Daniel Santos

This article examines the role of patient organizations as mediators between patients and researchers in stem cell research in Australia. We conducted semi-structured interviews with stem cell researchers and patient organization representatives as part of a broader project to deepen public understanding and foster more robust scientific practices in stem cell-based research and therapies. We used Habermas’s Theory of Communicative Action as our theoretical framework to explore the relationships between patient organizations and researchers. Using this framework allowed the identification of two different ways of conceptualizing health and illness—one based on patients’ experiences, which we call “the lifeworld,” and another grounded on researchers’, health professionals’, and policymakers’ professional perspectives, which we call “the rational system.” We found that the different conceptualizations identified influenced the interactions between patients and researchers (and other professionals involved in the healthcare system). Patient organizations, then, act as articulators of patients’ viewpoints in this scenario, which can have advantages and disadvantages. We also found that researchers need to develop less transactional forms of communication with these organizations and that policymakers and regulators could benefit from developing guidelines to encourage researchers to use diverse strategies to engage more meaningfully with patients at individual and organizational levels.

In biomedicine and science more broadly, there is increasing emphasis on ‘openness’ in research practices both between those involved in research and with those who might benefit from the research. Such emphasis is often invoked because it is hoped, and often assumed, that more openness will promote greater productivity, transparency and trust in scientific research. These efforts have focussed on the availability and sharing of data and knowledge, along with more tangible resources such as biological materials. Certain types of resources are valued in particular ways, and these dynamics affect the extent to which they can be entrusted and shared with others and used in more collaborative scientific research (or not). In this chapter, we use stem cell research as a case study to examine: (1) how material resources (e.g. stem cell lines) are valued in distinct (but overlapping) ways compared to more text-based resources (e.g. data, knowledge), and (2) how the valuation of these resources informs relations of trust, sharing, communication and collaboration between researchers. We draw on empirical insights from interviews with stem cell researchers in Australia, conducted as part of a research project investigating the potential for increasing ‘openness’ in Australian stem cell research. Overall, we demonstrate how scientific resources are valued in multiple ways, which informs the possibilities for more open and collaborative scientific research.

Contemporary scientific research depends on sharing resources. Norms, cultures and infrastructures enable, incentivize or require sharing in particular ways. Commons are one type of infrastructure, and their key characteristics include the provision and governance of resources. Understanding how resources become part of a commons is critical for implementing arrangements that effectively facilitate scientific research. This article uses commons theory associated with knowledge resources to explore efforts to establish a registry for the Australian stem cell research community where registration is not a current norm. Analyzing the perspectives of stem cell researchers regarding registries, we make two contributions: (1) a conceptual contribution to the commons literature by explicating a more contingent understanding of resources, and (2) an empirical analysis of a relatively under-examined form of governance arrangement (i.e. registries). We emphasize paying close attention to the context-dependent processes through which resources are viewed as common-able and may subsequently become common-ed.