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In this Commentary, we argue that in line with the dramatic increase in the collection, storage, and curation of human genomic data for biomedical research, genomic data repositories and consortia have adopted governance frameworks to address the dual objectives of enabling wide access while protecting against possible harms. However, there are ongoing debates in the scientific community about the merits and limitations of different governance frameworks in achieving these twin aims; and indeed, best practices and points for consideration are notably absent when it comes to devising a governance framework for genomic databases. Based on our collective experience of devising and assessing governance frameworks, our Commentary identifies five key functions of “good governance” (or what makes “better governance”) and three areas where trade-offs should be considered when specifying policies within those functions. We apply these functions as a benchmark to describe, as an example, the governance frameworks of six large-scale international genomic projects.

This debate issue centers on the question of whether psychology should follow the methods and principles of the natural sciences. Answers to this question are often implicitly assumed but rarely explicitly debated among psychologists. This issue contains eight invited contributions by scholars whom we anticipated would have strong and divergent positions on the question. The articles present a broad range of perspectives, ranging from phenomenological psychology to cognitive neuroscience. They broadly line up with a "yes" or "no" answer to the question, four authors favoring a "yes" and four authors a "no" response, although nearly all authors advance more nuanced positions that challenge a simple classification. In this introduction, we first discuss the historical roots of the question and our motivation behind this specific formulation of it. Then we briefly summarize the contributions and place them in a broader context. [ABSTRACT FROM AUTHOR]

The practice of communicating research findings to participants has been identified as important in the research ethics literature, but little research has examined empirically how this occurs and what research participants' views are in this regard. We interviewed 21 adults with cystic fibrosis who had previously participated in research and 2 research coordinators at a cystic fibrosis clinic. We aimed to better understand research participants' views on receiving research results, types of findings they are interested in, how they would like to receive this information, and the impact this might have on future participation. Participants reported that they do not generally recall receiving study findings, though many reported that they would like to receive them. While some participants were not interested in receiving results, all participants felt that these results should be provided when desired by participants and believed that receiving study findings would support future participation. Participants felt that an accessible format, such as a lay summary, would be most helpful. This study supports calls to make study findings available to participants, though the format in which they are provided requires consideration. Participants rarely recalled receiving findings despite the clinic in which this study was conducted returning them regularly. Therefore, questions pertaining to the provision of study findings must focus less on whether to share the findings and more on how to share them with participants most effectively. The logistics of providing study findings may be challenging in some cases, but participant support for the practice highlights its importance.

Public deliberation is a form of dialogue that allows members of the public to provide input on a policy issue. Public deliberation processes invite participants to engage with each other respectfully, learn about the topic and each other's perspectives, and then work together toward solutions to an issue that are broadly acceptable. In this article, we develop a discursive psychological analysis of public deliberation on the topic of childhood vaccination. In particular, we focus on how descriptions of a parent who did not have her children vaccinated were developed iteratively by a small group of deliberants; how these descriptions came to be accepted as factual; and how these descriptions came to be used to support normative claims about childhood vaccination. Our main argument is that we can develop a deeper understanding of deliberation processes if we understand participants' statements to be rhetorically organised. This is achieved by examining how descriptions of events or people that are relevant to the final conclusions of the group are developed in the course of deliberation; how they come to be accepted as factual and accurate by the group; and how they then become instrumental in supporting a final consensus position. [ABSTRACT FROM AUTHOR]

Children and adolescents with Inflammatory Bowel Disease (IBD) face significant and unique challenges related to their condition. The aim of this study was to better understand some of these challenges, and to explore how Canadian youth respond to them. We interviewed 25 pediatric patients with IBD, ranging in age from 10–17, to find out about their illness experiences. Using a thematic analysis, we discerned three themes: challenges related to diagnosis, making sense of change, and navigating sociability. Taken together, they paint a picture of young people facing great uncertainty prior to diagnosis, pronounced changes to selfhood as they make lifestyle adjustments, and facing difficulties with the implications of reduced sociability because of their disease. We conclude by providing recommendations for the development of resources aimed at helping newly diagnosed pediatric patients navigate these issues. [ABSTRACT FROM AUTHOR]