PUBLIC AWARENESS RESEARCH 2005: HUMAN HEALTH BIOTECHNOLOGY AUSTRALIA OCTOBER, 2005 Contents 1. Research context ............................................................................................ 1 Background .................................................................................................. 1 The nature of public attitudes .......................................................................... 1 Research design ............................................................................................ 2 2. Research findings ........................................................................................... 3 2.1 Gene technology in health and medicine ..................................................... 3 2.2 Views on use of gene technology in human health ........................................ 4 2.3 Using gene technology to produce medicine ................................................ 8 2.4 Using gene technology in human transplants ..............................................13 2.5 Attitudes towards gene therapy ................................................................18 List of Figures Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure 1. Methodology ............................................................................................ 2 2. Support for fields of gene technology application.......................................... 3 3. Awareness of applications ......................................................................... 5 4. Perceived usefulness of applications ........................................................... 6 5. Perceived risk associated with applications .................................................. 7 6. Acceptability of applications ....................................................................... 8 7. Awareness of using gene technology to produce medicine ............................. 9 8. Perceived usefulness of using gene technology to produce medicines ............10 9. Perceived risk associated with using gene technology to produce medicines ...11 10. Acceptability of using gene technology to produce medicines ......................12 11. Awareness of using gene technology in human transplants .........................13 12. Perceived usefulness of using gene technology in human transplants ...........14 13. Perceived risk associated with using gene technology in human transplants ..15 14. Acceptability of using gene technology in human transplants ......................16 15. Awareness and knowledge of technologies ................................................18 16. Perceived impact of technologies .............................................................19 17. Time frame for impact of technologies .....................................................20 Public Awareness Research 2005: Human Health 1. Research context Background Biotechnology Australia's Public Awareness Program aims to provide members of the community with the information they need to make more informed choices regarding the adoption of biotechnologies. Public attitudes are a crucial issue in the development of the Australian biotechnology sector, and public understanding of the science involved is important. However, there is as great a need for scientists (and policymakers) to understand the public's needs and concerns. Therefore, a need to understand the underlying drivers of community attitudes relating to biotechnology is crucial. The nature of public attitudes There has been a trend towards increasingly complex analysis of applications of technology from a simple risk-benefit analysis with some consideration of its ethical underpinnings, to a more considered analysis in terms of both the process of development and the outcomes (for individuals, industry and society) of the application. Five key factors have been identified that underlie the public's acceptance of applications of biotechnologies1. These are: Information — Information on what biotechnologies are and are not capable of, provided by a credible source. Regulation — Confidence that regulatory safeguards are in place to ensure the safety of the public and the environment. Consultation — A belief that the public has been appropriately consulted and given the opportunity for input into the development of biotechnology. Consumer choice — The ability of the consumer to either accept or reject each particular application of biotechnology. Consumer benefit — A perceived societal and individual benefit for each application. Finally, the rapid developments and advances in biotechnology mean that attitudes and acceptance relating to biotechnology, as well as the associations between them, are likely to change over time. It is important that these changes and explored and understood. To track these changes, research on behalf of Biotechnology Australia has been conducted every two years since 1999. This report provides details on the 2005 research conducted by Eureka Strategic Research. Social causes of public concerns about developments in biotechnology in Australia: Comparisons with other countries and lessons for Asia. By Craig Cormick. Accessed on the Biotechnology Australia website. 1 1 Public Awareness Research 2005: Human Health Research design A three-phase research program was employed, as illustrated in the following diagram. Figure 1. Methodology The CATI (Computer Assisted Telephone Interviewing) survey involved 1,067 respondents, between 18 and 75 years of age, which provided a 95% confidence interval of no more than ±3.0%. Survey respondents were selected from the electronic White Pages and were stratified by location (by state and territory, and then into capital and non-capital) to ensure that the sample was in proportion to the population. Broad age and gender quotas were also applied, within each location, once again to ensure the sample was proportionally representative. (More details on the research design are in the document Public Awareness Research 2005 Overview.) 