community attitudes to biotechnology report on health web viewthe nature of community attitudes. ......

COMMUNITY ATTITUDES TO BIOTECHNOLOGY REPORT ON HEALTH AND MEDICAL APPLICATIONS

PREPARED FOR BIOTECHNOLOGY AUSTRALIA

EUREKA PROJECT 4001

Contents1. Research Context.......................................................................................1

Background................................................................................................................1

2. Research Design........................................................................................3A multi-stage research program................................................................................3Sample.......................................................................................................................4

3. Research Findings......................................................................................6Overall awareness and perceptions of biotechnology in the area of health and medicine....................................................................................................................6Awareness and perceptions of using stem cells.......................................................19Awareness and perceptions of using gene technology to produce medicines..........23Awareness and perceptions of using gene technology in human transplants..........27Response to media stories relating to the role of genes in human behaviour..........31

4. Conclusions..............................................................................................34

Appendix A - Exploratory Group Notepad Exercise.........................................351. Your kids are ratbags? Them's fightin' genes.......................................................352. Don't feel guilty 'it's in the genes'........................................................................353. 'Gene for panic attacks'.......................................................................................364. Reading skills are in the genes, study shows.......................................................375. Gene mutation may raise the risk of alcoholism..................................................386. Violence Gene......................................................................................................38

Community Attitudes to Biotechnology Report on Health and Medical Applications

1. Research ContextThis section outlines the background to the project, and specifies our understanding of the research objectives

BackgroundBiotechnology Australia

Biotechnology Australia is a multi-departmental Australian Government agency responsible for managing, with its partners, the National Biotechnology Strategy (NBS) and coordinating non-regulatory biotechnology issues for the Australian Government. Biotechnology Australia's goal is to ensure Australia captures the benefits arising from the medical, agricultural and environmental application of biotechnology, while protecting the safety of people and the environment.

Importance of community attitudes

Community attitudes are a crucial issue in the development of the Australian biotechnology sector. If Australians are not in favour of certain applications of biotechnology, efforts made by scientists on research and development will be constricted, and a host of potential benefits in fields ranging from medicine to food to textiles are likely to be lost. There is a need to understand the underlying drivers of community acceptance of biotechnology and ways in which public rejection of biotechnology may be minimised - both to inform the public about biotechnology and to inform scientists of the public's needs and concerns

The nature of community attitudes

Research has shown that it is no longer sufficient to ask broad questions relating to attitudes towards, or acceptance of, biotechnology per se, as these measures vary markedly for different applications of biotechnology and gene technology. Issues that may be taken into account when evaluating an application are:

Potential harm to humans, animals or the environment

Regulation and control of the process of development

Scope of benefits: humanity, scientific career advancement, or corporate profit

Potential for unforeseen outcomes to occur

Trade-offs may occur among these factors. For instance, harm to animals may be acceptable to some if the application can save human lives, but not if it only is for corporate profit.

The need for research

This research represents the fifth wave of Biotechnology Australia's ongoing attitudinal research. As such, it is an opportunity to identify and understand any new issues that have arisen, as well as any changes in community attitudes and their drivers, since 2005. The increased understanding of social drivers of attitudes regarding biotechnology will be used to identify differences in the various audiences and stakeholders. Finally, the

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research will enable the success of some aspects of the Public Awareness Program to be measured.

The enhanced understanding of community attitudes and concerns that will result from this research will be used to guide the further development of the Public Awareness Program. It will uncover any significant changes, new problem areas and priority targets in terms of public attitudes to be addressed. It will also provide information on the most effective means by which information can be imparted, and guidance in terms of the conduct of further community consultations.

Research objectives

Overall, the aim of this project was to update and further develop understanding of the community's awareness of, attitudes towards and concerns about different applications of biotechnology, and the ways in which these drive community acceptance. In addition, research aimed to understand community aspirations for biotechnology, information sources, and the success of current public information and awareness strategies.

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2. Research DesignIn this section, details of our proposed research design are provided, as well as our rationale for using this methodology

To meet these objectives, a multi-stage quantitative-qualitative methodology was undertaken, as illustrated in the following diagram.

A multi-stage research programInitially a brief literature review was conducted to ensure that Eureka was fully aware of any new developments in the area of biotechnology. Following this, a phase of exploratory qualitative research was conducted in order to identify issues, attitudes, motivations and behaviours which may have arisen since the last wave of the research. Quantitative research was then carried out to measure the incidence of awareness, perceptions and attitudes relating to biotechnology. This phase utilised a split sample CATI/ online methodology. Finally, an explanatory phase of qualitative research was conducted in order to investigate and explain in detail the findings from the survey.

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SampleExploratory qualitative phase

The sample structure for the exploratory qualitative research is shown in the table below.

Table 1. Sample structure for exploratory qualitative research

Age

18-30 years 31-65 years

Education level Non-tertiary Sydney Wagga WaggaTertiary Wagga Wagga Sydney

This phase comprised of four discussion groups, with the variables of education, age and location (metropolitan and non-metropolitan) factored into the structure. The discussion groups were 2 hours in duration, and all participants received an incentive of $70.

Quantitative phase

This phase of the research has traditionally been conducted over the telephone via CATI (Computer Assisted Telephone Interviewing). This wave, however, Biotechnology Australia sought to migrate the study to an online methodology. For a survey of this length, an online methodology is beneficial to participants, as they are able to complete the survey at a time of their choosing and over multiple sittings if desired. There are also notable cost savings.

A split CATI/online sample methodology was deemed the most prudent approach to facilitate the migration as this would enable clean comparison of data over time. The total sample consisted of 1,067 Australians between 18 and 75 years of age. Approximately half the interviews (n=534) were conducted via CATI and the other half (n=533) were conducted online.

The telephone sample was recruited using List Assisted Random Digit Dialling (LARDD) methodology, to yield a more representative sample than the Electronic White Pages (EWP). The sample was stratified by location (nationally by state/territory and, within these, by rural/regional/metropolitan areas) in such a way that the sample was in proportion to the population. In addition, within each location stratum, broad age and gender quotas were applied, again proportional to the population. Sampling methods employing a disproportionate chance of selection were used to deal with groups who were known to be less inclined to do surveys or more difficult to contact (e.g. males and younger persons) in order to be representative. Importantly, this approach mirrors the approach of the previous wave of research, thus ensuring comparability. The questionnaire averaged 29 minutes duration. For the online methodology, samples were sourced from an online panel, that is, individuals who have opted to receive email invitations to participate in surveys from our fieldwork supplier. Stratification and quota sampling occurred as per the telephone methodology.

