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SURVEY
Attributions: Alexa Garcia (Descriptions), Jiaqi Xie (Data Analysis)


Does Personal Experience with Alzheimer's Disease Affect Willingness to Accept Treatment?
Our hypothesis is that people with personal experience with Alzheimer's Disease are more willing to undergo experimental treatments that people who do not have experience with Alzheimer's Disease. Our synthetic biology approach to diagnosing and treating Alzheimer’s disease was built and developed around the idea of an administrable therapeutic for patients with the disease. In order to get our system into the patient’s brain, he/she must be willing to receive it in whatever manner necessary. Thus, one important consideration we had for our project was how treatment and delivery would be perceived in the public eye. With this in mind, we designed and implemented a survey with which we sought to answer the question of which delivery method would be most acceptable for our system, not only in it's medical functionality, but also in it's social acceptability and potential reach. Our survey targeted members of the general public, and we aimed to learn what people of varying backgrounds thought about our project, and whether their background influenced their opinion. Ultimately, we aimed to determine what method of delivery for our system was most agreeable to the public, in order to help us decide which delivery mechanism we would design our system to support. The methods of delivery we were considering could all be categorized as either ex vivo or in vivo cell modification. Specific details about potential delivery mechanisms can be found here.
The Survey
Fig. 1: Survey distributed to members of the general public.
Expected Results
This survey included several background questions, allowing us to gate the participants’ responses based on age, level of education and familiarity with Alzheimer’s disease. In light of our proximity to several Boston universities, companies and research centers, we anticipated that our population would contain a higher than average proportion of students and scientific professionals.We also expected that the majority of the respondents would know someone who has/had Alzheimer’s disease, and would claim some familiarity with the health effects of the disease.Despite its prominence in today’s science and technology, gene therapy is merely more than a buzz-phrase for most people. As such, we expected that most of our respondents would not understand the term or its implications (respond “don’t know” or disagree with gene therapy for themselves or their loved ones). Ultimately, we expected that a person’s comfort level with the delivery method would increase as the method became less invasive - we anticipated that people would be more comfortable with blood injection than spinal injection or brain surgery, and that a total number of respondents would prefer blood injection over the other 2 methods.Moreover, we expect that knowledge of Alzheimer's, especially personal experience, would make people more receptive to all forms of treatment in general.
Methodology
The aim of our survey was to determine how members of the general public felt about the three possible methods of physical delivery of our system: brain surgery, spinal injection and blood injection. Each of these would require a certain combination of vehicle and target (for example, a blood injection would require a viral vector that targets neurons). Once we had determined exactly what we wanted to glean from the public, we wrote the survey questions that directly addressed these concerns. We then wrote several “set-up” questions that would enable us to determine each respondents’ familiarity with the concepts of gene therapy and Alzheimer’s disease (to help us see whether people would want to receive our system at all, and how their willingness to receive a therapeutic affected their level of comfort with the different delivery methods). Once the survey was constructed, we beta-tested it on members of the MIT community, including professors, post-doctoral candidates, undergraduate and graduate students. We took into account their comments and suggestions, as well as any instances of misinterpretation, and modified the survey to address these issues. The completed survey was distributed by members of our team every day over the week of August 11-15th at the Boston Commons. We handed out surveys to any willing respondent, and offered a piece of candy as incentive for participation. A proportion of our surveys was distributed online by the Tufts iGEM on our behalf.
Results
*Personal Experience and Willingness to Accept Preventive Measures* Fig. 2: Graph titles denote whether the depicted sample knew someone with Alzheimer’s. The individual slices represent the proportions of answers to the question “I would be willing to take preventative measures against Alzheimer’s”. We expected that people with personal experience of Alzheimer’s would be more willing to take preventive measures than those who don’t. Thus, we took the null hypothesis that no difference between the distribution for the two exist and carried out a chi-squared test of homogeneity. However, no significant difference exist between the two distributions. (P=.2512) Generally, people are open to preventive measures against Alzheimer’s regardless of personal experience with the disease. *Personal Experience and Willingness to Use Gene Therapy* Fig. 3: Graph titles denote whether the depicted sample knew someone with Alzheimer’s. The individual slices represent the proportions of answers to the question “I would be comfortable with gene therapy for me/my loved ones as treatment for Alzheimer’s”. Given that gene therapy is becoming a prominent experimental treatment method, we expected people with personal experience with Alzheimer's would also be more willing to use gene therapy. We took the null hypothesis that no difference between the distribution for the two exist and carried out a chi-squared test of homogeneity. No significant difference was found and both samples seem to be ambivalent to using gene therapy for treatment. (P=0.6951)This suggests that experience with Alzheimer’s doesn’t influence people’s openness to treatment options. *General Receptiveness to Brain Surgery, Spinal Tap, and Blood Injection* A test of homogeneity was applied to each of the three delivery mechanisms to see whether experience with Alzheimer’s, familiarity with gene therapy, and age influenced the responses. No significant difference was found as responses appeared homogeneous for all factors. Thus, we combined the samples to gauge how the general public received each of delivery mechanisms. Fig. 4: Individual graph titles denote the delivery mechanism in question. The individual slices represent the proportions of answers to the question “I am comfortable with the delivery method in question”. A significant difference was found between the response to the delivery mechanisms. (P-value = 1.79E-6) The different proportions can be easily seen in the pie charts where the proportion of positive responses increased while the proportion of negative responses decreased as the treatment becomes less invasive, from brain surgery, to spinal tap, and ending at blood injection with the most positive response.
Conclusion
The results of this survey imply that neither a person's experience/familiarity with Alzheimer's disease nor knowledge of gene therapy affects his/her willingness to consider preventative or therapeutic measures against the disease. People are, overall, more comfortable with less invasive procedures to deliver synthetic circuits into their bodies. Blood injection, the least invasive form of system delivery, received the highest proportion of positive responses of "willingness". People are more comfortable with blood injection than spinal injection, and expressed the most opposition to brain surgery (the most invasive method of delivery). This, paired with our research into the benefits and drawbacks of each potential delivery method (elaborated here), informed our decision to design our system for delivery into neurons via blood injection.