Alternatives to project-specific consent for access to personal information for health research: Insights from a public dialogue

<p>Abstract</p> <p>Background</p> <p>The role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public dialogues.</p> <p>Methods</p> <p>We conducted seven day-long public dialogues, involving 98 participants across Canada. Immediately before and after each dialogue, participants completed a fixed-response questionnaire rating individuals' support for 3 approaches to consent in the abstract and their consent choices for 5 health research scenarios using personal information. They also rated how confident different safeguards made them feel that their information was being used responsibly.</p> <p>Results</p> <p>Broad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use. Despite lively and constructive dialogues, and considerable shifting in opinion at the individual level, at the end of the day, there was no substantive aggregate movement in opinion. Personal controls were among the most commonly cited approaches to improving people's confidence in the responsible use of their information for research.</p> <p>Conclusion</p> <p>Because no one approach to consent satisfied even a simple majority of dialogue participants and the importance placed on personal controls, a mechanism should be developed for documenting consent choice for different types of research, including ways for individuals to check who has accessed their medical record for purposes other than clinical care. This could be done, for example, through a web-based patient portal to their electronic health record. Researchers and policy makers should continue to engage the public to promote greater public understanding of the research process and to look for feasible alternatives to existing approaches to project-specific consent for observational research.</p

Appeals to evidence for the resolution of wicked problems: the origins and mechanisms of evidentiary bias

Wicked policy problems are often said to be characterized by their ‘intractability’, whereby appeals to evidence are unable to provide policy resolution. Advocates for ‘Evidence Based Policy’ (EBP) often lament these situations as representing the misuse of evidence for strategic ends, while critical policy studies authors counter that policy decisions are fundamentally about competing values, with the (blind) embrace of technical evidence depoliticizing political decisions. This paper aims to help resolve these conflicts and, in doing so, consider how to address this particular feature of problem wickedness. Specifically the paper delineates two forms of evidentiary bias that drive intractability, each of which is reflected by contrasting positions in the EBP debates: ‘technical bias’ - referring to invalid uses of evidence; and ‘issue bias’ - referring to how pieces of evidence direct policy agendas to particular concerns. Drawing on the fields of policy studies and cognitive psychology, the paper explores the ways in which competing interests and values manifest in these forms of bias, and shape evidence utilization through different mechanisms. The paper presents a conceptual framework reflecting on how the nature of policy problems in terms of their complexity, contestation, and polarization can help identify the potential origins and mechanisms of evidentiary bias leading to intractability in some wicked policy debates. The discussion reflects on whether being better informed about such mechanisms permit future work that may lead to strategies to mitigate or overcome such intractability in the future

The “over-educated” Kibbutz: Shifting relations between social reproduction and individual development on the Kibbutz

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/42935/1/10780_2005_Article_BF01201513.pd

The return of the fifties: Trends in college students' values between 1952 and 1984

Five identical surveys were carried out in 1952, 1968–1969, 1974, 1979, and 1984 among undergraduate men at Dartmouth College and the University of Michigan to measure value trends. In most value domains the trends are U-shaped, showing that the trends from the fifties to the sixties and seventies have reversed, and attitudes in 1984 were either similar to the fifties or moving in that direction. The domains include traditional religion, career choice, faith in government and the military, advocacy of social constraints on deviant social groups, attitudes about free enterprise, government and economics, sexual morality, marijuana use, and personal moral obligations. Two attitude areas do not show a return of the fifties: (1) other-direction was high in 1952, then dropped to the sixties and did not rise; (2) the level of politicization rose greatly from 1952 to the sixties, then dropped again only slightly.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/45659/1/11206_2005_Article_BF01106623.pd

Heuristics for practitioners of policy design: Rules-of-thumb for structuring unstructured problems

This article is an attempt to bridge the divide between academics and practitioners. Informed by both design theory and the reality of policy work, its focus is on ‘problems’. From a practitioners’ perspective, policy design is both an intellectual and political process, an inevitable oscillation between ‘puzzling’ and ‘powering’, in which ‘messy’ or unstructured problems are re-structured from problems as webs of ‘undesirable situations’ to problems as specific, time-and-space bound ‘opportunities for improve- ment’. This requires a questioning habitus in practitioners of policy design. Using a socio-cognitive theory of problem processing, this paper shows how policy design is an iterative process of problem sensing, problem categorization, problem decompos- ition and problem definition. For each of these stages, appropriate rules-of-thumb for questioning and answering can be suggested that induce thought habits and styles for responsive and solid policy designs