Julie ROTHEN, Université de Fribourg , Switzerland
Marie-Pierre CHEVRON, Université de Fribourg , Switzerland
The numerous proposals offering to find out about one's ancient origins, to search for an unknown mother or father, or genetic profile combined with psychometric tests to bridge the gap between innate potential and acquired skills are prompting more and more people to carry out genetic analyses, without them understanding what they are dealing with, nor what the consequences might be. The discovery, for example, of a previously unknown half-sister raises many questions, constitutes an invasion of the privacy of the parents and could have important consequences on the trust of family structure. In addition, the vast majority of people who request such test don’t have the knowledge required to understand the possible abuses that may occur from such practices with regard to the confidentiality of personal genetic data.
To fill this knowledge gap and to raise awareness of these issues among a wide public, we developed experimental workshops and teaching sheets for schools. The latter offer to carry out analyses of genetic profiles in the classroom to simulate the detection of genetic mutations in a gene likely to influence the risk of developing cancer, a neuromuscular disease, or to illustrate the use of genetic profiles in a criminal investigation scenario. Through lab experiments, numerous topics can be introduced into science classes and be discussed. The didactic sheets propose to promote gradual development of genetic literacy by searching for arguments in scientific texts, writing questions, building argumentative maps while debating.
These proposals have been successfully tested with hundreds of adolescents in Switzerland. They allow them to become familiar with the laboratory techniques used to get into the heart of our cells and to understand what personal information are needed to make the individual genetic information speak for themselves. These knowledge enables then young people to raise questions or even concerns about the management of these sensitive data and the development of biotechnologies in the field of health. For example, “since personalised medicine is based on our knowledge of individual genomes, should we therefore have access to the genetic information of each of us?”; “Is it reasonable to genetically correct the reproductive cells of a person who learns that he or she is going to develop an inherited neurodegenerative disease so that he or she can have children who are not affected?”; “Given that the techniques are now available, should all pregnant women in Switzerland be suggested to have DNA of their embryos systematically analysed and, in the event of a genetic anomaly, use CRISPR-Cas9 to correct it?”; "Since we know that the environment plays an essential role in the development of a phenotypic trait (intelligence, cancer, empathy, cardiovascular disease, etc.), shouldn't we be concerned only with developing an optimal environment for everyone? »… interesting questions to be discussed!
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