Engaging with the public was a key part of our project in order to ensure that the results of the project were of benefit and acceptable to all. In order to do this we carried out surveys with members of the public at strategic points to guide the project in the best direction.
We carried out our first survey before Christmas to investigate the issues people would like to be addressed by an interdisciplinary science project. When combined with our teams skills this guided the overall direction of our project down the iGEM therapeutic track.
Do you think that synthetic biology can contribute towards the solution of serious global challenges?
All of our respondents thought that synthetic biology could contribute to serious global challenges which reassured us that the outcome of our synthetic biology project would be useful, and that this is an area of science that the public have faith in.
What area would you like a project of this sort to focus on?
We found that the majority of people questioned favoured medical treatments as their preferred area of research. This question was a free answer although the question prompted some answers: "For example: diagnostics, energy, environment, food and nutrition, information processing, manufacturing, therapeutics etc." This may have had an impact on what people chose, but out of the different iGEM tracks available medical and therapeutic purposes were the most preferred.
What specific problem would you like to have solved by an interdisciplinary, synthetic biology-based project?
This was a unprompted, free answer question and gave us answers such as Malaria, treatment of the common cold and asthma treatment. Many were quite vague and not feasible for us to solve in one summer, but one person suggested probiotic supplements which got us interested in using probiotics as a treatment for diseases in general.
This survey was designed to give us some idea as to the direction our project should take. Based on this we decided to investigate the use of bacteria as a medical treatment.
In this survey we aimed to investigate the public’s awareness of scientific issues that arise from our project to establish the areas we need to focus on in our outreach activities, assess the level of support our project might have if it were to be used as a treatment in the future and to get an initial idea of whether people would prefer a single or repetaed treatment plan which effected the designs of our genetic circuit.
How old are you?
We found that we had an uneven spread of age groups among our respondents with a heavy bias towards under 21s. This is probably because the survey was shared via Facebook which has a lot of younger users, and shared particularly among our friends who we requested fill it in. In addition a lot of our friends aged under 21 are doing biology-related degrees at university so their knowledge may not be representative of their age group as a whole. We decided to split the results into under 21 and over 21 as the older groups were so sparsely populated there was little advantage in distinguishing between them.
Had you heard of genetic engineering before this survey?
We found that 90% people surveyed have heard of genetic engineering before this survey and we concluded that informing about genetic engineering shouldn't be our priority in our outreach activities.
Had you heard of synthetic biology before this questionnaire?
Only a small majority overall have heard of synthetic biology so we concluded it would be worth performing some outreach projects to make people more aware of synthetic biology so they can be more informed and engaged in our project. A majority of older people had not heard of synthetic biology before so ideally it this is the age group where we would be focussing our efforts. We concluded that we should target our outreach to more established forms of communication such as radio rather than focusing on just social media which has a much younger demographic.
Have you heard of Orphan Diseases (e.g. Wilson’s Disease)?
Our results showed that Orphan diseases need greater awareness as most people haven’t heard of them. When awareness of rare disease is low amongst both the public and medical professionals, patients of these diseases are less likely to get a correct diagnosis. Public awareness also affects the research allocation to rare diseases which are often underfunded.
If your doctor recommended the use of genetically engineered bacteria to treat an illness, would you use it?
Already a majority of people said they would use a genetically engineered bacteria as a treatment and a third of people didn’t know. If they were given more information about the treatment they might be persuaded to accept it so we should aim to do inform about the nature of our bacteria as we work on our project. Is the decision to take a treatment largely due to a doctor's recommendation or are other people making the decision for themselves from their own knowledge of synthetic biology? We found that a larger proportion of younger people prepared to take a probiotic treatment and previously a greater number of these people had heard of genetic engineering, suggesting this decision is linked to knowledge levels. this does not however account for the fact that attitudes to medical advice varies between age groups.
If you were given the option between taking a daily pill for an extended period of time, or a single probiotic bacterial pill to treat an illness, which would you choose?
A single pill is preferable to a daily pill for the majority of respondents, however our results show that most people would follow their doctor’s recommendation. This suggests in previous question that many of the responses in favour of such a treatment are in large part guided by the doctor's recommendation. We could do another survey to clarify this by repeating the question without giving them the option of allowing a doctor to choose for them. This question highlights how important it is to inform doctors not just patients of our treatment as their input would be required to make our treatment widely acceptable. We decided that we should discuss our treatment with doctors to get their opinions and work out what we would have to do to convince them that our probiotic is safe.
