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A working group from across Canada comprised of clinician and basic scientists, epidemiologists, ethicists, Health Canada regulatory authorities and representatives of major funding agencies (Canadian Institutes of Health Research and the Crohn's and Colitis Foundation of Canada) met to review the current experience with fecal microbial therapy and to(More)
A genetic counselor is often faced with the difficult task of conveying a set of complex and highly abstract factors associated with the client's risk of developing a familial disorder. The client is faced with the even more difficult task of making significant health-related decisions about an event which may or may not eventuate. Although there is a large(More)
Biobanks are increasingly hailed as powerful tools to advance health research. The social and ethical challenges associated with the implementation and operation of biobanks are equally well-documented. One of the proposed solutions to these challenges involves trading off a reduction in the specificity of informed consent protocols with an increased(More)
In April 2007, a research team led by M. Burgess conducted a public engagement, the BC Biobank Deliberation, focused on the issue of biobanks. The project was motivated by an observation that current policy approaches to social and ethical issues surrounding biobanks manifest certain democratic deficits. The public engagement was informed by political(More)
This paper reports on the design, implementation, and results of a structured public deliberation on human tissue biobanking conducted in Vancouver, Canada, in 2009. This study builds on previous work on the use of deliberative democratic principles and methods to engage publics on the social and ethical implications of human tissue biobanking. In a(More)
In anticipation of increasing interest in public engagement, this article seeks to expand the current discussion in the neuroethics literature concerning what public engagement on issues related to neuroscience might entail and how they could be envisioned. It notes that the small amount of available neuroethics literature related to public engagement has(More)
We begin with the premise that human tissue biobanking is associated with ethical ambiguities and regulatory uncertainty, and that public engagement is at least one important element in addressing such challenges. One is then confronted with how to achieve public engagement that is both meaningful and effective. In particular, how can public engagement on(More)
This paper investigates to what degree patients can be said to effectively manifest agency during the process of genetic counseling for cancer risk. Rather than talk about agency on an abstract level, the discussion is grounded in examples from actual genetic counseling sessions. Past research in this area recognises three dimensions along which clients'(More)
BACKGROUND While the social, ethical, and legal implications of biobanking and large scale data sharing are already complicated enough, they may be further compounded by research on the human microbiome. DISCUSSION The human microbiome is the entire complement of microorganisms that exists in and on every human body. Currently most biobanks focus(More)