This post is part of Bill of Health’s symposium on Critical Studies Citizen Science in Biomedical Research. Here, Ilaria Galasso and Giuseppe Testa share their comparative case studies of the Precision Medicine Initiative and the 100K Genomes Project, examining the kinds of citizen science pursued in precision medicine projects. Background on the symposium is here. You can call up all of the symposium contributions already published by clicking here.
Our post investigates the participatory dimensions in health and healthcare by analysing the cutting-edge approach of precision medicine, its societal impact, its discursive framings and its (potential) contribution to further public health and civic engagement.
Precision Medicine is defined by the NIH as “a groundbreaking approach to disease prevention and treatment based on people’s individual differences in environment, genes and lifestyle”(nih.gov), aimed at “delivering the right treatments, at the right time, to the right person”(whitehouse.gov).To pursue this aim, precision medicine efforts typically work on large cohorts of people to dissect individual differences in health and disease. Thence, massive large-scale involvement of “lay” participants is a key resource of precision medicine initiatives.
We have been undertaking a comparative analysis of the Precision Medicine Initiative (PMI) in the US (nih.gov) and the 100K Genomes Project (100KGP) in the UK (genomicsengland.co.uk) as case studies to scrutinize the kind of citizen science pursued in precision medicine projects, thereby probing which participatory models they implement and what types of civic engagement and democratic ideals they further. In particular, we focus on: 1) inclusion (who can participate?) and 2) the quality of participation (how is participation articulated?).
- According to the eligibility criteria, everyone living in US, with no restrictions, is eligible to be part of the PMI research cohort, while the 100KGP, given its much more specific focus, only involves cancer and rare disease patients. Moreover, concerning active involvement in the organisation of the project itself, the forms proposed by the PMI for collecting feedback and proposals are universally open, while only the subjects of the research itself or their carers can have voice as “lay” people in the organisation of the 100KGP. At both levels, according to eligibility criteria, the PMI turns out to be more inclusive than the 100KGP. Yet, an important distinction needs to be made between the theoretical potential for participation versus the actual capacity to do so depending on socio-economic status: several practical and socio-cultural obstacles, especially related to the PMI requirement of keeping wearing electronic devices to share data, could in effect prevent certain segments of the population (the elderly, the most disadvantaged…Galasso-Testa 2015) from participating, making the PMI more inclusive in theory than in practice.
- Concerning the “quality” of participation, we refer to the theoretical model by Kelty and Panofsky (2014), who consider seven dimensions to distinguish proper participation from tokenism or even exploitation. By analyzing the initiatives’ official documents, and by participating ourselves when possible (in the calls for comments by the PMI), we scrutinized these dimensions in our case studies. We found that the 100KGP more fully satisfies participation criteria than the PMI: the main deficiencies in PMI are that the outcomes of the public consultation elements are not publicly traceable, and that, given the private organisation of the American healthcare system, some participants might end up not having access to the therapies developed through the project they participated in.
From our analysis, and on the basis of Kelty and Panofsky’s analytical framework, it thus emerges that the PMI is more inclusive but less participatory than the 100KGP, and vice versa. Both projects are currently unsatisfactory in terms of the depth of democratic engagement of the citizen science models that they embody.
The civic engagement model proposed by the 100KGP is a form of access limited only to experts and to the research subjects: it could be considered “research subject science” rather than “citizen science”.
On the other hand, the civic engagement model proposed by the PMI, while theoretically accessible to every citizen, appears to be wanting in terms of the effectiveness of participatory activities, thus running the risk of tokenism and becoming an instrument to build public trust among citizens rather than democracy: PMI could be considered a strategy for “citizen engagement” rather than “citizen science”.
It is important to remark that our conclusions are provisional, given that the PMI is still in its preparatory phase. Further analyses of participation will be necessary following its implementation, as well as scrutiny of the possible benefits of effective inclusion to public interests, and the dichotomy between theoretical and actual participatory capacities.