Explanatory qualitative phase

The sample structure for the explanatory qualitative phase was based on two main variables, location and level of support, and is presented below. In the recruitment process, participants were required to rate their attitude towards the use of gene technology in today's society on a scale of 0 to 10 (where 0 is completely opposed and 10

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is fully supportive). Once again, the duration of the groups was 2 hours, and a $70 incentive was provided.

Table 2. Sample structure for explanatory qualitative research

Location

Bathurst Sydney (City) Hurstville

Level of support Low 31-65 years 18-30 years 31-65 yearsMedium 18-30 years 31-65 years 18-30 yearsHigh 18-30 years 18-30 years 31-65 years

In the following chapter, results from the qualitative and quantitative phases are combined and presented together for each issue.

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3. Research FindingsThis section presents the findings for community attitudes and perceptions of health and medical applications of biotechnology

This section details the findings from the quantitative and qualitative phases of research pertaining to health and medical applications of biotechnology. Where it would assist the reader to understand the research findings, verbatim quotations from research participants have been included to illustrate the range of views typically expressed.

The findings cover overall awareness and perceptions of biotechnology in the area of health and medicine, as well those specifically relating to the use of stem cells, the use of gene technology to produce medicines and the use of gene technology in human transplants. There is also an examination of the response to media stories relating to the roles of genes in human behaviour.

The following points are relevant to the interpretation of the quantitative findings:

Data from telephone interviews (not online) has been used for this wave's analysis, in order to ensure methodologically consistent data are compared over time. Previous waves of research were conducted over the telephone.

Significant trends over time are denoted with a circle (increase) or box (decrease)

A number of questionnaire changes were made to meet the needs of stakeholders involved in the research. Comparisons over time are therefore only possible for some questions.

One important change was that definitions of biotechnology, gene technology and genetic modification were provided at the commencement of the survey questionnaire and before each of the later focus groups. This was done at the request of stakeholders, to avoid any ambiguity in meaning when using these terms.

Overall awareness and perceptions of biotechnology in the area of health and medicineKnowledge and awareness of technology terminology

Participants in the survey were asked to indicate their self-assessed level of awareness and knowledge of six technologies, including three specifically related to biotechnology in the area of health and medicine - gene technology, stem cell research and cloning. The remaining three technologies were IVF, biotechnology and genetic modification. Results for the current wave are shown in Figure 1 and results comparing the current wave with Wave 4 are shown in Figure 2.

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Figure 1. Understanding of technology terminology

Base: all CATI (n=534)

Comparing all technologies, participants' self-assessed level of knowledge was highest for IVF, with 59% indicating that they could explain the technology to a friend, and lowest for biotechnology, with 18% indicating as such. Awareness of all technologies was fairly high, with the proportion indicating they had at least heard of each technology ranging from 78% (biotechnology) to 97% (cloning).

Comparing technologies relating specifically to biotechnology in the health and medical field, participants indicated the highest self-assessed level of knowledge for cloning. One in two (50%) reported that they could explain cloning to a friend, while one in three (35%) did so for stem cell research and one in five did so (22%) for gene technology.

Awareness of both cloning and stem cell research was very high, with more than nine in ten (cloning 96%, stem cell research 93%) indicating that they had at least heard of each technology. Awareness of gene technology was somewhat lower at 79%, leaving one in five (21%) participants who had not heard of this term.

Analysis1 was conducted on the relationship between demographic and psychographic variables, and knowledge of technology terminology. Table 3 below summarises the subgroups found to be significantly more likely to indicate being able to explain a technology to a friend. In sum, those who felt comfortable with new technologies expressed greater technology knowledge than those who did not feel comfortable, those participants who were university educated had greater self-assessed knowledge than those who were not, and finally, males were more likely to indicate being able to explain technologies to a friend than females.

1 Pearson Chi square tests were conducted to test the significance of the relationship between variables. This test compares the actual frequencies of the cross tabulation to the frequencies we would expect if there was no relationship between the variables. Those relationships that have a probability of being due to chance that are less than 5% are described as being statistically significant.

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Table 3. Predictors of knowledge of terminology

More likely to be able to explain to a friend

Item Subgroup % Total for item %

Technophiles (new technologies excite me more than they concern me)

Genetic modification 44 35Stem cell research 42 35Gene technology 32 22Biotechnology 28 18

Technophiles (technological change happens too fast for me to keep up with it)

Cloning 64 50

University educated Cloning 60 50Genetic modification 48 35Stem cell research 45 35Gene technology 31 22Biotechnology 27 18

Males Cloning 55 50Stem cell research 41 35Gene technology 26 22Biotechnology 26 18

As demonstrated in Figure 2 below, there have been no significant changes from last wave in self-assessed knowledge of cloning, stem cell research or biotechnology2.

2 Other technologies were not included in the 2005 survey8


Figure 2. Understanding of technology terminology - trends over time

Base: all CATI 2005 (n= 1,068) 2007 (n=534)* 2005 Use of stem cells

Perceptions of technologies

Participants in the survey were subsequently asked whether they believed each of the same 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.

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Figure 3. Perceived future impact of technologies on our way of life

Base: all CATI (n=534)

Of all technologies, participants were most likely to predict that stem cell research would have a positive future impact on our way of life. Indeed, almost nine in ten (87%) indicated that it would improve our way of life, while only 5% felt that it would make things worse. Predictions for gene technology and biotechnology were positive from the majority of participants, with 73% and 68% respectively signifying that these technologies would improve our way of life, and only a small number (10% and 8% respectively) predicting things being made worse. Positive future perceptions were markedly lower for genetic modification (45%) and again for cloning (28%), while negative future perceptions were correspondingly higher (29% and 48%).

Participants were least able to respond to this question in relation to biotechnology and genetic modification.

