a) Inform/educate (prior to consultation or participation/deliberation) |
The forum had four broad objectives: (i) Inform a representative sample of citizens of the competing interests and perspectives on biobanking, […] |
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Long film |
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Short film |
6 |
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Informational/introductory presentation |
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Literature (booklet, pamphlet, etc.) |
11 |
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Showcards |
2 |
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The overall goal of this component of the consultation and communication plan was to educate residents of the 19 Zip code region about the PMRP through talks to community groups and media prior to enrollment, and then through regular newsletters after study participation. |
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Workbook (to guide group discussion) |
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Presentation of newspaper article |
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Vignettes (Description of current studies/standardized scenarios) |
2 |
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Media release (to announce project) |
1 |
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Blog (online) |
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b) Consult the public to gather attitudes, opinions, preferences, etc. either |
To assess the general attitudes towards genetic research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such research, participants from the NSLIJ hospital system were surveyed. |
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c.1) …without further discussion: |
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• as a means to use this input for further policy development/decision-making without subsequent active engagement of the consulted public |
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Questionnaire |
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• or in advance of/as part of a public engagement activity |
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Questionnaire guide |
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Written Survey |
16 |
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Telephone survey |
3 |
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Online survey |
3 |
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Phone interview |
3 |
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Face to face interview |
11 |
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Email questions |
1 |
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Ranking of research scenarios (by participants) |
3 |
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Discrete choice experiment |
1 |
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To assess the public's perception of biobank research and the relative importance they place on concerns for privacy and confidentiality, when compared with other key variables when considering participation in biobank research. |
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Interactive discussion game |
1 |
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We explored Canadian values regarding storage and use of NBS samples for various purposes and the forms of parental choice for anonymous research with NBS samples. |
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c.2)…with further discussion: |
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Focus Group |
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Group deliberation/dialogue |
5 |
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Small group discussion/deliberation |
6 |
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Large group discussion/deliberation |
4 |
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Feedback Session |
1 |
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Panel interaction |
1 |
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Citizen jury (covers c2 and d1) |
1 |
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Moderator guide (guiding focus groups) |
3 |
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Ratification process (by group, of recommendations/resolutions) |
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c) Engage the public actively in policy development/decision-making processes |
[…] because the purpose of the research was to inform policy development within NBS and an overview of all of the categories provides guidance on these issues. |
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d.1) Disseminating/translating PIA outcomes: |
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Dissemination via print and electronic media |
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Recommendation report (written) |
4 |
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In a significant refinement of methods, we focus on providing public input to institutional practice and governance of biobanks using a tailored workbook structure to guide participants' discussion. |
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One-day conference |
1 |
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Group recommendations (spoken) |
2 |
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Community project oversight, project advisory |
3 |
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The results of this deliberation offer collective responses that should be understood as tailored policy input, rather than public opinion measurement. |
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Meetings to discuss results |
2 |
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d.2) Considering PIA outcomes in policy: |
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Decision-maker response/feedback (to deliberant's recommendations) |
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d) Investigate impact of PIA on participants |
In a real-world experiment, this study on synthetic biology investigated the effect of information uptake and deliberation on opinion certainty and opinion valence in natural groups. |
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See c.1) and c.2) for methods |
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As part of our deliberative engagement, we surveyed the participants both before and after the engagement intervention to determine whether there were attitudinal changes. |
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The purpose of this paper is to explore whether members of the public recall TSUS and whether they use the study to interpret current biomedical research. |
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e) Describe PIA method |
In response to this gap in the literature (and to address the deliberative norms of transparency and publicity), the purpose of our paper is to […] describe the processes by which we translated these outputs to policy. |
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n.a. |
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The purpose of this paper is to illustrate a novel method for developing meaningful public input on ethically contentious issues in institutional biobanking policy. |
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f) Test PIA method |
The main goals of the PEGV Project were to test a community engagement model, […] |
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See a)–d) for methods (the respective PIA method was tested by running the individual methods described above, for instance by handing out reading material to participants) |
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[…] 2 determining the feasibility of conducting a citizens [sic] jury to elicit the views of the public on priorities for HTA; |
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