Re-examining medical modernization: framing the public in Finnish biomedical research policy

Abstract

Despite recent evidence that suggests that knowledge production within the medical community is increasingly based on knowledge-making coalitions or what some have called the co-production of knowledge, there remains a strong expert led policy agenda in many countries in relation to human genome research. This article reports on the role of experts in defining the scope of discussion in relation to the biomedical use of human tissue sample collections or biobanks in Finland using the case of the Genome Information Center. It is argued that the rhetorical strategies should not be understood simply as subversive tactics, but rather as ways of engaging the public within particular contexts of creating commercial expectations and visions which are easier to negotiate from a policy perspective.

The contingency of psychiatric genomics in a Dutch research consortium

“…Research projects were set up on a larger scale, collaborations between several disciplines were established and 'society began to talk back to science' (Barry, 2001;Hess, 2004;Tupasela, 2007). These developments occurred in the Netherlands later in psychiatry than elsewhere in medicine.…”

Marginalizing Experience: A Critical Analysis of Public Discourse Surrounding Stem Cell Research in Australia (2005–6)

“…As the most persuasive form of argumentation, participants use rhetoric as an effective means of communicating in public discourse (Tupasela 2007). The use of rhetoric reflects the values, beliefs and opinions of participants and when no other means of legitimation are available, participants in public discourse around science policy may establish credibility and legitimacy by rhetorically adopting the norms, values and ideals of accredited discourse communities (Gamson 1990).…”

Consent and Research Governance in Biobanks: Evidence from Focus Groups with Medical Researchers

“…Moreover, despite international attempts at harmonization, there is widespread recognition that there are diverse approaches to the governance of biobanks [3,4]. This can result in a lack of certainty in biobanking research, thus increasing the (transaction) costs of many studies.…”

“…The particular challenge for consent that biobanks highlight relates to their very nature. As Tupasela [3] notes: ‘The use of large epidemiological sample collections in genome research has raised numerous issues concerning the status of informed consent in reusing samples for purposes other than those they were originally intended for’ (p. 66). To address this, patients are increasingly asked to give ‘broad’ consent that is intended to cover many or all possible future research uses of their samples [8,9].…”