PUBLIC AWARENESS RESEARCH 2005: STEM CELLS 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 Awareness and knowledge of using stem cells ............................................. 3 2.2 Perceived impact of using stem cells ........................................................... 3 2.3 Views on use of stem cells......................................................................... 5 2.4 Using different types of stem cells for medical research ................................ 9 2.5 Using different types of stem cells to treat disease ......................................12 2.6 Understanding of different types of stem cells .............................................15 2.7 Medical research versus treating disease ....................................................17 2.8 Nuclear transfer ......................................................................................18 2.9 Trusted sources of information ..................................................................18 2.10 Attitudes towards applications.................................................................19 List of Figures Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure Figure 1. Methodology ............................................................................................ 2 2. Awareness and knowledge of technologies .................................................. 3 3. Perceived impact of technologies ................................................................ 4 4. Time frame for impact of technologies ........................................................ 5 5. Awareness of applications ......................................................................... 6 6. Perceived usefulness of applications ........................................................... 7 7. Perceived risk associated with applications .................................................. 8 8. Acceptability of applications ....................................................................... 9 9. Awareness of using stem cells in medical research ......................................10 10. Perceived usefulness of using stem cells in medical research ......................11 11. Perceived risk associated with using stem cells in medical research .............11 12. Acceptability of using stem cells in medical research ..................................12 13. Awareness of using stem cells to treat disease ..........................................13 14. Perceived usefulness of using stem cells to treat disease ............................13 15. Perceived risk associated with using stem cells to treat disease ...................14 16. Acceptability of using stem cells to treat disease .......................................15 17. Sources of trust ....................................................................................18 Public Awareness Research 2005: Stem Cells 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: Stem Cells 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: Stem Cells 2. Research findings 2.1 Awareness and knowledge of using stem cells Respondents in the survey were asked to indicate their self-assessed level of awareness and knowledge of using stem cells, as well as five other technologies — biotechnology, cloning, genetic engineering, gene therapy and fibre optics. Results are shown in Figure 2. Figure 2. Awareness and knowledge of technologies A relatively large proportion, at around a third of respondents (35.6%), felt they could explain the use of stem cells to a friend. The majority (58.1%) indicated that while they had heard of these technologies, they knew very little or nothing about them. Only a very small proportion (6.4%) claimed to have not heard of the use of stem cells. 2.2 Perceived impact of using stem cells 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 3. 3 Public Awareness Research 2005: Stem Cells Figure 3. Perceived impact of technologies The greatest proportion (82.3%) felt that the use of stem cells was likely to improve our way of life in the future. The fewest did not feel willing to comment (i.e. said 'don't know') on this issue in relation to the use of stem cells. Lastly 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 4. 4 Public Awareness Research 2005: Stem Cells Figure 4. Time frame for impact of technologies The majority of respondents considered that the use of stem cells would have an effect now or in the next five years (69.9%). 2.3 Views on use of stem cells 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 stem cells for medical research and for treating diseases) and then more specifically in relation to either the objectives sought or the techniques used in that area. Here, results are presented for the general areas (Figures 5 to 8). This allows for comparison of the perceptions of the use of stem cells with those of other applications of gene technology. More detailed findings for the use of stem cells are provided in the following sections. 5 Public Awareness Research 2005: Stem Cells Figure 5. 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%). 6 Public Awareness Research 2005: Stem Cells Figure 6. 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. 7 Public Awareness Research 2005: Stem Cells Figure 7. 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). 8 Public Awareness Research 2005: Stem Cells Figure 8. 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%). 2.4 Using different types of stem cells for medical research As outlined in the previous section, respondents were asked about their views on using stem cells in medical research. They were then asked about the use of different types of stem cells (i.e. either embryonic or non-embryonic) in the research context, looking at levels of awareness, then perceptions of usefulness, risk and acceptability. The findings are shown in the charts following, which should all be read in the context of each other. 9 Public Awareness Research 2005: Stem Cells Figure 9. Awareness of using stem cells in medical research Most respondents were aware of medical research using generic "stem cells" (93.4%), although awareness levels dropped for both the specific types of stem cells. Respondents were more familiar with medical research using embryonic stem cells (78.4%) than using non-embryonic (47.6%), or at the very least they were more familiar with the phrase "embryonic stem cells". 