“Let’s pull these technologies out of the ivory tower”: The politics, ethos, and ironies of participant-driven genomic research

摘要: This paper investigates how groups of ‘citizen scientists’ in non-traditional settings and primarily online networks claim to be challenging conventional genomic research processes norms. Although these are highly diverse, they all distinguish their efforts from traditional university- or industry-based as being ‘participant-driven’ one way another. Participant-driven (PDGR) often work ‘labs’ that consist servers computing devices much wet lab apparatus, relying on information-processing software for data-driven, discovery-based analysis rather than hypothesis-driven experimentation. We interviewed individuals a variety across the expanding ecosystem PDGR, including academic groups, start-ups, activists, hobbyists, hackers, order compare contrast relate stated objectives, practices, political moral stances institutions expert scientific knowledge production. Results reveal despite diversity, share commitments promoting alternative modes housing, conducting, funding and, ultimately, sharing knowledge. In doing so, PDGR discourses challenge existing approaches governance well, especially regulation, ethics, oversight human information management. Interestingly, reaction genomics community this revolutionary has not been negative: fact, seems embracing ethos espoused by at highest levels science policy. As assimilates movement’s ‘democratizing’ views likely become normalized creating new tensions policy ethics.