What's Involved with Wanting to Be Involved? Comparing Expectations for Public Engagement in Health Policy across Research and Care Contexts.

OBJECTIVES: We explored public preferences for involvement in health policy decisions, across the contexts of medical research and healthcare. APPROACH: We e-surveyed a sample of Canadians, categorizing respondents by preferences for decision control: (1) more authority; (2) more input; (3) status quo. Two generalized ordered logistic regressions assessed influences on preferences. RESULTS: The participation rate was 94%; 1,102 completed responses met quality criteria. The dominant preference was for more input (average = 52.0%), followed by status quo (average = 24.9%) and more authority (average = 21.1%), though preferences for more control were higher in healthcare (57.2%) than medical research (46.8%). Preferences for greater control were associated with constructs related to reduced trust in healthcare systems. CONCLUSION: The public expects health policy to account for public views, but not base decisions primarily on these views. More involvement was expected in healthcare than medical research policy. As opportunities for public involvement in health research grow, we anticipate increased desired involvement.

Using Newborn Screening Bloodspots for Research: Public Preferences for Policy Options.

OBJECTIVES: Retaining residual newborn screening (NBS) bloodspots for medical research remains contentious. To inform this debate, we sought to understand public preferences for, and reasons for preferring, alternative policy options. METHODS: We assessed preferences among 4 policy options for research use of residual bloodspots through a bilingual national Internet survey of a representative sample of Canadians. Fifty percent of respondents were randomly assigned to select reasons supporting these preferences. Understanding of and attitudes toward screening and research concepts, and demographics were assessed. RESULTS: Of 1102 respondents (94% participation rate; 47% completion rate), the overall preference among policy options was ask permission (67%); this option was also the most acceptable choice (80%). Assume permission was acceptable to 46%, no permission required was acceptable to 29%, and no research allowed was acceptable to 26%. The acceptability of the ask permission option was reduced among participants assigned to the reasoning exercise (84% vs 76%; P = .004). Compared with assume/no permission required, ordered logistic regression showed a significant reduction in preference for the ask permission option with greater understanding of concepts (odds ratio, 0.87; P < .001), greater confidence in science (odds ratio, 0.16; P < .001), and a perceived responsibility to contribute to research (odds ratio, 0.39; P < .001). CONCLUSIONS: Surveyed Canadians prefer that explicit permission is sought for storage and research use of NBS bloodspots. This preference was diminished when reasons supporting and opposing routine storage, and other policy options, were presented. Findings warrant consideration as NBS communities strategize to respond to shifting legislative contexts.

Citizen expectations of 'academic entrepreneurship' in health research: public science, practical benefit.

BACKGROUND: Responsiveness to citizens as users of technological innovation helps motivate translational research and commercial engagement among academics. Yet, retaining citizen trust and support for research encourages caution in pursuit of commercial science. OBJECTIVES: We explore citizen expectations of the specifically academic nature of commercial science [i.e. academic entrepreneurship (AE)] and the influence of conflict of interest concerns, hopes about practical benefits and general beliefs. DESIGN, SETTING AND PARTICIPANTS: We conducted a cross-sectional national opinion survey of 1002 Canadians online in 2010. RESULTS: Approval of AE was moderate (mean 3.2/5, SD 0.84), but varied by entrepreneurial activity. Concern about conflict of interests (COI) was moderate (mean 2.9/5, SD 0.86) and varied by type of concern. An ordinary least-squares regression showed that expectations of practical benefits informed support for AE, specifically that academic-industry collaboration can better address real-world problems; conflict of interest concerns were insignificant. CONCLUSIONS: These findings suggest that citizens support AE for its potential to produce practical benefits, but enthusiasm varies and is reduced for activities that may prioritize private over public interests. Further, support exists despite concern about COI, perhaps due to trust in the academic research context. For user engagement in research priority setting, these findings suggest the need to attend to the commercial nature of translational science. For research policy, they suggest the need for governance arrangements for responsible innovation, which can sustain public trust in academic research, and realize the practical benefits that inform public support for AE.

Public views on participating in newborn screening using genome sequencing.

Growing discussion on the use of whole-genome or exome sequencing (WG/ES) in newborn screening (NBS) has raised concerns regarding the generation of incidental information on millions of infants annually. It is unknown whether integrating WG/ES would alter public expectations regarding participation in universal NBS. We assessed public willingness to participate in NBS using WG/ES compared with current NBS. Our secondary objective was to assess the public's beliefs regarding a parental responsibility to participate in WG/ES-based NBS compared with current NBS. We examined self-reported attitudes regarding willingness to participate in NBS using a cross-sectional national survey of Canadian residents recruited through an internet panel, reflective of the Canadian population by age, gender and region. Our results showed that fewer respondents would be willing to participate in NBS using WG/ES compared with NBS using current technologies (80 vs 94%, P<0.001), or perceived a parental responsibility to participate in WG/ES-based NBS vs current NBS (30 vs 48%, P<0.001). Our findings suggest that integrating WG/ES into NBS might reduce participation, and challenge the moral authority that NBS programmes rely upon to ensure population benefits. These findings point to the need for caution in the untargeted use of WG/ES in public health contexts.