Patients

We are aware that general acceptance of the use of synthetic biology in everyday life may sometimes be an issue in the society. We wondered if the perception of the applications of synthetic biology use is different when it comes to medical problems. We prepared a questionnaire about the use of new therapeutic systems for biopharmaceuticals for patients with hepatitis C (link: Questionnaire). We asked them on their perception of the potential medical application of our designed therapy and their views on synthetic biology. The majority of them expressed the enthusiasm for the medical application of our ideas and a surprising half of them were willing participate in a potential clinical study.

The questionnaire for patients with hepatitis C was distributed among the patients who are on the interferon therapy and were at the Department of Infectious Diseases at the University Medical Centre Ljubljana at the time (Figure 1). We discussed in person with patients, explained them the idea of our project and asked them if they would be willing to participate in our survey.

Figure 1. Team members Zala and Fedja in the examination room with Jelka Megliè Volkar, MD, a specialist infectologist (first from the left).

24 patients infected with hepatitis C filled out the questionnaire. The majority of them were men (67%) and the average age of patients was 45 years. Half of the patients graduated from high school, 29% finished only primary school and 21% of patients had a university degree.

The number of patients participating in the survey was small therefore we cannot draw any strong conclusions from the results, however they do provide some interesting results. A comparison of all the results of our survey including the general (mostly student) population and journalists can be found here: link: Media and general public.

59% of patients reported mild (34%) or strong (25%) side effects and only 8% of patients had no side effects (Figure 2, left). 4% of the patients felt that the need for the regular subcutaneous application of interferon has a strong influence on the quality of their life, 63% of patients felt this has medium influence and 33% of the patients felt that this type of application has no influence (Figure 2, right). The majority (71%) of patients felt that it would be a good idea to invent a new drug delivery system, which would prevent subcutaneous injections of interferon and only one patient disagreed with this.

Figure 2. Adverse effects of interferon therapy (left) and negative impact of subncutaeous application of interferon on life quality (right).

The results of our survey showed that patients with hepatitis C showed enthusiasm for this new type of therapy. 71% of them think it would be beneficial to develop a therapywith human cells which would produce biological drugs inside the diseased tissue (link: Media and general public). The most important requirements for this type of therapy are, in the view of patients, efficiency (57%), safety (33%) and price (10%) (Figure 3).

Patients are the only group that could provide information on questions related to the specifics of biological therapy. We noticed that a large majority of patients receiving biological therapy exhibits side effects (87%). Injecting biological drugs had in this context only medium effect on the quality of life (Figure 2).

Among the considerations that would affect the application of therapy patients considered as most important efficiency, followed by safety (Figure 3). Price does not seem to be very important issue, which reflects the organisation of health care in Slovenia. It is interesting that patients consider, in contrast to general public, that the access to biological drugs in Slovenia is satisfying (link: Media and general public, Figure 7).

Figure 3. Which of the following would be most important for you regarding [a microencapsulated synthetic cellular device] treatment: efficiency, safety, price, ethical considerations?

We were pleased to see that 50% of the questioned patients would be willing to participate in a clinical study of this type of therapy, 37% might consider it and 13% of patients would not be willing to participate (Figure 4, left). Certainly clinical studies could proceed only after stringent preclinical studies would show favorable results and safety of this type of therapy. Involvement of genetic modification as the technique that has a bad connotation in the general public did not sway the majority of patients (70%) to change their previous answer from yes or maybe to no (Figure 4, right).

Figure 4. Would you participate in study using that kind of therapy? (left) Would you change your previous answer from yes/maybe to no, if you knew that these cells are modified in laboratories? (right)