In conclusion, the majority of people have heard of genetic engineering and synthetic biology. If we were to raise awareness of these issues then we should focus on older people rather than younger people, although there is benefit in talking to as many people as possible. Most people have not heard of orphan diseases so raising awareness of these should be a priority and we will try to do this. We found that people were wiling to follow what their doctors recommended so we should ensure that doctors are informed of our treatments, rather than just focusing on the view of patients. We should do another survey to clarify whether a single or daily dose is preferable, and maybe remove the reference to doctor's recommendation as this might be influencing people’s responses.
This survey was designed to investigate the ethical issues people might have with our project so we can respond to these and try and minimise these concerns through the design of project or generate counter arguments.
How old are you?
This time we had fewer responses than before and some groups have no people in them at all. Therefore we will split responses into under and over 21 like before. We think the reasons for this age spread are the same as those seen in survey 1 but older groups are even less represented in this survey because there are fewer responses overall.
Do you understand the term 'genetically-engineered bacteria'?
We covered this topic in the previous survey and received more responses in that. We will not analyse the data from this question therefore due to the smaller sample size.
If your doctor recommended the use of genetically-engineered bacteria to treat an illness, would you use it?
Again this question was better covered in the previous survey.
What do you think people's concerns are about the use of genetically-engineered bacteria (e.g., releasing genetically engineered bacteria into the environment, safety for the patient, "playing God", unjust or unnatural etc.)?
Issues related to safety (bottom four) were most important to people. We should combat this by focusing our research efforts on ways to stop our bacteria surviving outside the body and way to stop the treatment if it was having undesired affects. There were considered in our safety flowchart. Unknown long term effects are a concern to people so we should aim to minimise the use of risky techniques and educate people about the benefits this technology can provide in addition to allowing balanced discussion of the possible risks the technology could create. The same attitude applies for the concerns about God and unnatural methods. We should acknowledge that these are problems where people have legitimate fears and concerns and we should approach these concerns carefully and not dismiss them while bringing in a broader discussion on the potential benefits of synthetic biology.
The statements given as examples tended to be popular but we had no way of telling whether they would have been popular if unprompted – we should possibly have made this question a free, unprompted choice as we believe the question could still be understood without prompts. The number of responses for each point is dependent on how general the categories are, as we couldn't get the subtleties of individual answers onto a chart we had to group them together rather broadly to see which issues are the most pressing which involves making very subjective decisions in the interpretation of answers.
Why would you (or why do you think other people would) be against the use of these bacteria in a medical treatment?
Bacteria are perceived as pathogens so using them as a medical treatment seems counter-intuitive and people are not comfortable with willingly exposing themselves to bacteria. There is a sense that people are misinformed about GMOs and bacteria, so with more education both of these problems could be addressed. We will do this via our summer schools and social media presence. Unknown consequences and the lack of previous success are also issues. We could argue that we can only find the answers to these questions by investigating the treatment, or that the potential benefits of our project should outweigh the theoretical, unspecified disadvantages. There are still environmental and safety concerns, but the ethical and religious issues don’t seem to apply here, perhaps because this is specified as a medical treatment. If we think this is the case we should really emphasise the medical application of this technology, and specifically our project, if we want to ensure the widest support for what we’re doing.
This survey shows us that we need to consider safety – all aspects of safety including environmental, patient and mutation risk safety. This is addressed in our safety flow chart. Unknown consequences should be considered, and although there will always be the possibility of these occurring we can take steps to minimise them and emphasise how the benefits of the treatment should outweigh them if implemented carefully. This is the same for unnatural and religious based arguments, we should acknowledge that these are potential issues and address them. However these views were not as widely held as we expected. To get people to be in favour of using bacteria as a medical treatment we will have to work hard to convince people that bacteria can be safe and useful rather than just a pathogen.
This survey was designed to investigate the preferred delivery methods for our treatment and the dosage frequency people would tolerate. This information was used to decide how to deliver our probiotic and to clarify whether people would prefer a permanent population in the small intestine or more frequent applications. This survey was performed in collaboration with iGEM Vilnius so that we can compare the results between the two different countries and see how opinions differ internationally.
