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Genome Med. 2014 Jan 31;6(1):8. doi: 10.1186/gm525. eCollection 2014.

Disentangling public participation in science and biomedicine.

Author information

1
Institute for Society and Genetics, UCLA, 1320 Rolfe Hall, UCLA, Los Angeles, CA 90095, USA ; UCLA Department of Information Studies, GSE&IS Building, Box 951520, Los Angeles, CA 90095-1520, USA.
2
Institute for Society and Genetics, UCLA, 1320 Rolfe Hall, UCLA, Los Angeles, CA 90095, USA ; Department of Public Policy, Luskin School of Public Affairs, UCLA, 3250 Public Affairs Building, Box 951656, Los Angeles, CA 90095-1656, USA.

Abstract

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.

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