Literature DB >> 12141216

Canadian governance of health research involving human subjects: is anybody minding the store?

M McDonald1.   

Abstract

From an ethical perspective, good governance involves the translation of collective moral intentions into effective and accountable institutional actions. With respect to the use of human subjects in Canadian health research, I contend that there have been many good intentions but very little in the way of appropriate governance arrangements. Hence, the question, "who minds the store?" is especially acute with respect to the protection of vulnerable individuals and groups that are typically recruited as subjects for health research in Canada. Beyond diagnosing failures in governance and their causes, I offer suggestions for significant reforms, including evidence-based ethics assessment, independent oversight, and greater participation of research subjects in governance. I will close with some more general reflections on ethics, law, and governance.

Entities:  

Keywords:  Legal Approach

Mesh:

Year:  2001        PMID: 12141216

Source DB:  PubMed          Journal:  Health Law J        ISSN: 1192-8336


  11 in total

1.  Better governance in academic health sciences centres: moving beyond the Olivieri/Apotex Affair in Toronto.

Authors:  L E Ferris; P A Singer; C D Naylor
Journal:  J Med Ethics       Date:  2004-02       Impact factor: 2.903

2.  Ethical reproducibility: towards transparent reporting in biomedical research.

Authors:  James A Anderson; Marleen Eijkholt; Judy Illes
Journal:  Nat Methods       Date:  2013-09       Impact factor: 28.547

Review 3.  The "Vulnerability" of Psychiatric Research Participants: Why This Research Ethics Concept Needs to Be Revisited.

Authors:  Dearbhail Bracken-Roche; Emily Bell; Eric Racine
Journal:  Can J Psychiatry       Date:  2016-04-05       Impact factor: 4.356

4.  Instrumentalist analyses of the functions of ethics concept-principles: a proposal for synergetic empirical and conceptual enrichment.

Authors:  Eric Racine; M Ariel Cascio; Marjorie Montreuil; Aline Bogossian
Journal:  Theor Med Bioeth       Date:  2019-08

5.  Informed consent for MRI and fMRI research: analysis of a sample of Canadian consent documents.

Authors:  Nicole Palmour; William Affleck; Emily Bell; Constance Deslauriers; Bruce Pike; Julien Doyon; Eric Racine
Journal:  BMC Med Ethics       Date:  2011-01-14       Impact factor: 2.652

6.  A biobank management model applicable to biomedical research.

Authors:  Christiane Auray-Blais; Johane Patenaude
Journal:  BMC Med Ethics       Date:  2006-04-06       Impact factor: 2.652

7.  Monitoring and oversight in critical care research.

Authors:  James V Lavery; Marleen L P Van Laethem; Arthur S Slutsky
Journal:  Crit Care       Date:  2004-09-28       Impact factor: 9.097

8.  Policy recommendations for addressing privacy challenges associated with cell-based research and interventions.

Authors:  Ubaka Ogbogu; Sarah Burningham; Adam Ollenberger; Kathryn Calder; Li Du; Khaled El Emam; Robyn Hyde-Lay; Rosario Isasi; Yann Joly; Ian Kerr; Bradley Malin; Michael McDonald; Steven Penney; Gayle Piat; Denis-Claude Roy; Jeremy Sugarman; Suzanne Vercauteren; Griet Verhenneman; Lori West; Timothy Caulfield
Journal:  BMC Med Ethics       Date:  2014-02-03       Impact factor: 2.652

9.  Exploring the experiences of substitute decision-makers with an exception to consent in a paediatric resuscitation randomised controlled trial: study protocol for a qualitative research study.

Authors:  Melissa J Parker; Sonya de Laat; Lisa Schwartz
Journal:  BMJ Open       Date:  2016-09-13       Impact factor: 2.692

10.  Perspectives of Saskatchewan researchers and community members on HIV-1 strains circulating in Saskatchewan.

Authors:  Linda Chelico; Alexandra King; Jann Ticknor; Michael McDonald; Ron Rosenes; Jason Mercredi; Jack Saddleback; Geri Bailey; Malcolm King
Journal:  AIDS       Date:  2020-11-01       Impact factor: 4.632

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