Are you a Wilson's Disease patient?
We added this question about Wilson’s disease after we made the survey but before posting it on the Wilson’s Disease Support group Facebook page. We will assume that the people who didn’t answer this question do not have Wilson’s disease as the chance of someone with Wilson’s disease finding the survey and filling it in are very small. 21 respondents had Wilson’s disease, 16 respondents definitely did not and 40 respondents answered before we added this question but we assume they did not have Wilson’s disease either, making 56 overall. Vilnius did not ask this as they are working on phenylketonuria rather than Wilson’s disease.
Have you ever taken a probiotic treatment and, if so, did it have any effect?
In the UK the proportion of people who hadn’t tried a probiotic treatment was greater than those who had; in Lithuania the opposite is true. We believe these sort of treatments are more common in Lithuania that in the UK. Although we explained what a probiotic is this lack of familiarity may have stopped UK respondents recognising that this applies to food products. Of those who had tried a probiotic treatment, in all the large groups, more people said that they had no effect on their health than a positive effect, suggesting many people would be sceptical of using probiotics as a medical treatment. If the project were to be taken forward we would want to peform marketing to improve the image of probiotics so people would be more willing to take them.
In general, how would you prefer to take a probiotic treatment?
Consumable products are less popular in all groups than pharmaceutical products which suggests this is how we should plan to deliver our treatment. This is convenient because we can’t make food in our lab, controlling the dose is easier and people won’t get bored of having to take a certain type of food repeatedly and decline to take it. Pharmaceutical products may be more trusted or deemed more appropriate for treating a serious condition. Higher proportion of people in Lithuania would take the consumable product than the UK which we think is due to these sorts of products being more widespread in Lithuania. We discussed this with the team in Vilnius.
Of the options listed below, which would be your preferred pharmaceutical delivery method?
The UK results show that a gel-like bead or a tablet/pill are the most popular options. We decided to research a gel-like bead as this builds on work done by previous Oxford iGEM teams. Results from both countries show tablet or pill is the most popular but these are also the most familiar. It’s likely that people did’t really know what a gel-like bead would be meaning that we should inform them of this when explaining our project.
Would you prefer to take a probiotic treatment regularly or a single treatment that creates a permanent population of bacteria in the gut (meaning that no further treatment would be required)?
The majority of people want a single treatment so if this were feasible we should try to develop this. This could reduce the problems with storing the pills or beads as they would only need to be taken once so would not need to be stored in the home. We would need to ensure however that our bacteria could compete and survive in the human intestine otherwise a single treatment would be ineffective. We would need a control mechanism to kill the bacteria once they are outside the body regardless of whether it is a single or a regular treatment.
Ideally, how often would you prefer to take a probiotic treatment? (Select all that apply.)
Overall slightly more people would prefer to take the pill once a day than once ever, but Wilson’s patients are more likely to want a pill once ever than once a day. As these are people who know what it’s like to take a pill every day and would benefit most from our treatment this is another reason to develop a more long lasting treatment. This complements a question in the second survey we performed, in which we found that the majority of people who expressed a preference would prefer to take a single pill than a pill once a day.
If this were not possible, how often would you be prepared to take a probiotic treatment? (Select all that apply.)
A daily pill appears to be acceptable to most people, so if we were unable to make a sustainable probiotic population, this would be an alternative we should investigate. People would be prepared to take it more than once a day if necessary so we if we found that the amount of bacteria we need to turnover is too high to take just once a day, our probiotic would still be acceptable if taken more frequently. Ideally we would like to create a population with some ability to persist so that our treatment is improved, at least in regards to dosage frequency, over the existing treatments for Wilson’s disease which have to be taken multiple times a day.
From this survey we have found that probiotic treatments are not widely taken in the UK but results from Lithuania suggest they may be more common in other countries. We might need to raise more awareness of them if we were to develop this into an actual product rather than a proof of concept. We should investigate a pharmaceutical delivery method rather than a consumable product delivery method. We decided to investigate delivery via a gel-like bead because this was one of the most popular options in the UK and it is feasible for us to achieve. A single treatment is more popular than a regular treatment. If we were to re-run this survey in the future we should prevent people from giving more than one answer as this makes the results very hard to interpret. If necessary people would be willing take a pill once a day, so if we find we couldn't make a population that persist in the small intestine, our probiotic may still have value.