Analysis3 was conducted on the relationship between demographic and psychographic variables, and positive perceptions of technologies. Table 4 below summarises the subgroups found to be significantly more likely to view technologies improving our way of life in the future. In sum, those who feel more comfortable with new technologies had more positive outlooks for technologies in the future than others, males had more positive perceptions of cloning and genetic modification than females, females had more positive perceptions of IVF than males, and lastly, those who are university educated and those aged 18-30 were more likely than others to predict that cloning will have a positive impact on our future way of life.

Table 4. Predictors of positive perceptions of technologies

Will improve our way of life in the future


'Technophiles' (new technologies Biotechnology 77 68

3 Pearson Chi square tests were conducted using a significance criterion of p<.0510


Will improve our way of life in the future


excite me more than they concern me)

Gene technology 82 73Genetic modification 61 45Cloning 34 28Stem cell research 94 87IVF 88 83

Males Cloning 33 28Genetic modification 52 45

Females IVF 86 83University educated Cloning 34 2818-30 Cloning 39 28

Figure 4 below presents the results over time for the applicable items in this question.

Figure 4. Perceived future impact of technologies on our way of life - trends over time

Base: those aware CATI* 2005 Use of stem cells

There have been significant increases in positive perceptions of the future impact of stem cell research (up from 82% to 87%), biotechnology (up from 60% to 68%) and cloning (up from 19% to 28%).

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Aspirations for biotechnology in the health and medical field

This wave of the research saw the addition of a new discussion topic on aspirations for biotechnology. Participants were initially asked what kind of breakthroughs and benefits that biotechnology might provide in the future. The majority of participants made references to medical breakthroughs, such as cures for diseases, providing a better quality of life, increasing the availability of organs for transplant, understanding the causes of diseases, curing plant diseases and improving prosthetics or mechanical limbs.

[WHAT KIND OF BREAK THROUGHS DO YOU THINK BIOTECHNOLOGY MIGHT PROVIDE IN THE FUTURE?] Helping paraplegics, quadriplegics possibly...Finding cures for certain illness or diseases and the cause of it, including in plant life.

Support for gene technology in health and medicines

Survey participants indicated their overall support for the use of gene technology in the area of health and medicine by providing a rating out of 10, where 0 indicated that they were 'completely against it' and 10 indicated that they were 'fully supportive'. The frequency distribution chart (Figure 5) below presents the results from this wave, alongside those from Wave 4.

Figure 5. Overall support for the use of gene technology in human health and medical applications today

Base: All CATI, 2005 n=1,068, 2007 n=534

As indicated in the legend of the chart, there was a significant increase since last wave in the mean rating of support for the use of gene technology in human health and medical applications. The average rating given by participants in the current wave was 6.9 out of 10, while the average rating given in 2005 was 6.1.

There was a notable increase in the proportion of participants rating themselves 'fully supportive' of gene technology in human health and medical applications, up from 14% in

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2005 to 23% in 2007. There was a corresponding decline in the proportion of participants giving a support rating of 5 or lower. Only 3% of participants noted that they were 'completely against it'.

Analysis4 was conducted to determine any demographic or psychographic differences in overall support. Results are summarised in Table 5 below. In sum, overall support for the use of gene technology in health and medical applications was significantly greater among males and among those who are more excited than concerned by new technologies.

Table 5. Subgroup differences in level of overall support

Mean overall support Item Subgroup mean rating

Overall mean rating for

item

Males Health and medical 7.3 6.9Technophiles (new technologies excite me more than they concern me)

Health and medical 8.1 6.9

Awareness and perceptions of applications of biotechnology

Participants in the survey were asked a series of questions relating to different applications of biotechnology. For each set of applications, questions were asked regarding participants' 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 the techniques used in that area. Here, results are presented for the general areas (Figures 6 to 9). This allows for comparison of the perceptions of the use of stem cells with those of other applications of gene technology. More detailed findings relating to stem cell research, the use of gene technology to produce medicines and the use of gene technology in human transplants are provided in the following sections.

4 Anova tests and Spearman's correlation were conducted where appropriate using a significance criterion of p<.05

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Figure 6. Awareness of general applications

Base: rotated questions CATI

The majority of participants were aware of all applications of biotechnology. Awareness of stem cells was particularly high, at 95%. Seven in ten were aware of the use of gene technology to produce medicines (70%), and just fewer (68%) of the use of gene technology in human transplants. This represented a lower level of awareness than for GM food applications (modifying the genes of plants to produce foods, 85%; using biotechnology in the production of food from plants, 74%), but a higher level of awareness than for the non-food genetic modification application (55%).

A summary of demographic and psychographic differences5 in awareness of applications is presented in Table 6. In sum, there was significantly higher awareness of GM food crops and GM non-food crops among males, but significantly higher awareness of use of gene technology in human transplants among females.

Table 6. Subgroup differences in awareness of applications

Awareness Item Subgroup % Total for item %

Males GM food crops 91 85GM non-food crops

66 55

Females Human transplants

73 68



Figure 7. Perceived usefulness of general applications


There were very high perceived levels of utility for the three medical applications of biotechnology, with 96% claiming that the use of gene technology for medicines and the use of stem cells for conducting medical research and treating disease were useful. Only slightly fewer, 91%, indicated that using gene technology in human transplants was useful. Levels of perceived utility were higher for these applications than for the applications of biotechnology in the area of food and agriculture.

As demonstrated in Table 7 below, an analysis6 of subgroup differences established that 'technophiles' were significantly more likely to perceive a number of applications as useful. In addition, males were significantly more likely to see use of gene technology to produce medicines as useful.

Table 7. Subgroup differences in perceived usefulness of applications

Perceived usefulness Item Subgroup % Total for item %


GM food crops 92 83GM non-food crops

83 70

Human transplants

99 91

Medicines 100 96Males Medicines 99 96



Figure 8. Perceived risk of general applications


There are fairly high levels of perceived risk for all applications of biotechnology together with high levels of perceived utility. The proportion of participants rating applications as 'risky' ranged from 37%, for the use of stem cells to conduct medical research and treat disease, to 54%, for modifying the genes of plants to produce food. Perceived risk for using gene technology to produce medicines and for using gene technology in human transplants were in the middle of the range (44% and 47% respectively).

A summary of the demographic and psychographic differences77 in perceived risk is presented in Table 8. In sum, the only significant differences to emerge were that those who disagreed that 'new technologies excite me more than concern me' were more likely to perceive the use of stem cells and the use of gene technology in the production of medicines to be risky.

