Recruiting for representation in public deliberation on the ethics of biobanks

Longstaff, Holly; Burgess, Michael

doi:10.1177/0963662508097626

Cited by 58 publications

(67 citation statements)

References 17 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Consider the above in connection with deliberative mini-publics convened to address ethical issues arising from the creation of the BC BioLibrary in the Canadian province of British Columbia in 2007, which conserves samples of human tissue for health research purposes (Burgess 2014;Longstaff and Burgess 2010;O'Doherty and Burgess 2013;O'Doherty and Hawkins 2010). Published work discussing these events frequently emphasizes representativeness and diversity in connection with recruitment.…”

Section: Diversity In Deliberative Mini-publicsmentioning

confidence: 99%

“…References to diversity often arise in connection with discussions of deliberative mini-publics (Burgess 2014;Longstaff and Burgess 2010;Goodin and Dryzek 2006). Given the link between representativeness and democratic legitimacy, it is natural to interpret Bdiversity^in a representative sense in this context.…”

Section: Diversity In Deliberative Mini-publicsmentioning

confidence: 99%

“…A number of models for deliberative mini-publics have been developed and used since the 1990s, including citizens' juries, consensus conferences, and deliberative polling (Goodin and Dryzek 2006). Deliberative mini-publics have also been used in connection with policy decisions related to science and technology, such as human tissue biobanking (Burgess 2014;Longstaff and Burgess 2010;O'Doherty and Burgess 2013;O'Doherty and Hawkins 2010). In this section, we illustrate how deliberative mini-publics raise coupled ethical-epistemic issues linked to the choice of diversity concept, making clarity and transparency about these concepts useful.…”

Section: Diversity In Deliberative Mini-publicsmentioning

confidence: 99%

See 2 more Smart Citations

Multiple diversity concepts and their ethical-epistemic implications

et al. 2018

View full text Add to dashboard Cite

A concept of diversity is an understanding of what makes a group diverse that may be applicable in a variety of contexts. We distinguish three diversity concepts, show that each can be found in discussions of diversity in science, and explain how they tend to be associated with distinct epistemic and ethical rationales. Yet philosophical literature on diversity among scientists has given little attention to distinct concepts of diversity. This is significant because the unappreciated existence of multiple diversity concepts can generate unclarity about the meaning of Bdiversity,^lead to problematic inferences from empirical research, and obscure complex ethical-epistemic questions about how to define diversity in specific cases. We illustrate some ethicalepistemic implications of our proposal by reference to an example of deliberative minipublics on human tissue biobanking.

show abstract

Section: Diversity In Deliberative Mini-publicsmentioning

confidence: 99%

Section: Diversity In Deliberative Mini-publicsmentioning

confidence: 99%

Section: Diversity In Deliberative Mini-publicsmentioning

confidence: 99%

See 1 more Smart Citation

Multiple diversity concepts and their ethical-epistemic implications

et al. 2018

View full text Add to dashboard Cite

show abstract

“…32 In the current study, a larger sample would have made deliberation more difficult to manage and, for all but the most important national issues, financially prohibitive. To achieve a sample that represented the diversity of BC, demographic stratifications were drawn from Statistics Canada and BC Statistics -Municipal Population Estimates.…”

Section: Recruitmentmentioning

confidence: 92%

Sequencing the salmon genome: A deliberative public engagement

O’Doherty

Burgess

Secko

2010

Life Sci Soc Policy

View full text Add to dashboard Cite

Salmon genomics is an emerging field that represents a convergence between socially important scientific innovation and a politically volatile topic of significant interest to the public. These factors provide a strong rationale for public input. This report describes such input from a public engagement event based on the principles of deliberative democracy. The event involved a random, demographically stratified sample of 25 British Columbians (Canada). While some participants opposed sequencing the salmon genome on principle, on the whole participants responded favourably, citing the value of increased knowledge of human impacts on salmon, potentially slowing or reversing this impact, and assisting sustainable management of salmon resources. Participants discussed many of the potential implications of the sequencing project and formulated recommendations pertaining to regulations, international treaties, public education and engagement. Overall, the project illustrates that the specific design and implementation of this event is capable of producing sound policy advice from the general public on genomic-related issues.

show abstract

“…Extensive literature exists on different modes of representation and their relevance to PIAs [16,17,18,19,20,21,22,23]. These discussions mostly refer to theoretical and normative notions regarding what kind of representation is appropriate for different means of public involvement and how representation can be achieved.…”

Section: Introductionmentioning

confidence: 99%

Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review

Lander

Hainz

Hirschberg

et al. 2016

Public Health Genomics

View full text Add to dashboard Cite

Background: Public involvement activities (PIAs) may contribute to the governance of ethically challenging biomedical research and innovation by informing, consulting with and engaging the public in developments and decision-making processes. For PIAs to capture a population's preferences (e.g. on issues in whole genome sequencing, biobanks or genome editing), a central methodological requirement is to involve a sufficiently representative subgroup of the general public. While the existing literature focusses on theoretical and normative aspects of ‘representation', this study assesses empirically how such considerations are implemented in practice. It evaluates how PIA reports describe representation objectives, the recruitment process and levels of representation achieved. Methods: PIA reports were included from a systematic literature search if they directly reported a PIA conducted in a relevant discipline such as genomics, biobanks, biotechnology or others. PIA reports were analyzed with thematic text analysis. The text analysis was guided by an assessment matrix based on PIA-specific guidelines and frameworks. Results: We included 46 relevant reports, most focusing on issues in genomics. 27 reports (59%) explicitly described representation objectives, though mostly without adjusting eligibility criteria and recruiting methods to the specific objective. 11 reports (24%) explicitly reported to have achieved the intended representation; the rest either reported failure or were silent on this issue. Conclusion: Representation of study samples in PIAs in biomedical research and innovation is currently not reported systematically. Improved reporting on representation would not only improve the validity and value of PIAs, but could also contribute to PIA results being used more often in relevant policy and decision-making processes.

show abstract

Recruiting for representation in public deliberation on the ethics of biobanks

Cited by 58 publications

References 17 publications

Multiple diversity concepts and their ethical-epistemic implications

Multiple diversity concepts and their ethical-epistemic implications

Sequencing the salmon genome: A deliberative public engagement

Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review

Contact Info

Product

Resources

About