Abstract
BackgroundA recent report from the British Nuffield Council on Bioethics associated ‘emerging biotechnologies’ with a threefold challenge: 1) uncertainty about outcomes, 2) diverse public views on the values and implications attached to biotechnologies and 3) the possibility of creating radical changes regarding societal relations and practices. To address these challenges, leading international institutions stress the need for public involvement activities (PIAs). The objective of this study was to assess the state of PIA reports in the field of biomedical research.MethodsPIA reports were identified via a systematic literature search. Thematic text analysis was employed for data extraction.ResultsAfter filtering, 35 public consultation and 11 public participation studies were included in this review. Analysis and synthesis of all 46 PIA studies resulted in 6 distinguishable PIA objectives and 37 corresponding PIA methods. Reports of outcome translation and PIA evaluation were found in 9 and 10 studies respectively (20% and 22%). The paper presents qualitative details.DiscussionThe state of PIAs on biomedical research and innovation is characterized by a broad range of methods and awkward variation in the wording of objectives. Better comparability of PIAs might improve the translation of PIA findings into further policy development. PIA-specific reporting guidelines would help in this regard. The modest level of translation efforts is another pointer to the “deliberation to policy gap”. The results of this review could inform the design of new PIAs and future efforts to improve PIA comparability and outcome translation.
Highlights
A recent report from the British Nuffield Council on Bioethics associated ‘emerging biotechnologies’ with a threefold challenge: 1) uncertainty about outcomes, 2) diverse public views on the values and implications attached to biotechnologies and 3) the possibility of creating radical changes regarding societal relations and practices
This study assessed a systematically-derived sample of 46 peer-reviewed journal articles reporting on public involvement activities (PIAs) in the field of biomedical research and innovation
The 35 public consultation and 11 public deliberation/participation activities used a broad range of different wordings for Public involvement activities (PIAs) objectives and corresponding methods
Summary
A recent report from the British Nuffield Council on Bioethics associated ‘emerging biotechnologies’ with a threefold challenge: 1) uncertainty about outcomes, 2) diverse public views on the values and implications attached to biotechnologies and 3) the possibility of creating radical changes regarding societal relations and practices. Specific social, ethical and legal challenges, such as the communication and commercialization of research results, the balancing of individual rights against the collective good, and data protection, to name but a few, require careful consideration and governance This may be relevant to the approval and application of new biomedical technologies, and to the processes of the underlying research [3,4,5]
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