Table 8. Subgroup differences in perceived risk of applications

Risks Item Subgroup % Total for item %

Technophobes (disagree that new technologies excite me more than they concern me)

Medicines 59 44Stem cells 49 37



Figure 9. Perceived acceptability of general applications


Results for perceived acceptability of applications follow a similar pattern to those for perceived utility, with health and medical applications receiving more positive ratings than food and agriculture applications. The application seen to be acceptable by the largest proportion of participants was using stem cells to conduct medical research and treat disease.

As indicated in Table 9 below, the only significant predictor8 of perceived acceptance of technologies was attitude towards new technologies. 'Technophiles' were significantly more accepting of all applications.

Table 9. Subgroup differences in perceived acceptability of applications

Acceptance Item Subgroup % Total for item %


GM food crops 84 73GM non-food crops 91 73Biotechnology in the production of food from plants

89 76

Medicines 94 89Stem cells 98 92Human transplants 93 84



Qualitative findings

Group discussions shed some light on why, in general, health and medical applications of biotechnology attracted more support than biotechnology in food and agriculture. Some of the major factors contributing to these positive perceptions include the following:

Perceived purpose: Health and medical applications were generally seen to have humanitarian and noble objectives. In general there was greater understanding of the potential benefits of gene technology in medicine.

Risks versus benefit: Many participants had come to realise the significant potential benefits for human health in the development of medical treatments making use of gene technology. This was particularly the case following heavy media coverage of the parliamentary debate on the use of embryonic stem cells. Risks on the other hand were seen to be fairly low, due to the perceived level of control that can be exercised (discussed below).

Perceived level of control: Medical technology is usually confined to the laboratory until the time that it is certified as safe for use in treating patients. In addition, medicines and medical treatments are applied to individual patients (who have a medical condition requiring treatment) rather than across the population. For these reasons, it was felt that a satisfactory level of control can be exercised over any potentially adverse consequences of the technology.

Strict regulation: Regulation of medical research and medicines was perceived to be very strict, especially when compared with other sectors. Most people would therefore trust a medical treatment that has been certified safe by a government body, regardless of the actual technology in question.

Of the three areas of application with a medical focus about which group participants were asked, stem cells were seen as the most acceptable (as well as being the most familiar to many participants), followed by gene technology in medicines, and then gene technology in human transplants. As with the survey sample, all three areas of applications were considered to be more valuable than agricultural applications - with benefits to human health regarded as far more important than the commercial or economic benefits that participants believed agricultural applications would deliver.

The following quotes are typical of focus group feedback on medical applications of biotechnology:

I think personally having seen people going through illnesses, that's had an effect on me to be more to be more open to it.so you'd do anything to [help them], because it's such a great thing.

In medical research they generally have much higher ethical standards and more rigorous review of the work that goes on by your peers before that work is accepted. Whereas with the other ones where they're modifying plants, that's a lot more about making money than it is about helping people. They're going to push the boundaries of what's acceptable and what's not. And people are less emotive about what's happening to a wheat plant that they are about their own liver.

Awareness and perceptions of using stem cellsThis section presents the detailed findings for perceptions of the use of stem cells to conduct research and to treat disease. Participants were asked their opinions on the general application, as well as specific examples of the application; use of stem cells

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cloned from the patient's own cells, use of embryonic stem cells and use of non-embryonic stem cells. Figures 10 to 13 show the results over time for awareness, perceived usefulness, perceived risk and perceived acceptability of all stem cell applications. This is followed by a discussion of the qualitative feedback regarding the use of stem cells.

Awareness

Figure 10. Awareness of the use of stem cells.

Base: rotated questions CATI* 2005 Using stem cells to conduct medical research** 2005 ... with non-embryonic stem cells

Awareness of stem cells is high, with 95% of participants indicating awareness of the general applications. Awareness levels dropped, however, after participants were presented with details regarding the specific techniques involved in the use of stem cells. Results were 87%, 76% and 69% for awareness of the use of embryonic, cloned and non-embryonic stem cells respectively.

Compared to 2005, awareness of the use of both embryonic and non-embryonic stem cells has increased significantly, with a particularly large rise for non-embryonic stem cells. There has been no significant increase in awareness of the general application, the likely result of a ceiling effect.

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Perceived usefulness

Figure 11. Perceived usefulness of the use of stem cells

Base: rotated questions CATI* 2005 Using stem cells to conduct medical research** 2005 ... with non-embryonic stem cells

Levels of perceived utility are very high for all applications of the use of stem cells, in particular for the general application (96%) and for the application involving the use of stem cells cloned from the patient's own cells (95%). The use of non-embryonic stem cells is perceived to be more useful than the use of embryonic stem cells, at 86% and 81% respectively.

Perceived utility has increased significantly over the past two years for the general application of the use of stem cells, as well as for application involving the use of non-embryonic stem cells.

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Perceived risk

Figure 12. Perceived risk of the use of stem cells

Base: rotated questions CATI* 2005 Using stem cells to conduct medical research** 2005 with non-embryonic stem cells

Levels of perceived risk remained consistent with results from last wave and fairly consistent across applications. This wave's results ranged from 34% who perceived the use of cloned stem cells to be risky, to 40% who perceived the use of embryonic stem cells to be risky.

One area of change from last wave was a shift in the proportion of participants who were unsure of their perceptions towards those who felt that the applications were not risky. This applies to attitudes towards the use of embryonic and non-embryonic stem cells.

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Perceived acceptability

Figure 13. Perceived acceptability of the use of stem cells

Base: rotated questions CATI* 2005 Using stem cells to conduct medical research** 2005... with non-embryonic stem cells

Perceived acceptability of applications of stem cells followed a similar trend to perceived utility, with acceptability highest for the general application (92%) and the application involving the use of stem cells cloned from the patient's own cells (91%), and lowest for the application involving the use of embryonic stem cells (76%).

Compared to 2005, perceived acceptability of all applications has significantly increased since 2005.


Reflecting very high rates of acceptability among the survey sample, group discussions were very positive about the use of stem cells to conduct medical research and treat disease. Many people mentioned the recent debate in parliament and in the media as helping them understand the potential benefits of stem cell technology, with a considerable number saying that the prospect of significant medical breakthroughs was enough to change their minds on the issue.

