Prevailing Public Perceptions of the Ethics of Gene Therapy

Abstract

Gene therapy research is advancing rapidly, and hopes of treating a large number of brain disorders exist alongside ethical concerns. Most surveys of public attitudes toward these ethical issues are already dated and the content of these surveys has been researcher-driven. To examine current public perceptions, we developed an online instrument that is responsive and relevant to the latest research about ethics, gene therapy, and the brain. The 16-question survey was launched with the platform Amazon Mechanical Turk and was made available to residents of Canada and the United States. The survey was divided into six themes: (1) demographic information, (2) general opinions about gene therapy, (3) medical applications of gene therapy, (4) identity and moral/belief systems, (5) enhancement, and (6) risks. We received and analyzed responses from a total of 467 participants. Our results show that a majority of respondents (>90%) accept gene therapy as a treatment for severe illnesses such as Alzheimer disease, but this receptivity decreases for conditions perceived as less severe such as attention deficit hyperactivity disorder (79%), and for nontherapeutic applications (47%). The greatest area of concern for the application of gene therapy to brain conditions is the fear of not receiving sufficient information before undergoing the treatment. The main ethical concerns with enhancement were the potential for disparities in resource allocation, access to the procedure, and discrimination. When comparing these data with those from the 1990s, our findings suggest that the acceptability of gene therapy is increasing and that this trend is occurring despite lingering concerns over ethical issues. Providing the public and patients with up-to-date information and opportunities to engage in the discourse about areas of research in gene therapy is a priority.

Understanding opposition to human gene editing

“…As noted earlier, attitudes toward gene editing reflected two broadly distinct-albeit moderately correlatedlatent factors concerning treatment and enhancement. This finding had been hinted at in recent work (Gaskell et al, 2017;Robillard et al, 2014;Xiang et al, 2015), but prior to the current study had not been formally established. As such, these results indicate that future research into gene editing attitudes should consider using distinct scales with regard to these issues as well as seeking to further understand and establish the latent architecture of attitudes in this domain.…”

Attitudes of Members of Genetics Professional Societies Toward Human Gene Editing

“…These findings are consistent with public opinion polls. 30,[32][33][34][35][36][37][38][39][40][41] Moving forward, there will be a need to define more precisely what conditions constitute a ''therapeutic application''; this is an important area of future study.…”

“…Several recent studies have examined public attitudes toward human gene editing in the United States, Canada, the United Kingdom, Japan, and China. [30][31][32][33][34][35][36][37][38][39][40][41] A metaanalysis of U.S. public opinion polls 30 found that most Americans favor somatic editing for clinical use in patients with serious diseases, with fewer supporting germline editing.…”

Communicating in context: a priority for gene therapy researchers

“…As both studies took place through online platforms, it is important to acknowledge the limitations of our samples: while both Yahoo! Answers and Amazon's Mechanical Turk boast high Adapted from [10], with permission.…”

“…A subsequent online survey explored the ethics themes expressed on Yahoo! Answers in greater depth [10]. Results from these studies are discussed in this article.…”