Deadline for abstract submission extended until: February 15, 2018
Please Consider submitting your paper to our panel at STS Italia Conference:
Track 9 - Possibilities of Inclusion and Action from ‘Below’ in Medical
Governance
http://bit.ly/2EisWgj
The organization of medical research and practice was traditionally
perceived as the
prerogative of expert knowledge. Such exclusivity entailed a specialized
discourse,
monopoly over knowledge, guild-like organizational arrangements, authority
and
hierarchical power relations. However, in the last two decades cracks have
opened in
expert monopoly over medical knowledge and practice. The democratic model
pursued by western liberalism\capitalism has been extended to the medical
domain,
both on individual level, where patients are empowered to act as informed
consumers using their own judgment and market options, such as
direct-to-consumer
genetic testing; and on public level, where following the paradigm of
“participants as
partners”, citizens are engaged in the design and governance of medical
research,
embodied in medical programs grounded on volunteer cohorts like the
American “All
of Us Research Program”. The acknowledgement of lay citizens’ authority
in
medical
decisions regarding either themselves or the community, produces ambivalent
effects. It makes possible the concurrent shaping of medical practices by
multiple
actors. Types of actors range from patients’ and patients’ relatives’
groups, to activist
groups and non-profit organizations for communal funding of therapies. This
obviously leads to conflicts over authoritative knowledge. On the one hand,
this
pluralism is seen as a guarantee for individual autonomy and for equitable
pursuit of
the public interest. On the other hand, in the medical domain, legitimacy
of lay
knowledge is often questioned, as in the debate on the use of “Dr.
Google”
for
medical advice, or over resistance to vaccine administration. Moreover,
advances in
precision medicine require in-depth knowledge in molecular biology and
genomics,
thus excluding lay citizens from influencing medical decision-making. In
all these
contradicting new possibilities, patients and publics are still on the
receiving side,
relying on knowledge produced and handed over by experts.
In this panel, we wish to ask whether more substantial practices of
democratizing
contemporary medical governance are possible. Can we imagine a situation
where
medical innovation, clinical practice and performances of medical knowledge
are
participatory not only as a slogan? Where the position of patients as
‘receivers’
shifts? Where broader involvement of publics and individuals in medical
decision-making
is perceived as a legitimate form of action? On the structural level, can
the
benefits of advanced biomedical translational research be distributed in
equitable
ways? We welcome papers critically engaging with these questions and related
issues in current biomedicine, from theoretical and empirical perspectives.
Convenors:
Nadav Even Chorev (European Institute of Oncology)
Ilaria Galasso (University of Milan & European Institute of Oncology)
Giuseppe Testa (University of Milan & European Institute of Oncology)
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