A lot of that came out in the discussion in parliament, in the debate in parliament, which was probably a really good process because finally we got some good media coverage. Good in the sense that it explained everything.

While most participants accepted the use of stem cells to conduct research and treat disease, it is was also commonly felt that strict regulations need to be in place to determine the kinds of uses to which stem cells can be put (and what kinds of stem cells can be used). Many people appeared to be satisfied with the way recent legislation on the issue had defined these limits.

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If there were certain rules about which foetuses and how they were to be used and harvested, that would have influenced my decision. If there were quite clear boundaries.

I think that we have the structures and checking mechanisms in place that all of this would be done in an ethical and thought out way.

Many group participants expressed concerns about the role that religious beliefs had played in parliamentary deliberations on the stem cell issue. These people argued strongly that regulations about medical research and treatments should be developed on the basis of expert scientific advice and with the potential risks and benefits in mind, and should not be influenced by the religious beliefs of key individuals involved in the decision-making process.

Awareness and perceptions of using gene technology to produce medicinesParticipants were asked their opinions about the use of gene technology to produce medicine. Once again 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, bacteria and plants

The findings are shown in the charts below

Awareness

Figure 14. Awareness of using gene technology to produce medicines


Awareness of the general application was fairly high, at seven in ten (70%). Awareness levels dropped markedly, however, when participants were presented with the details of

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the technique involved. Awareness was particularly low for the application involving the introduction of genes from humans into plants (17%).

There has been a substantial rise in awareness of the general application since last wave, up from 38% to 70%. Awareness of the production of medicines by introducing genes from humans into bacteria has also increased significantly since last wave, up from 25% to 38%.


Figure 15. Perceived usefulness of using gene technology to produce medicines


Almost all participants (96%) perceived using gene technology to produce medicines to be useful. This represents a substantial increase in positive perceptions since 2005, up from 73%. Significant increases were also found for the application involving the introduction of genes from humans into bacteria (up from 49% to 65%), as well as the introduction of genes from humans into animals (up from 38% to 51%). As found last wave, perceived utility levels declined somewhat when participants were presented with specific details of the technique involved.

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Perceived risk

Figure 16. Perceived risk of using gene technology to produce medicines


Almost one in two (44%) participants felt that using gene technology to produce medicines was risky. This proportion increased notably after participants had been prompted with specific applications, ranging from 51% for introducing genes from humans into plants through to 71% for introducing genes from humans into animals.

Compared to last wave, there was a significant decline in perceived risk for the main application of producing medicines through the use of gene technology (down from 53% to 44%), but no significant movements for the applications involving more details of the technique.

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Figure 17. Perceived acceptability of the use of gene technology to produce medicines


There has been a significant shift in acceptability of all applications of medicine production since 2005. This is particularly evident for the general application which was this wave perceived to be acceptable by almost nine in ten participants (89%), a rise of 24%.

Perceived acceptability followed a similar trend to perceived utility, with less positive perceptions indicated after participants were presented with specific details about the technique. Perceptions were least positive for the application involving the introduction of genes from humans into animals.


Understanding of the use of gene technology in producing medicines was variable in the group discussions. There was confusion about how exactly genes might be 'used' to make medicine, with only some people understanding that medicines could complement or counteract the expression of genes.

As with stem cells, and despite some misunderstanding about the techniques in question, attitudes towards this area of biotechnology were extremely positive, including among people who were said to be sceptical in the past. The amount of positive media coverage of gene-based medicines and the evident benefits for human health were seen as major reasons to support the development of medicines through gene technology.

I think people were just scared because nobody knew anything about it and now people can see what they're doing, and they are doing such wonderful things with people with diseases, so why wouldn't you just say, "Okay, congratulations!"

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Producing medicines through gene technology was regarded especially favourably by some participants because it was seen as less interventionist than other techniques. In other words, because people regard this application (correctly or otherwise) as not involving the direct manipulation of genes, it is regarded as more acceptable than (for instance) therapeutic cloning or the use of stem cells.

Awareness and perceptions of using gene technology in human transplantsSurvey participants were asked for their views on the use of gene technology in human transplants. Once again they were asked about their awareness, perceived usefulness, perceived risk and acceptability of using gene technology in this context.

Awareness

Figure 18. Awareness of the use of gene technology in human transplants

Base: rotated questions CATI* 2005 ... by transplanting the body parts of animals into humans** 2005 ... by transplanting human body grown in animals into humans

In contrast with results for the use of gene technology to produce medicines, awareness levels were higher when participants were prompted with details about the technique involved in using gene technology in human transplants. Just under seven in ten (68%) participants indicated that they were aware of the general application, while 75% indicated awareness for transplanting human tissue or organs grown in animals into humans, and 82% indicated awareness for transplanting animal tissue or organs into humans.

There was a significant increase in awareness since last wave for the general application (up from 45% to 68%), but no change in awareness levels for the two specific applications.

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Figure 19. Perceived usefulness of using gene technology in human transplants

Base: rotated questions CATI* 2005 ... by transplanting the body parts of animals into humans** 2005 ... by transplanting human body grown in animals into humans

More than nine in ten (91%) participants indicated that using gene technology in human transplants is useful, representing a significant increase in positive perceptions since 2005 (up from 77%). A significant increase in positive perceptions was also found for the application involving transplanting animal tissue or organs into humans.

As found with perceptions of the use of gene technology to produce medicines, perceived utility declined after participants were presented with details about the technique involved. In this instance, perceived utility dropped back to 72% for transplanting animal tissue or organs into humans and to 70% for transplanting human tissue or organs grown in animals into humans.

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Perceived risk

Figure 20. Perceived risk of using gene technology in human transplants

Base: rotated questions CATI* 2005 ... by transplanting the body parts of animals into humans** 2005 ... by transplanting human body parts grown in animals into humans

Just less than one in two (47%) participants indicated that using gene technology in human transplants was 'risky', a significant decline in perceptions of risk compared to last wave (down from 56%). In line with findings for other applications in the health and medical field, participants were more likely to view applications as risky when presented with detail about the technique. There was no change since 2005 to perceptions of risk for these applications.