2 Public Awareness Research 2005: Human Health 2. Research findings 2.1 Gene technology in health and medicine Respondents were asked to rate their level of support for the use of gene technology in human health and medical applications, as well as in food and agricultural applications, using a scale from 0 to 10, where 10 represents full support for the technology. The results are displayed in Figure 2. Figure 2. Support for fields of gene technology application As can be seen from the chart, there is no one "public view". Instead, members of the public hold diverse opinions in relation to the use of gene technology in both health/medical and food/agricultural applications. On the whole, health/medical applications received a greater number of higher scores, and food/agriculture received a greater number of lower scores. Accordingly, the mean level of support for health/medical (6.2) was higher than that for food/agriculture (4.9). Group discussions shed some light on why, in general, the use of gene technology in health/medical applications received more support than its use in food/agriculture. Most participants felt the use of gene technology in a medical context was acceptable and considered using it to treat disease and injury a 'noble' pursuit. For example, in relation to modifying human genetic material, one participant said: "For any legitimate medical purpose I think it's okay." With only a few exceptions, a technology's potential to save lives or significantly improve the quality of lives was valued highly. Participants acknowledged they were likely to find 3 Public Awareness Research 2005: Human Health almost any given technology acceptable if it were going to benefit one's self or loved ones. In relation to the transplant of pigs' heart valves, a participant noted: "It would have been acceptable to me at the outset because it saved my friend's life." The use of gene technology in medical applications was also considered by some, for a variety of reasons, to pose fewer risks. It was seen to be something that would be used infrequently, as opposed to on an everyday basis, and usually as a last resort. Furthermore, often such applications would be a patient's last hope for survival, at which point they would have little to lose and be willing to try anything. "By the time it gets to the stage it's so critical that anything would be acceptable." In addition, in terms of the process itself, participants mentioned that as it would be contained in scientific laboratories and hospitals, it posed somewhat less risk. Nevertheless, participants were wary of the risks involved and cautious of the way in which the technology could progress. Acceptance of any medical application was balanced by a need to be informed, and for strict regulation. 2.2 Views on use of gene technology in human health Respondents in the survey were asked a series of questions relating to different applications of biotechnology. For each set of applications, questions were asked regarding respondents' awareness, perceived usefulness, perceived risks and acceptability of the technology. Each question was first asked in relation to a general area (e.g. use of gene technology to produce medicines and in human transplants) and then more specifically in relation to the techniques used in that area. Here, results are presented for the general areas (Figures 3 to 6). This allows for comparison of the perceptions of the use of gene technology in producing medicines and in human transplants with those of other applications of gene technology. More detailed findings for the use of gene technology in these two areas provided in the following sections. 4 Public Awareness Research 2005: Human Health Figure 3. Awareness of applications The majority of respondents had heard of the use of stem cells in medical research (93.4%) and treating disease (85.5%), and using gene technology to modify food plants (75.8%). In contrast, the majority was not aware of the use of gene technology in producing medicines (60.5%) or in transplants (52.4%). 5 Public Awareness Research 2005: Human Health Figure 4. Perceived usefulness of applications Stem cell research and treatment were perceived as useful by the highest proportion of respondents (89.7% and 87.6% respectively). Genetically modified food was perceived as useful by the lowest proportion, but still a majority of respondents (63.7%). About three-quarters felt that the use of gene technology in human transplants (76.8%) and to produce medicines (72.5%) would be useful. 6 Public Awareness Research 2005: Human Health Figure 5. Perceived risk associated with applications Using gene technology to modify food plants was perceived to be risky by the highest proportion of respondents (71.3%). The majority did not perceive the use of stem cells in medical research (52.4%) or to treat disease (51.7%) as risky. The majority of respondents considered the use of gene technology to produce medicines (52.9%) and in human transplants (56.3%) to be risky, but just over a third disagreed in relation to each of these applications (34.9% and 37.5% respectively). 7 Public Awareness Research 2005: Human Health Figure 6. Acceptability of applications The majority of respondents found each of the applications of biotechnology to be acceptable, with the possible exception of genetically modified foods crops. The greatest proportion of respondents found the use of stem cells to treat disease (79.8%) and conduct medical research (80.0%) acceptable. Approximately as many respondents considered the use of gene technology to modify food plants acceptable (47.8%) as found it unacceptable (46.8%). 