32 research outputs found

    Disentangling Public Participation In Science and Biomedicine

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    BACKGROUND: This article provides a framework for disentangling the concept of participation, with emphasis on participation in genomic medicine. We have derived seven ‘dimensions’ of participation that are most frequently invoked in the extensive, heterogeneous literature on participation. To exemplify these dimensions, we use material from a database of 102 contemporary cases of participation, and focus here on cases specific to science and medicine. We describe the stakes of public participation in biomedical research, with a focus on genomic medicine and lay out the seven dimensions. DISCUSSION: We single out five cases of participation that have particular relevance to the field of genomic medicine, we apply the seven dimensions to show how we can differentiate among forms of participation within this domain. SUMMARY: We conclude with some provocations to researchers and some recommendations for taking variation in participation more seriously

    Birds of the internet:a field guide to understanding action, organization, and the governance of participation

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    Scholarly attention to new forms of participation on the Internet has proliferated classifications and theories without providing any criteria for distinctions and diversity. Labels such as ‘peer production’, ‘prosumption’, ‘user-led innovation’ and ‘organized networks’ are intended to explain new forms of cultural and economic interaction mediated by the Internet, but lack any systematic way of distinguishing different cases. This article provides elements for the composition of a ‘birder's handbook’ to forms of participation on the Internet that have been observed and analyzed over the last 10 years. It is intended to help scholars across the disciplines distinguish fleeting forms of participation: first, the authors highlight the fact that participation on the Internet nearly always employs both a ‘formal social enterprise’ and an ‘organized public’ that stand in some structural and temporal relationship to one another; second, the authors map the different forms of action and exchange that take place amongst these two entities, showing how forms of participation are divided up into tasks and goals, and how they relate to the resource that is created through participation; and third, we describe forms of governance, or variation in how tasks and goals are made available to, and modifiable by, different participants of either a formal enterprise or an organized public
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