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Figure 21. Perceived acceptability of using gene technology in human transplants

Base: rotated questions CATI* 2005 . by transplanting the body parts of animals into humans** 2005 . by transplanting human body parts grown in animals into humans

Results for perceived acceptability follow a very similar trend to results for perceived usefulness, with significant increases in positive perceptions for the main application (up from 65% to 84%) and for the application involving transplanting animal tissue or organs into humans (up from 49% to 58%), and more positive perceptions for the main application than for specific applications.


The use of gene technology in human transplants was regarded favourably in most group discussions, with some referring to the shortage of human organs for transplant as a compelling reason to pursue this area of biotechnology. Little or no differentiation was made between the various techniques involved (e.g. animal tissue versus human tissue grown in animals), although these issues were not explored in detail.

A minority of participants regarded the use of gene technology in human transplants as 'unnatural' or overly interventionist. However, these people tended to have a poor understanding of the techniques in question or the broader scientific issues.

We don't know necessarily what we're going to be getting. There could be generations of trials that need to go into something like this. It could interrupt human development and either bring out the super race or stunt human development along the way. It's quite dangerous.

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Response to media stories relating to the role of genes in human behaviourGroup participants were asked about their impressions of the media's representation of the role of genes in human behaviour, with a focus on six specific areas:

Behavioural problems

Obesity

Panic attacks

Reading skills

Alcohol craving

Violence.

After discussing their general views on these issues and how they are portrayed by the media, participants were asked to read one of six newspaper articles (one on each of the above topics) and to provide verbal and written feedback. The articles were deliberately chosen so as to be representative of tabloid-style reporting in this area.9

General attitudes towards the role of genes in determining behaviour

When asked for their general opinions on the role of genes in determining behaviour, group participants often made reference to the 'nature versus nurture' debate. There was some awareness of the way that genetic and environmental factors interact, and are not simply competing forces:

Some people have the ability and are in the wrong environment and can't reach their full potential. So I think the ability may be genetic ... and the right environment can enhance that ability.

I think that your genes are a foundation but there are so many other factors in your life that may trigger these things or may suppress them. So you may have an addictive gene in your body, but if your surroundings don't really trigger that, like your parents don't smoke and they don't drink, then I think that that's just set off.

A fair number of participants expressed concerns that talk of genetic predisposition might give people an excuse for their socially undesirable behaviour:

You can't say it's okay because your genes say you're going to be fat.

The gene, I don't think it can cause people to do anything, it's learned behaviour, how they're brought up and their parents' personalities ... it makes me angry in court cases where they're [blaming genes].

You think you've got a genetic mutation that allows you to be more prone to being obese ... I think a lot of people perhaps say it's just genetics. But it's because of the environment they've been brought up in . I believe there might be a genetic mutation that may allow people to [become obese] but the environment plays a new part in it, and people need to take more responsibility for diet and exercise.

9 The six newspaper articles are reproduced in Appendix A.31


A minority of people took positions at either extreme of the debate, arguing that human behaviour is totally determined either by genes or by environmental factors (with the latter category often seen to include a notion of free choice). For some, there was a perception that "you can have control over your genes," and that environmental factors like diet, or your mother's behaviour during pregnancy, can somehow influence one's genetic makeup.

Media portrayal of the role of genes in determining behaviour

ADD/ADHD was the most quickly and most consistently mentioned issue when the participants were asked about stories in the media relating to genes and behaviour. Sexual orientation, addiction, depression and obesity were also mentioned.

Some participants cited media articles with unusual conclusions:

One thing I definitely recall about genetic propensity for violence; they were saying that left-handed people were more likely to commit murder.

I heard on the Radio on 2UE, they were discussing rage, like with Martin Bryant and his inherent condition, and if with assessment and stuff they could cut out a lot of these people with these tendencies before they perpetrated a crime.

There was a perception that tabloid newspapers, and commercial television and radio current affairs programs, are not credible sources of information, and are prone to sensationalism. However, participants also readily acknowledged they generally read newspaper articles casually and largely uncritically (as opposed to their careful consideration of the issues in a focus group environment). Nevertheless, there appeared to be a degree of scepticism about the validity of the results of scientific studies reported by the media and the extent to which science can legitimately separate genetic from environmental factors in such studies.

Reactions to the stimulus material

After reading the stimulus materials (that is, the six newspaper articles reproduced at Appendix A), most people were critical of the way these issues were reported. The Herald Sun article (article 1) was considered sensationalist by most when during discussions (although the written feedback of some participants suggests that these people initially had a less critical interpretation).

Just a story to excite the public and sell papers. No scientific evidence. You can make up a story to prove anything is down to genes. Nature vs. nurture. Both play a part but in this case [there is] so little evidence.

Articles 1, 5 and 6 all prompted scepticism about the methodology of the scientific studies being reported; this may be because some participants found the conclusions (i.e. that genes are an important determinant of behaviour) difficult to accept.

For some, upon discovering that the research was from a source they regarded as credible, participants found the conclusions of the article to be credible. Many participants acknowledged that the articles that went into the most scientific detail (articles 5 and 6) were difficult to understand. This led them to conclude that the relationship between genetics and behaviour is complex - with some concerns that this complexity was not reflected in the headlines:

My point is you've got some relatively sensational headlines there, and the rest of the story is ambiguous, and you can draw any conclusions you want.

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The general view was that newspaper articles tend to begin with sensationalist headlines, but then provide more detailed discussion later in the piece.

Article 2, from The Adelaide Advertiser, briefly outlines some research suggesting a genetic mutation that might predispose people to eat more, and discusses the possible shortcomings of the research. Although there was some appreciation of the way in which the article presents both sides of the debate, participants generally stressed the importance of diet and exercise (rather than genetics) in contributing to obesity. Many cited the figure given in the article -that the genetic mutation was "responsible for 6 per cent of all cases of severe early-onset obesity" - as evidence against the headline: "Don't feel guilty, it's in the genes".

Article 4, from The Age, discusses how the best method for teaching children to read might be genetically predetermined. This article was considered credible and easy to understand.

