The Role of Patient Advocacy Organizations in Shaping Genomic Science

Abstract

Patient advocacy organizations (PAOs) are nonprofit groups that represent patients and families affected by a significant medical condition or disease. We review some of the different approaches that humanities and social researchers use to study PAOs. Drawing on this recent scholarship, we describe some contemporary patient groups and explore how PAOs can collaborate with biomedical researchers to advance genomic science. We highlight research that aims to describe how PAOs are contributing to multiple aspects of biomedical research, including study design, definition of research goals, data collection and analysis, dissemination of results, and research funding. We also describe several challenges that genomic researchers may encounter in collaborations with PAOs. Throughout our review, we focus on the manner in which new PAO roles challenge traditional boundaries between researchers and subjects, thereby redefining the relationship of patients to science. We consider how this shift may affect our view of scientific collaborations and impact genomic researchers in the future.

Directing the Future of Gene Therapy in Cyprus: Breakthroughs, Subjunctivities, and the Pragmatics of Narrative

“…As Roy Porter's (1985) foundational article on grassroots health care conveys, the rise of biocapitalism parallels the rise of a “medical history from below.” Porter's language is indicative of previous modalities of patient politics, which consisted mainly of resistance rather than participation in technological progress. Recent scholarship moves beyond such opposition by showcasing the multilayered fabric of biosociality (Rabinow 1992) and the political capacity of patients for inclusion in governmental decision‐making (Epstein 2007a) as well as the research agendas of scientific institutes (Callon and Rabeharisoa 2008; Koay and Sharp 2013).…”

Participatory Genomic Research: Ethical Issues from the Bottom Up to the Top Down

“…Since the 1980s and 1990s, patient advocacy groups have partnered with scientists to build the evidence base for their causes, becoming indispensable to the scientific knowledge production process (26,38,39). Although patient advocacy has historically involved starting a support group or foundation, working to empower affected individuals, and challenging scientific expertise on rare diseases, more recently patient advocacy groups have begun to use the language of collaboration to describe their interactions with genetic and genomic researchers (26,38,39). Today, especially in genomics and for rare diseases, participants are finding their own investigators and raising funds for research, searching a growing number of open databases to find others whose children have a mutation in the same gene, leveraging direct-to-consumer genomic test results, and even conducting the research or experiments on their own as citizen scientists.…”

Tactics of association

“…By associations, like the PTA, I mean collectives that are united by a common predicament, danger, political goal or ideology. Patient groups are increasingly gaining a role in the decision‐making processes of governmental, entrepreneurial and scientific bodies (Callon and Rabeharisoa ; Koay and Sharp ). Although such political entities saturate current political landscapes, and here I am not referring explicitly to biomedicine, existing anthropological literature, like de Certeau's, largely emphasises the individual, improvisatory and contextual dimensions of tactics (but see Juris ).…”