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

Abstract

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

Unconventional settings and uses of human enhancement technologies: A non‐systematic review of public and experts' views on self‐enhancement and DIY biology/biohacking risks

“…Scientists, directly and indirectly, refer to the DIY biology movement (DIYBM) with different views on economics (e.g., innovation), politics (e.g., participation), and ethics (e.g., risks). The diversity of scientific conceptualization originates from the observation that the individuals, groups, and organizations within the DIYBM deviate differently from the common core (McGowan et al, ). The diversity derives from variables such as the location (i.e., virtual and/or physical), culture (e.g., European vs. American), group diversity (i.e., professional background and institutional affiliations) and group size.…”

“…Open‐science movement . According to Meyer (, p. 121), DIYBM is part of the “broader open‐science movement, a movement itself inspired by the open‐source movement that has developed since the 1990s” because it shares the ethos of the open‐science movement that “rejects the corporate privatization and patenting of scientific data, knowledge, and biological processes in favor of cooperative research and the free sharing of data and knowledge” (McGowan et al, , p. 497).…”

“…Citizen science movement . According to McGowan et al (, p. 497), the DIYBM reflects “the ethos and practices tied to the growing movement of ‘citizen science’” by “aspir(ing) to open the sphere of scientific expertise by drawing on the energy and capacities of large and widely distributed communities and by involving the participation of ‘lay scientists’ in research design and funding, and in collecting, analyzing, applying, and disseminating data.”…”

“…DIYgenomics has various benefits. The first benefit is related to the high willingness of the DIYBM to provide large‐scale genomic data to facilitate the progress of a wide range of genomic projects (McGowan et al, ). For example, the organization DIYgenomics encourages users to upload individual data to inform projects ranging from studies on vitamin deficiencies to social intelligence to accelerate advances in health management and preventive medicine (DIYgenomics, n.d.).…”

Open Humans: A platform for participant-centered research and personal data exploration

“…Patients often have a better understanding of their disease and needs than medical/research professionals [61,62] and that patient involvement can help catalyze policy interventions [63]. Examples include the studies on amyotrophic lateral sclerosis initiated by PatientsLikeMe users [64], crowd-sourcing e orts like American Gut [65], and a variety of other citizen genomics e orts [66]. It is likely that involving patients in clinical research can not only help minimize cost but can lead to drugs being brought to market sooner [67].…”