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4. ConclusionsThis section presents the conclusions of the research

Overall support for the use of biotechnology in health and medicine has increased significantly since 2005. Support remains more positive, on balance, than for food and agriculture Applications. Support has also increased for a range of health and medical applications including the use of stem cells, using gene technology to produce medicines and using gene technology in human transplants. Importantly, the ultimate objective of each application is much more relevant to public perceptions than the exact techniques in question. For the majority, these objectives are perceived as humanitarian and 'noble' in nature. Other factors contributing to public support for health and medical applications include the perception of low risk of potential negative consequences due to laboratory containment of technologies at the experimental stage, and the perception of strict regulation of medical research and medicines and of high compliance with these regulations.

There were strong opinions expressed by some that regulations about medical research and treatments should be developed on the basis of expert scientific advice alone, rather than being influenced by the moral beliefs of those involved in the decision-making process.

Stem cell research is even more widely supported today than in 2005. Qualitative research suggests that this increased support is due to the heavy media coverage of the recent parliamentary debate, and a corresponding increase in community understanding of the potential benefits of this technology. There do, however, remain some concerns regarding the source of the stem cells.

There is strong support for the use of gene technology in producing medicines, including among people who were said to be sceptical in the past. The amount of positive media coverage of gene-based medicines and the evident benefits for human health were seen as major reasons to support the development of medicines through gene technology. Understanding of how this is done, however, is fairly poor.

The use of gene technology in human transplants was regarded favourably by most focus group participants, with some referring to the shortage of human organs for transplant as a compelling reason to pursue this area of biotechnology. Little or no differentiation was made between the various techniques involved (e.g. animal tissue versus human tissue grown in animals), although these issues were not explored in detail.

Broadly speaking, it appears that people have become more familiar with biotechnology and gene technology over the last two years.

Qualitative results suggest that the recent public debate on stem cells has had a positive influence on awareness and understanding of such issues. For the most part, it seems to have demonstrated to the community that policy and regulation is soundly based and the result of informed debate, in which all relevant considerations have been addressed by experts.

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Appendix A - Exploratory Group Notepad ExerciseParticipants were presented with one of the following media exercises and were asked to write a response to the question 'How would you describe this article?' This notepad exercise was followed by a discussion of participants' responses.

1. Your kids are ratbags? Them's fightin' genes8 February 2007

Herald Sun

Fighting between parents is not to blame for "ratbag" behaviour in children, according to new Australian research that says it's all in the genes.

Scientists have discredited the well-worn theory that rows in the home can be responsible for bullying, shoplifting, vandalism and other conduct problems among kids.

Instead it seems the link is more direct - parents who argue a lot pass their genes for disruptive behaviour on to their children, who develop a juvenile version of the same traits.

The findings, from a study of more than 1000 Australian twins, could prompt a shift in the way delinquency is treated in therapy.

"Our data shows that marital conflict is not a major culprit," said epidemiologist Nick Martin, from the Queensland Institute of Medical Research.

"Rows have often been blamed for ratbag behaviour but we've got no evidence to suggest that they are the problem."

Researchers, including some from the US, studied 1045 pairs of twins and their children to see if the link between parental fighting and kids' conduct problems was genetic or environmental. They found children of an identical twin had the same levels of behavioural problems regardless of whether it was their parent or their parent's identical sibling that had marital rows.

Children whose own parents don't fight, but the genetically-identical aunt or uncle does, had the same level of delinquency as children living in the opposite situation, the researchers found.

Prof Martin said this was because this child could pick up the "disruptive" traits from the identical aunt or uncle, proving the link was genetic.

2. Don't feel guilty 'it's in the genes'5 September 2006

The Advertiser

Big boned people shouldn't feel guilty about their weight because their genes are to blame, an international congress has been told.

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But the comments sparked debate, with a leading Australian scientist saying people should take more personal responsibility for their diets to end the obesity epidemic.

Dr Sadaf Farooqi, of the University of Cambridge, said people with the genetic mutation -responsible for 6 per cent of all cases of severe early-onset obesity - felt hungrier and could appear tall, strong or "big boned". She said they were predisposed to eat more.

But Emma Whitelaw, from the Queensland Institute of Medical Research, said genetic predisposition let obese people off the hook for not looking after their diet.

3. 'Gene for panic attacks'Anxiety may be genetic10

A gene may be partly responsible for causing psychological disorders such as panic attacks, say researchers.

A team from Ohio State University has found that people with a particular variation in the serotonin transporter gene (5-HTT) showed a greater fear response during a laboratory experiment.

Lead researcher Professor Norman Schmidt said: "While a single gene cannot be held accountable for complex emotional states - such as anxiety disorders - we're beginning to pinpoint which genetic traits may make a person susceptible to developing psychological disorders."

The 5-HTT gene is responsible for regulating the chemical serotonin, which helps transmit messages in the brain.

The people who showed a greater fear response during an experiment had a variation in the gene that caused the brain to take up serotonin faster, leaving less available.

A lack of serotonin is thought to be linked to the development of psychological disorders.

In the study, 72 participants took two breaths of pressurised air through a mouthpiece.

The breaths were spaced 10 minutes apart. One breath consisted of pressurised room air, and the other was a carbon dioxide-oxygen mix designed to make subjects feel they are momentarily short of breath.

This can produce symptoms of anxiety in some people.

Subjects with the "long" form of the 5-HTT gene - the one implicated in the increased regulation of serotonin - reported feeling more anxiety when they took the carbon dioxide breath.

Dr Schmidt said. "It's clear that a single gene is rarely the culprit - there are multiple genes that are involved in most types of psychological disorders.

"But I think that the combination of genetic traits and psychological traits may ultimately be the best way to predict psychological disorders."

John Fraise, a chartered clinical psychologist at the Adult Psychological Therapy Service in Wakefield, said the research was interesting, but would not, in the short-term, make any difference to the practicalities of managing anxiety disorders.10 http://news.bbc.co.uk/2/hi/health/790561.stm Accessed 21st June, 2007

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http://news.bbc.co.uk/2/hi/health/790561.stm


He said: "My hands on experience of dealing with individuals for many years has led me to believe that some people may be more pre-disposed to stress than others.

"But I would suggest that many factors play a part.

"The presence or absence of a piece of genetic code will not necessarily determine how somebody reacts to stress.

"Some people may have developed skills to enable them to manage anxiety sufficiently well that they never manifest the problem even though the pre-disposition is there."