2.3 Using gene technology to produce medicine Respondents were asked their opinions about the use of gene technology to produce medicine. They were asked about their awareness, perceived usefulness, perceived risk and acceptability of using gene technology in this context. They were then asked their views on producing medicine by introducing human genes into animals and by introducing human genes into bacteria. The results are displayed in Figures 7 to 10. 8 Public Awareness Research 2005: Human Health Figure 7. Awareness of using gene technology to produce medicine While almost half (47.3%) was aware of producing medicines by introducing human genes, only a quarter (25.2%) claimed awareness of doing so by introducing human genes into bacteria. 9 Public Awareness Research 2005: Human Health Figure 8. Perceived usefulness of using gene technology to produce medicines Producing medicines was considered useful by fewer respondents once they had been prompted with the specific methods that could be utilised — dropping from almost threequarters (72.5%) indicating they thought it would be useful for producing medicines, to almost half (49.4%) if it involved introducing human genes into bacteria, to just less than two-fifths (38.4%) where introducing human genes into animals was involved. 10 Public Awareness Research 2005: Human Health Figure 9. Perceived risk associated with using gene technology to produce medicines Producing medicines was considered risky by a greater proportion of respondents once they had been prompted with specific methods; just over half (52.9%) perceived producing medicines as risky, increasing to almost two-thirds (64.5%) where it involved introducing human genes into bacteria and almost three quarters (73.8%) where it involved introducing human genes into animals. 11 Public Awareness Research 2005: Human Health Figure 10. Acceptability of using gene technology to produce medicines The acceptability of using gene technology to produce medicines was almost two-thirds (65.5%), but dropped to two-fifths (41.6%) for introducing human genes into bacteria and around a third (33.4%) for introducing human genes into animals. In general, participants in the qualitative research supported the use of gene technology in producing medicines, as this application offered the potential to reduce disease, helping individuals and society. Introducing human genes into bacteria and animals Once specific methods were raised in group discussions, participants' concerns increased. In particular, many participants had concerns bacteria and regarding the use of gene transfers across kingdoms. Participants also had fears relating to each of the specific methods. In terms of introducing human genes into bacteria, some participants raised concerns such as the potential to create a dangerous hybrid bacterium. There was also a fear that the bacteria could mutate the human genes. In terms of introducing human genes into animals, participants' comments were often reminiscent of science fiction. "It just sounds creepy — human genes and animals sounds like the island of Dr Moreau — sounds like a horror story." Some participants were also concerned that the introduction of human genes into animals may cause those animals pain and suffering. 12 Public Awareness Research 2005: Human Health 2.4 Using gene technology in human transplants After first gauging respondents' reactions to using gene technology in human transplants, their reactions to the use of specific techniques (transplanting animal parts into humans and transplanting human parts grown in animals back into humans) were determined. Results are displayed in Figures 11 to 14. Figure 11. Awareness of using gene technology in human transplants Awareness of using gene technology in human transplants was reasonably low (44.7%). However, this increased once people were prompted with the specific methods used, with the majority of respondents claiming they had heard of transplanting the body parts of animals into humans (83.0%) and transplanting human body parts grown in animals back into humans (70.6%). 13 Public Awareness Research 2005: Human Health Figure 12. Perceived usefulness of using gene technology in human transplants A large proportion (76.8%) felt that using gene technology in human transplants would be useful. However, this proportion decreased somewhat in relation to the specific techniques, with around two-thirds seeing the value in transplanting the body parts of animals into humans (64.4%) and transplanting human body parts grown in animals back into humans (63.5%). 14 Public Awareness Research 2005: Human Health Figure 13. Perceived risk associated with using gene technology in human transplants Over half (56.3%) the respondents felt that the use of gene technology in human transplants would be risky. This increased for each of the specific techniques used, with the majority believing transplanting the body parts of animals into humans (70.6%) and transplanting human body parts grown in animals back into humans (68.7%) would be risky. 