10 Public Awareness Research 2005: Stem Cells Figure 10. Perceived usefulness of using stem cells in medical research Most respondents (89.7%) considered that using stem cells to conduct medical research was useful. However, once prompted with specific types of stem cells, fewer felt the application was likely to be useful and more were uncertain (i.e. said "don't know") of the application's usefulness. Similar proportions felt that the use of non-embryonic stem cells (72.4%) and embryonic stem cells (75.9%) would be useful. Figure 11. Perceived risk associated with using stem cells in medical research 11 Public Awareness Research 2005: Stem Cells Only just over a third of respondents (38.6%) felt that using stem cells to conduct medical research would be risky. This increased slightly for research using embryonic stem cells (43.1%), but decreased slightly for non-embryonic stem cells (33.8%). In addition, the proportion of respondents uncertain of the potential risk increased in relation to the specific types of stem cells, reaching almost a fifth (17.9%) for nonembryonic stem cells. Figure 12. Acceptability of using stem cells in medical research A large proportion (80.0%) of respondents found the use of stem cells to conduct medical research acceptable. This dropped for the specific types of stem cells, although a slightly greater proportion remained accepting of non-embryonic (68.9%) than embryonic (63.5%) stem cells. In addition, a greater proportion of respondents were uncertain of the acceptability of medical research in terms of the specific types of stem cells. 2.5 Using different types of stem cells to treat disease As outlined above, the survey also asked respondents to consider the application of using stem cells to treat disease, and specifically, in terms of using embryonic and nonembryonic stem cells. As can be seen from charts displayed in Figure 13 to Figure 16, the pattern of findings was very similar to that obtained in relation to using stem cells in medical research. 12 Public Awareness Research 2005: Stem Cells Figure 13. Awareness of using stem cells to treat disease Most respondents (85.5%) were aware of stem cells being used to treat disease. This dropped to three-quarters (74.4%) for awareness of the use of embryonic stem cells, and just under half (48.8%) for the use of non-embryonic stem cells, to treat disease. Figure 14. Perceived usefulness of using stem cells to treat disease 13 Public Awareness Research 2005: Stem Cells Most respondents (87.6%) felt that using stem cells to treat disease would be useful. This proportion dropped somewhat in relation to the use of embryonic (76.4%) and nonembryonic (72.7%) stem cells. Again, when specific types of stem cells were asked about, a greater proportion of respondents was uncertain as to whether their use in treating disease was likely to be useful, particularly in relation to non-embryonic stem cells (19.6%). Figure 15. Perceived risk associated with using stem cells to treat disease Just over a third (37.0%) felt that using stem cells to treat disease would be risky. This rose slightly for the use of embryonic stem cells (42.1%) and dropped slightly for nonembryonic stem cells (32.9%). Over a fifth (21.3%) indicated that they were unsure of the risk posed by non-embryonic stem cells in treating disease. 14 Public Awareness Research 2005: Stem Cells Figure 16. Acceptability of using stem cells to treat disease A large proportion (79.8%) of respondents considered the use of stem cells to treat disease acceptable. The figures were somewhat lower for embryonic (65.1%) and nonembryonic (68.2%) stem cells. Again, a larger proportion of respondents was uncertain of whether these applications were acceptable to them when asked about the use of specific types of stem cells. 2.6 Understanding of different types of stem cells Awareness and knowledge about stem cells varied considerably within the groups. Most participants needed additional information in order to judge the acceptability of the applications, particularly in relation to the distinction between embryonic and nonembryonic stem cells. After participants' existing understanding was explored, a definition, standard to all groups, was read to participants. For many participants, stem cells were something they had heard about, but given little thought to. In particular, many participants had not given any thought to the origin of stem cells. Many were unaware of the existence of different kinds of stem cells, let alone had any understanding of the difference between them, for example, in terms of their origins. There was greater familiarity with the term "embryonic stem cells", whereas few were familiar with the term (or concept) of "non-embryonic stem cells". Embryonic stem cells With regard to embryonic stem cells, there was a variety of beliefs about their source. The knowledge of some participants was accurate, if a little basic or hazy. For example, participants mentioned that embryonic stem cells came from "a birth that's not going to proceed". A few participants were aware that embryos left over from IVF were often the source. Other participants believed that embryonic stem cells came from a foetus (actually a source of non-embryonic stem cells). Often this misunderstanding appeared 15 Public Awareness Research 2005: Stem Cells to be a result of participants' confusion over the terms "embryo" and "foetus", believing they were one and the same. "I don't think people know that embryonic is a foetus." Another segment of participants believed that umbilical cords were the source of embryonic stem cells (actually a source of non-embryonic stem cells). This misunderstanding appeared to be based upon the association of both of these terms — "embryonic" and "umbilical cord" — with babies. For any given purpose, acceptability of the use of embryonic stem cells appeared to depend upon several factors. Not surprisingly, participants' perception of the origin of stem cells (i.e. from an embryo, foetus or umbilicus) had a great impact on whether they considered their use to be acceptable (this is discussed below in more detail in relation to non-embryonic stem cells). When informed that embryonic stem cells are derived from embryos, participants' concept of an embryo became influential. In particular, participants' perception of the 'age' of an embryo influenced whether they found the use of embryonic stem cells acceptable. If they considered an embryo to be a clump of cells, and little more, then it was more acceptable; if they believed it to be (or if it conjured up the image of) a baby, then they were less likely to be acceptable. [With respect to the age of an embryo] "I think there's set guidelines and you can't go more than two or four days, that's fine by me." Furthermore, participants' view of the point at which life begins, which was sometimes linked to their religious beliefs, had an impact on whether they found the use of embryonic stem cells acceptable. "Where do you draw the line between human being and embryo?" "An embryo is a human being that has not been born." This was also sometimes related to participants' misunderstanding of the 'age' of an embryo, that is, if they saw an embryo more as a baby rather than a clump of cells, they were more likely to believe that its life had begun. However, some participants felt that life started as soon as fertilisation had occurred. Therefore, even the use of stem cells derived from a clump of cells was seen by these participants to be ethically wrong. Finally, participants' opinions of the acceptability of using embryonic stem cells depended upon the intention in creating the embryo. If the embryo was seen to have been specifically created for purpose of obtaining stem cells, most participants were unsupportive. This was due to their perception that it was wrong to create life, purely to harvest from it or destroy it. "I would have a problem if they were creating embryos just to harvest, but if it's incidental, I don't have a problem with that." In contrast, where participants were asked about the use of embryos left over from InVitro Fertilisation (IVF), many were supportive, providing that parental consent had been obtained. On the whole, participants felt that it would be better to see the embryos being used for "good", rather than going to waste. 