Team:Oxford/Questionnaires
Introduction
Engaging with the public was a key part of our project in order to ensure that the our end product was something that would be of benefit and acceptable to the people who would need to use this. 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. Each survey had a different aim to ensure that we were not doing surveys unnecessarily and to direct the project once we got out the results.
First Survey
We carried out our first survey before Christmas to investigate the issues people would like to be addressed by an interdisciplinary science project so that we would know what area would be most beneficial for us to do our project in.
Do you think that synthetic biology can contribute towards the solution of serious global challenges?
100% of our respondents thought that synthetic biology could contribute to serious global challenges which reassured us that the outcome of our own synthetic biology project should 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 preferable.
What specific problem would you like to have solved by an interdisciplinary, synthetic biology-based project?
This again was a free answer question which was unprompted, and gave us answers such as Malaria, treatment of the common cold and asthma treatment. These were all quite vague and not really feasible for us to solve in one summer, but one person suggested probiotic supplements which got us thinking about bacteria as a treatment for diseases in general.
Results
This survey was designed as a brief guide 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.
Second Survey
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 get an initial idea of whether people would prefer a single treatment or daily pill.
How old are you?
We found that we had an uneven spread of age groups with a heavy bias towards under 21s among our respondents. this is probably because the survey was shared via Facebook which lots of younger users, particularly among our friends who we got to fill it in. Also a lot of our friends under 21 are those doing biology related degrees at university with us so they may not be representative of their age group as a whole, their knowledge levels may be higher about the relevant issues than other people of the same age. This difference in age may impact on results as different age groups learn different things at school according to age and people’s opinions on medical treatments may vary with age. We decided to split results into under 21 and over 21 as the older groups are much smaller so there is little point in distinguishing between them.
Had you heard of genetic engineering before this survey?
We found that 90% people have heard of genetic engineering so don’t need to focus too much on public awareness of this in our outreach activities. Awareness was greater among younger people than older people so if anything we should be focusing on people over 21 but 90% overall means we probably don’t need to do this.
Had you heard of synthetic biology before this questionnaire?
Only a small majority overall have heard of synthetic biology so it’s worth doing some outreach projects to make people more aware of synthetic biology so they can be more engaged in our project. Again a majority of older people have not heard of synthetic biology so ideally it this is where we would be focussing our efforts.
Have you heard of Orphan Diseases (e.g. Wilson’s Disease?)
Our results showed that Orphan diseases need greater awareness as they are underfunded and most people haven’t heard of them. This means patients are less likely to get a diagnosis if awareness low amongst doctors as well but survey doesn’t specifically say this – raising awareness would help this too.
If your doctor recommended the use of genetically engineered bacteria to treat an illness, would you use it?
Already a majority of people would use it and a third of people don’t know – if they were given more information about it they might be persuaded to take it so we should aim to do this as we work on our project. Is this due to the doctors recommending them or people themselves making the decision for them? Need to ensure doctors would be onside too – communication with doctors required? We found that a larger proportion of younger people prepared to take it and a greater number of these people had heard of genetic engineering suggesting this is linked to knowledge levels. This suggests that by raising awareness a greater number of people will be prepared to take our treatment.
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. Our results show that most people would follow their doctor’s recommendation – this suggests in previous question that many of the responses saying they would take it is down to the doctor suggesting it rather than it being their own choice. We could do another survey to clarify this without enabling them to get the doctor to choose for them, obviously they’d want to pick the recommended option but at this stage we want to know people’s preferences so we can target our project accordingly. This highlights how important it is to win over doctors not just patients as their input would be required to make our project work, so if we can we should discuss this with doctors to get their opinions and work out what we would have to do to convince them it is safe.
Results
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 should try to do this. People will follow what their doctors recommended so we should ensure that doctors will recommend our treatments, not just focus on patients. We should do another survey to clarify whether a single or daily dose is preferable, and maybe remove the doctor part as this might be changing people’s responses.
Third Survey
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 so will split other responses into under and over 21 like last time. We think the reasons for this age spread are the same as those seen in survey 1 but older groups are even smaller because there are fewer people over all.
Do you understand the term 'genetically-engineered bacteria'?
We covered this in the previous survey and got more responses so we can ignore the answers on this survey and use these instead.
If your doctor recommended the use of genetically-engineered bacteria to treat an illness, would you use it?
Again this question was covered in the previous so see results for that.
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) are important to people. We should combat this by finding ways to stop our bacteria surviving outside the body – being considered in safety flowchart. Unknown long term effects are a concern but we if we minimise the use of techniques that are risky and educate people about the benefits this technology can provide that should outweigh the possible risks the technology could create. This is the same for the God and unnatural arguments. We should acknowledge that these are problems but suggest that the benefits may outweigh the risks. The statements given as examples tend to be popular but no way of telling whether they would have been popular if unprompted – should have made it a freer choice. Number of responses for each point is dependent on how general the categories are too, I couldn't get the subtleties of individual answers onto a chart so have had to group them together to see which are the most pressing.
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 trying 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.
Results
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 also emphasise how the benefits will outweigh them. This is the same for unnatural and religious based arguments, we should acknowledge that these are potential issues but not get too worked up about them as these views are 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.
Fourth Survey
This survey was designed to Investigate the preferred delivery methods for our treatment and the dosage frequency people would tolerate which we will to use to plan how to deliver our pills, to clarify whether people would prefer a permanent colony in the small intestine or more frequent applications. This is a collaboration with iGEM Vilnius who are using the same survey so that we can compare the results between the two different countries and see how opinions differ internationally. We did not ask for people’s age in this survey unlike the first two as we weren’t sure this was actually useful and low response rates on the previous survey meant we had to group the ages together anyway to get useful data.
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 which. 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 they had no effect on their health than a positive effect, suggesting many people would be sceptical of using this as a medical treatment. If the project were to be taken forward we would want to do some 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 better for us because we can’t make food in the lab, controlling the dose is easier and people won’t get bored of taking a certain type of food and forget 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 in Lithuania than the UK which we think is due to these sorts of products being more widespread in Lithuania having 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 so we have decided to go for 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 don’t really know what a gel-like bead is, and seeing as we would only be aiming at the UK market initially we will go with what is popular in the UK and more realistic for us to be able to produce which is the gel-like beads.
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 is feasible we should try to do 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 that our bacteria could compete and survive in the stomach otherwise a single treatment would be useless, and we would still need a control mechanism to kill the bacteria once they are outside the stomach 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 and as these are people who know what it’s like to take a pill ever day and would benefit from our treatment this is another reason for trying to take a more long lasting treatment. This corresponds to the second survey we did where we found that the majority of people who expressed a preference would prefer to take a single pill than a pill a day.
If this were not possible, how often would you be prepared to take a probiotic treatment? (Select all that apply.)
Once a day appears to be acceptable to most people so if we are unable to make a sustainable population this would be an alternative that people are still prepared to take. People would be prepared to take it more than once a day if necessary so we could also do this if we find that the amount of bacteria we need to turnover is too high to take just once a day but people also supported all the more long term options so ideally we would like to create a population with some ability to persist. We need some degree of persistence otherwise our treatment has no benefit, at least in terms of dosage frequency, over the existing treatments for Wilson’s disease which have to be taken multiple times a day.
Results
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 make this into an actual product rather than a proof of concept. We should make a pharmaceutical method rather than a consumable product, and it should be either a gel-like bead because this was one of the joint 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 take a pill once a day, so if we find we can’t make a population that persist in the small intestine we’ll go with this instead.