15 Public Awareness Research 2005: Human Health Figure 14. Acceptability of using gene technology in human transplants About two-thirds of respondents (64.8%) thought it would be acceptable to use gene technology in human transplants. However, only around half felt that transplanting human body parts grown in animals back into humans (50.4%) and transplanting the body parts of animals into humans (49.3%) was acceptable. In the qualitative research, many participants were supportive of using gene technology in human transplants. They generally considered that in this context, the technology offered the potential to save human lives. Some also acknowledged the role that gene technology (as opposed to using human organ donors) could play in reducing the risk of organ rejection, particularly if the organs were able to be 'custom-made' for recipients. However, a small minority of participants felt this application of gene technology was unnecessary, as they perceived there to be sufficient, and probably increasing (due to government campaigns), availability of organs for transplant from human organ donors. There was concern about this application among some participants. Some expressed concern about an 'industry' of body parts developing. In part, this concern was based on examples from overseas where body parts were stolen from individuals and sold on the black market. "If it were a whole industry of creating body parts, I might be a bit squeamish about it." As the details of specific techniques were discussed, additional concerns arose among participants. Some suggested that certain groups would be opposed to this application on religious grounds, for example, it was anticipated that there would be concerns about transplants similar to those regarding halal or kosher foods, or those by groups that disapprove of blood transfusions. 16 Public Awareness Research 2005: Human Health Another concern that participants expressed was that this application had the potential to cause suffering to the animals involved. Some were concerned that animals would have to be sacrificed in order for this technology to be employed. Others noted that animals were slaughtered everyday for their meat and that it was much more acceptable to sacrifice an animal to save the life of a human, than simply as a source of food. For many, the image of the mouse growing the human ear on its back was brought to mind and they were concerned at the animal's likely discomfort. Another source of anxiety for participants was crossing the species barrier between animals and humans. Some participants felt uneasy mixing body parts (and genes) from different species. "I don't know, it just makes me cringe." "It's just a bit off-putting." Body parts of animals into humans Several participants believed that transplants involving body parts of animals being transplanted into humans were already taking place. These people drew on the example of pigs' heart valves (although some thought it involved the entire heart) being transplanted into humans. The view that this application (or at least similar applications) of gene technology was already the status quo made it more acceptable to many. "What about the heart valve operations with the heart valve from a pig? That's been going on for years and years. My friend had it done 20 years ago." "That's already being done . . . the ape hearts etcetera . . . that's been going on for a long time." Human body parts grown in animals into humans In contrast, participants generally agreed that human body parts grown in animals were not yet being transplanted back into humans. Some felt that this may be why they found the technique somewhat less acceptable, but that this may change in time. They acknowledged that new technology always takes time to become familiar and acceptable to the public, citing heart bypass surgery as an example. "In 20 years' time it may be commonplace and people won't give it a second thought." Despite these expressed concerns relating to the use of specific techniques, most participants acknowledged that their views about the acceptability would be balanced by the potential to save a person's life. For example, many stated that if it could save their life, or the life of someone they loved, then they would want it to be available. "If you're dying or in that situation, it's very different." "The bottom line is, I would like to think it were there if I needed it." "If it was a choice between having a pig's heart or dying, I'd be choosing the pig's heart — no question." 17 Public Awareness Research 2005: Human Health 2.5 Attitudes towards gene therapy Respondents in the survey were asked to indicate their self-assessed level of awareness and knowledge of gene therapy, as well as five other technologies — biotechnology, cloning, use of stem cells, genetic engineering and fibre optics. Results are shown in Figure 15. Figure 15. Awareness and knowledge of technologies Compared to other technologies, far more respondents (31.5%), reported not having heard of gene therapy, while just over a half (52.6%) claimed to have heard of it. The smallest proportion of respondents (15.9%) felt they knew enough about gene therapy that they could explain it to a friend. Respondents in the survey were then asked whether they believed each of the technologies was likely to improve our way of life in the future, have no effect or make things worse. The results are illustrated in Figure 16. 18 Public Awareness Research 2005: Human Health Figure 16. Perceived impact of technologies Placing it midway in relation to the other technologies, two thirds of respondents (66.9%) felt that gene therapy was likely to improve our way of life in the future. In addition, almost a fifth (18.9%) was not sure what impact it was likely to have. Last in this series of questions, for each of the technologies, respondents who indicated that they believed it would have some effect on our way of life (either positive or negative) were asked when they thought this would happen. The findings are shown in Figure 17. 19 Public Awareness Research 2005: Human Health Figure 17. Time frame for impact of technologies Compared to all other technologies, fewer respondents (43.0%) felt that gene therapy was already having an effect, with the majority considering that this technology was yet to have an effect. However, of these respondents, the greatest proportion (18.9%) indicated that they believed the effects were likely to be felt in the next five years. 20