Title: The Consciousness of the Gene

Author: Giuseppe Schiavone

Discussed on: July 2010

The work can be divided into three sections. The first one concerns production and
communication of data and information regarding risk in a medical environment. Most of the
issues found in the literature were related to cognitive biases and limitations affecting both the
production of data and their communication. These issues were found to be relevant
regardless of whether people confronting with information were lay or professionals. I
focused mainly on difficulties arising from different risk formats as far as communication was
concerned. The second part was intended to deal specifically with genetic data and how these
are used and implemented in healthcare practice. The purpose was to show that genetic pieces
of information are essentially risk information thus being subject to the same problems that
affect the latter.
In the last part I tried to depict an overall and thorough view of how genetic datas are in fact
used by people who choose or find themselves forced to confront with them. Going through
different diseases I pointed out the "social" outcome of each and every DNA screening
suggested: most of the times, the cases collected in the scientific literature showed a covert
defensive response to those information, in that frequently no effect at all was registered on
how people perceived themselves after having had access to their DNA data (this happened
also for people who deliberately asked to be involved in screening programmes). These
results suggest that there is still a long way to go before a real consciousness of everyone's
own genes is made available. The thesis, though, showed one example of an effective attempt
to deliver a new, genetic, identity. Castellani et al. studying cystic fibrosis, conducted a
research in the North East of Italy finding that, in the part of the region (the Eastern part)
where the screening was promoted extensively (not only to those suspected of carrying the
mutation because of the diagnosis on a close relative), there had been an effective reduction in
the presence of the mutation responsible for CF. Such a profound change implies a real
change in reproductive behaviour that cannot be considered to be disjoint from a deep change
in the identity of people acting such a behaviour.
Despite being no experimental work, the thesis has the merit of pointing the importance of
such discoveries in order to state clearly that it is actually possible to single out traits that
make policies for promoting health improving behaviours more effective.