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Glass Houses: The Power Of Money In Bioethics Research, Jocelyn Downie

Articles, Book Chapters, & Popular Press

In this paper I explore the power of money in bioethics research and ask whether, while casting stones regarding financial conflicts of interest in health research, bioethics researchers are in fact living in glass houses. I first review the need for money in bioethics research, the sources of money, and key features of the money (specifically, the amount of money involved and the fact that the money often is embedded, encumbered, and required to be matched). Next, I explore a range of possible objectives for the money transfer. I then examine the effects of this transfer and raise some questions …

Who's Minding The Shop? The Role Of Canadian Research Ethics Boards In The Creation And Uses Of Registries And Biobanks, Elaine Gibson, Kevin Brazil, Michael Coughlin, Claudia Emerson, François Fournier, Lisa Schwartz, Karen Szala-Meneok, Karen Weisbaum, Donald Willison

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Background: The amount of research utilizing health information has increased dramatically over the last ten years. Many institutions have extensive biobank holdings collected over a number of years for clinical and teaching purposes, but are uncertain as to the proper circumstances in which to permit research uses of these samples. Research Ethics Boards (REBs) in Canada and elsewhere in the world are grappling with these issues, but lack clear guidance regarding their role in the creation of and access to registries and biobanks.

Methods: Chairs of 34 REBS and/or REB Administrators affiliated with Faculties of Medicine in Canadian universities were …

Industry And The Academy: Conflicts Of Interest In Contemporary Health Research, Jocelyn Downie

Articles, Book Chapters, & Popular Press

The case of Dr. Nancy Olivieri, the Hospital for Sick Children (HSC), the University of Toronto, and Apotex Inc. (hereinafter the "Olivieri case") is critically important to an understanding of the issues central to contemporary health research and the safety of research participants. First, the case illustrates the huge stakes in such research – not only billions of dollars, but the health of Canadians. Second, the case played out at a crucial time in the history of the regulation of health research. Like other recent high-profile cases, it challenged the ways in which research is governed at the local and …

Information/Consent/Authorization For Minors' Participation In Research, Jocelyn Downie

Articles, Book Chapters, & Popular Press

Following the workshop described in the previous article "Children and Decision-Making in Health Research," I decided to "operationalize" the approach taken to the issue of minors and consent/authorization. What follows is a proposed set of instructions for investigators that could be provided by REBs to investigators to facilitate the process of applying for ethical approval for research involving minors and to ensure respect for minors who are participating in research.