Biomedical Engineering Reference
In-Depth Information
In particular, these three categories of potential consumers are
influencing the kinds of regulations emerging around new health
biotechnologies, the amount of money being directed to basic and
translational research, and the values that are defining the field of
emerging stem cell research. Patient activism in California resulted
in the passing of the California Stem Cell Research and Cures Act
2004; medical tourists have forced questions about the effectiveness
of existing restrictions to be addressed; and early adopters
are demonstrating that, beyond cures for degenerative diseases,
anti-ageing and life extension technologies are going to be the most
lucrative markets to emerge in the first instance.
2.1.1 Patientactivists
Patient activists have long had an important role in getting new
health technologies to market. Detailed work on AIDS activism in
the US since the start of the epidemic, for instance, has powerfully
demonstrated how patients and their advocates and carers can
influence key decisions around the availability of experimental
treatment (Epstein, 1998). In the case of clinical trial testing for
AIDS drug treatments, communities of activists were able to
challenge the way that expertise is configured and how this reflected
on the construction of knowledge, and thus policy, about the AIDS
epidemic (Epstein, 1998). More recently, a noticeable expansion in
this kind of activism around health matters has been defined as a
'politics of vitality', in which increasing numbers of people are
involved in contesting the meanings of new biomedical capacities,
transformations in health systems and the relationships between
science and the broader community (Landzelius, 2006).
Reflective of this emergence of patients as stakeholders in new
biotechnologies, patient organizations have been integral to the
debate over stem cell research worldwide. Public deliberations in
Australia, Canada and the European Union all involved widespread
discussion and engagement with representatives from patient
organizations. Although the extent to which community
representatives have been consulted has been criticized, the inclusion