The study appears in the new issue of the Journal of Abnormal Psychology.

4. Reading skills are in the genes, study shows21 September 2006

The Age

Genes are credited for many personal traits, ranging from height and weight to poor eyesight. Now, it seems, reading skills can be added to the list.

A study of twins has found different genes influence whether a child can learn to read by phonics - the sounding out of words - or by recognising words visually.

"This study gives valuable insights into these two reading processes that policymakers might like to use in developing policy about how reading is taught to children," said researcher Anne Castles, from the University of Melbourne.

The study tested the reading and spelling ability of about 600 pairs of identical and non-identical twins, aged from 12 to 18. If reading skills had a genetic basis, identical twins, who share all their genes, would be more similar in their abilities than non-identical twins, who share about half their genes.

The researchers used made-up words to test the youths' sounding-out technique. Words that could not be read or spelt by phonics, such as "yacht", were used to measure their ability with the whole-word recognition approach.

"What we found was that both of these reading skills have a genetic basis . . . and different sets of genes seemed to be involved in acquiring the two different skills," Associate Professor Castles said.

The three-year study also showed reading and spelling involved the same sets of genes. "People often say 'I'm fine at reading, but I'm hopeless at spelling'," she said. "(But) in terms of what your inherited characteristics bring you, it seems to be essentially the same skill."

Associate Professor Castles said the results showed it was important to teach and test children using both the phonics and whole-word approach, to ensure that any problems were detected and treated early. "Just because something is genetically based . . . it's not some kind of sentence for life. It just means that a child might need help in a particular area."

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5. Gene mutation may raise the risk of alcoholism10 January 200711

Reuters: http://today.reuters.com/news/articlenews.aspx?type=&storyid=2007-01-10T142530Z_01_TON014235_RTRUKOC_0_US-GENE-ALCOHOLISM.xml&src=nl_ushealth1100

Researchers have identified a gene variation that seems to influence a person's craving for alcohol; a finding they believe could have important implications for identifying at-risk drinkers as well as for selecting the best treatment for a patient's dependence.

The gene mutation involves a cell structure called the mu-opioid receptor. In previous studies, this receptor has been shown to bind beta-endorphin, a pain-relieving chemical the body releases in response to alcohol intake and other stimuli.

Further research has shown that when the gene variant, or the "G allele," is present, the receptor binds to beta-endorphin more strongly than when the more common "A allele" is present.

Dr Esther van den Wildenberg, from the University of Maastricht in the Netherlands, and colleagues investigated the impact of the A and G alleles on alcohol craving.

The study included 84 men who carried only the A allele and 24 who carried at least one copy of the G allele. Family histories of alcoholism were comparable in each group. G allele carriers showed significantly more craving than did subjects with only the A allele.

In addition, the authors found that G allele carriers were more likely to also report illicit drug use at some point in their lives.

6. Violence GeneWe all get angry sometimes. But some people turn that anger into violence... and scientists are discovering that may be partly due to genetics. This ScienCentral News video explains.

Genetically Wired Brains

With swelling prison populations, researchers are trying to understand the biology behind aggressive behavior. National Institute of Mental Health scientist Andreas Meyer-Lindenberg is looking for clues to how genes wire our brains early in life.

He's focusing on a specific gene that was previously linked to impulsive violence in certain populations of people. A study in 2002 found that subjects with a particular form of a gene had a significantly higher risk of violence only if they were abused as children. While this gene-environment interaction is important in understanding this behavior, Meyer-Lindenberg wanted to focus on the genetic facets of violence.

The study also found that a variation in this gene, called the L version of MAO-A, disproportionately affects men, because this gene is located on the X chromosome, which determines sex. Since men only have one X chromosome, they are more prone to the

11 Reuters: http://today.reuters.com/news/articlenews.aspx?type=&storyid=2007-01-10T142530Z_01_TON014235_RTRUKOC_0_US-GENE-ALCOHOLISM.xml&src=nl_ushealth1100 . Accessed 21st June, 2007

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http://today.reuters.com/news/articlenews.aspx?type=&storyid=2007-01-10T142530Z_01_TON014235_RTRUKOC_0_US-GENE-ALCOHOLISM.xml&src=nl_ushealth1100







effects of the gene. Women have two X chromosomes, but the chances of having the gene variation on both chromosomes is very rare.

"One of the most fascinating things," Meyer-Lindenberg says, about this field of science called psychiatric genetics, "is how it is possible that genes [can] encode for molecules that affect something as complex as behavior, even psychiatric illness such as depression and social behavior."

Genes direct the production of proteins, which are the building blocks of living systems. Meyer-Lindenberg is investigating a gene that directs the creation of a special type of protein, an enzyme, that breaks down a chemical in the brain called serotonin.

Serotonin is a chemical messenger in the brain that affects how brain cells communicate with each another. Meyer-Lindenberg says that different forms of the gene can affect the brain's wiring and, "will then presumably contribute to behaviors and emotions such as fear or aggression."

To isolate how this gene variation might affect the brain, Meyer-Lindenberg took MRI brain scans of more than 100 healthy volunteers. Since this genetic variation is common in our population, some of the volunteers had this genetic variation, and some didn't.

He showed them pictures of angry and fearful faces, and other disturbing images, like those of an angry dog or of a gun pointed towards the screen.

As he wrote in Proceedings of the National Academy of Sciences those with the aggression-related form of the gene responded to the pictures with increased activity in the amygdala — the brain area that detects danger, but less activity in the cingulate cortex — the brain region which controls aggression.

These brain patterns have been linked to impulsive violence, but Meyer-Lindenberg cautions in his paper, "...because our sample was psychiatrically normal, the variation observed is clearly compatible with normal mental health and does not imply or suggest increased risk for violence in our sample."

There are many possible factors at work, he says, and violence is an extremely complex behavior. "Whether or not any given person in any given situation will become violent is known to be almost impossible to predict," he explains.

So while this gene may contribute to aggressive behavior, that doesn't mean we're chained to our genetic makeup.

Meyer-Lindenberg's research was published in the online edition of the Proceedings of the National Academy of Sciences on March 28, 2006 and was funded by the National Institutes of Health.

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community attitudes to biotechnology report on health web viewthe nature of community attitudes. ......

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