16 Public Awareness Research 2005: Stem Cells "If they are going to just throw them out then I would rather see them put to good use." However, due to a lack of understanding of the IVF process and issues involved, some were concerned that the extra embryos should not have been created for IVF until they were needed. Non-embryonic stem cells While participants generally had little unprompted awareness of "non-embryonic stem cells", they had views regarding the use of them. Participants were very accepting of the use of stem cells derived from the umbilicus (again, provided parental consent had been obtained). The umbilicus was considered a naturally occurring by-product that would otherwise go to waste. "The baby survives — it's unwanted matter." Some participants appeared to view it as having almost magical healing properties. Without exception, participants agreed that deriving stem cells from the umbilicus would harm no one, and would have the potential to be used for noble causes. The use of stem cells extracted from an adult was also considered acceptable, providing the adult gave his or her consent. Participants' opinions regarding the acceptability of using stem cells derived from foetuses were mixed, with the issues considered similar to those outlined for embryonic stem cells. That is, participants' views depended upon their understanding of what a foetus is (especially its 'age'), their beliefs about when life begins and the knowledge of what would otherwise happen to the foetus. "I think it's killing babies so I can't support it at all." 2.7 Medical research versus treating disease Aside from these other issues, acceptability of using stem cells depended largely on the proposed use and context. If it is related to the treatment of serious injury and/or disease it is generally supported, particularly if it is a matter of life or death. In particular, participants acknowledged that it would be difficult to assert that this application was not acceptable until you had "walked a mile in the shoes" of a person who was in a position to need it. In particular, if one or one's family was in a position in which one's quality of life could be drastically improved or saved, one was almost certain to find the application acceptable, perhaps even in spite of strong ethical concerns. "I'm happy to state in principle what I believe about stem cells but I may give you a different answer depending on the context of the specific situation." Issues relating to use of stem cells in medical research and treating disease were considered essentially the same, with the former simply being the precursor of the latter. There was an exception raised in one of the groups where a participant expressed concern over what should be considered a disease worth "eradicating". This participant raised the example that some conditions (e.g. deafness, autism) considered burdensome or undesirable by some, are considered a blessing by others. It was her view that, beyond the major diseases like AIDS and cancer, this application could become a minefield. 17 Public Awareness Research 2005: Stem Cells 2.8 Nuclear transfer There is a very low level of understanding of the term 'therapeutic cloning' or 'nuclear transfer', which makes it difficult to explore attitudes without first taking an audience through an explanation of the science. Also, in the absence of understanding, people tend to make an 'emotive' judgement and for therapeutic cloning, the term 'cloning' is far more negatively weighted than the term 'therapeutic' is positively weighted. The term 'cloning' is not particularly useful in advancing public debate in relation to stem cell applications, since it brings to mind the creation of entire humans and sheep. These are seen as examples of science out of control, pursued for its own sake. So-called therapeutic cloning and even plant cloning (enormously widespread since antiquity) are tainted by association. 2.9 Trusted sources of information Survey respondents were asked to name the information source (from the list provided below) in which they had the most confidence in relation to total biotechnology applications, not just stem cell applications. These results are provided in Figure 17. Figure 17. Sources of trust The greatest proportion (41.1%) named the CSIRO as the source of information in which they had the most confidence; scientists (10.3%) and universities (9.7%) were a distant second and third respectively. The sources that the fewest people nominated as having the most confidence in were industry (0.2%) and the media (0.6%). 18 Public Awareness Research 2005: Stem Cells Throughout the discussions, looking at wider uses of gene technology, participants frequently reported needing more information in order to judge the acceptability of various applications. Generally, participants were conscious that their initial judgements were based on limited understanding of the technology and associated issues. Although most participants had heard of the applications of gene technology, they had little to no understanding of what they actually involved. Participants expressed a need for more information about the techniques involved and the context of their application, in particular the purpose. For example, one participant said she would need to know: "They need to explain what they are doing and what is it for?" 2.10 Attitudes towards applications A general pattern can be seen across almost all the results of the total survey, that people recognise a worthy objective and are generally supportive of pursuing it, despite concerns. If an objective is not perceived to be valuable, is not stated, or if there are perceived to be other means by which the objective could be achieved, people do not generally support it, given the perceived risks or ethical concerns involved. (See report Public Awareness Research 2005: Cloning). 19