more