International Perceptions and Approval of Gene Therapy

Abstract

Gene therapy is in clinical trials in a number of countries, raising the question of whether different ethical standards can be justified in different countries. One key issue is how divergent are the perceptions and bioethical reasoning of peoples around the world. An International Bioethics Survey with 150 questions, including 35 open ones, was developed to look at how people think about diseases, life, nature, and selected issues of science and technology, biotechnology, genetic engineering, genetic screening, and gene therapy. The mail response survey was conducted in 1993 among the public in Australia, India, Israel, Japan, New Zealand, Russia, and Thailand, and the same written survey was conducted among university students in Australia, Hong Kong, India, Japan, New Zealand, The Philippines, Russia, Singapore, and Thailand. Similar questions were included in an international high school education bioethics survey among high school teachers in Australia, Japan, and New Zealand. Further international comparisons to the United States and Europe are made. About three-quarters of all samples supported personal use of gene therapy, with higher support for children's use of gene therapy. The diversity of views was generally similar within each country. The major reasons given were to save life and increase the quality of life. About 5-7% rejected gene therapy, considering it to be playing God, or unnatural. There was very little concern about eugenics (0.5-2%), and more respondents gave supportive reasons like "improving genes," especially in Thailand and India. Support for specific applications was significantly less for "improving physical characters," "improving intelligence," or "making people more ethical" than for curing diseases like cancer or diabetes, but there was little difference between inheritable or noninheritable gene therapy.

Non-professionals’ evaluations of gene therapy ethics

“…Henderson & Maguire, 2000;Kerr, Cunningham-Burley & Amos, 1998;Richards, 1996;Richards & Ponder, 1996) or with surveying lay attitudes towards specific issues in genetic ethics (e.g. Macer, 1992;Macer et al, 1995;Michie, McDonald, & Marteau, 1996;Holm & Jayson, 2001). Relatively little attention has been paid to examining the factors affecting the moral reasoning of non-professionals when they reflect on genetic issues.…”

Genetic engineering: Moral aspects and control of practice

“…There have been many debates and surveys regarding the use of gene therapy. Opinion surveys are prone to bias and numbers may be misused in order to provide a scientific aura to reinforce preexisting views (77). There is a call for international approaches at regulating gene therapy trials.…”

“…The positions adopted in the 1994 report on gene therapy may be summarized as follows. This report has prompted an international survey to explore the public's reasoning about gene therapy (77). Interestingly, the diversity of comments was generally found to be the same in different countries, suggesting that reasoning about gene therapy goes deeper than cultures and religions.…”

Communicating in context: a priority for gene therapy researchers

“…In the 1990s and early 2000s, a number of studies used traditional methods such as surveys and interviews to measure public opinions and attitudes about gene therapy [5][6][7][8]. In a methodological shift that harnesses the interactive environment of new media, more recent research has investigated public attitudes towards the ethics of gene therapy in a way that is responsive to the latest developments in the field.…”