Human Practice Overview

The Human Practice reflexion is inherent in our project, first of all because we are working on a treatment. Thus our Human Practice has gone through 5 phases.

Phase 1: Consultation of experts

Since the start we have felt the need to build this project with specialists of hæmochromatosis both patients and scientists. The first ones were important to insert our project in the reality of a disease that none of us really knew, and furthermore they are the first to be concerned: we had to do our best to get them interested in our project and to make our project understandable by them. Gaël Nicolas was our main help on the scientific aspect of hæmochromatosis.

Phase 2: Safety and responsibility

Very quickly we were confronted to the safety of treatment: even before fulfilling our aim of chelating iron in the duodenum we had to think about all the scenarios involved by such a treatment. The entire team worked together in order to build a consequence tree. This tree tries to be exhaustive: it is only then that we can determine the more probable scenarios by biologic reflexion and modelling. This consequence tree is a way to be assured that our treatment is not only safe for the patient but responsible too. We can not afford to have a synthbio-medicine that would endanger other people or the environment.

Phase 3: Patients' perceptions

Because having some patients' opinions was interesting but not sufficient we decided to conduct a study as important as possible. We drew up a survey that was spread by associations of hæmochromatotics. This survey is still going on.

Phase 4: Meeting and discussion

At this point of our work we thought it proper to organise a seminar about the general question of hæmochromatosis and the particular approach of our treatment. This seminar will be a privileged moment to bring all the persons we have worked with together. Two round tables are planed in order to discuss further the questions raised by our project and our treatment.

Phase 5: Science and technique in iGEM culture

This last phase is a bit different. In fact it is not properly the last phase: this part is an experience of embedded philosophy conducted throughout the project. As such this phase reflects more what I, a philosopher and a bioethician, observe than what the team would have thought about by itself. Nevertheless the team takes actively part in this reflection. This reflection started with the idea that synthetic biology was usually perceive as a science, but seldom as a technique, though everyone is always talking about engineering and functions and aims. The modified bacteria as a precise thing to do.

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