Personal and social implications of genomic knowledge
Author: Lucia Martinelli – MUSE – Science museum, Italy
Co-authors:
- Patrizia Famí – MUSE – Science museum, Italy
- Lucia Martinelli – MUSE – Science museum, Italy
How much do we know, would we like/fear to know about our physical and psychological genetic traits – whether we like them or not – and about talents and diseases recurring in our families? Is it a question of a “destiny” marked by genetic inheritance, life styles or epigenetics? The growing technology and knowledge about human genome is discovering markers for genes involved in diseases and may anticipate predisposition awareness. Genomic information is available in genetic tests also accessible on the Internet. Regarding health, the easy access to this knowledge offers both opportunities and difficult choices, and the risk of a new genetic determinism. During the 2018 and 2019, we collected a number of visitors” narratives regarding visions and concerns about their own genetic predispositions, traits, attitudes and personality. These stories of “everyday-genetics” were written by the public on a notebook in the main MUSE temporary exhibition “The Human Genome. What makes us unique”. The notebook was displayed in a cozy corner of an immersive scenography reproducing a square to engage museum’s visitors in the private and the social implications of genomic technology development, and to stimulate their willingness to share their intimate stories. Here, visitors could hear narratives we conceived ad hoc: they were inspired by real cases available in the scientific literature, in the media, and on the Internet and websites of medical and patient organizations. The confidences left by our visitors are a fresh collection about citizens” awareness and knowledge on personal genetics and offer interesting feedback to better develop public our engagement activities regarding biomedical topics. Moreover, in our projects involving stakeholders of the medical field, they can give interesting insights to support a patient-centered medicine based on a better knowledge of citizens” feelings about their own genetics and may contribute to a more empathic patient/medical doctor communication.
The author has not yet submitted a copy of the full paper.
Presentation type: Insight talk
Theme: Technology