Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (Panel on Research Ethics, Government of Canada)
In 2001, Canada's three federal research agencies, CIHR, NSERC and SSHRC, jointly created the Interagency Advisory Panel on Research Ethics (PRE) as part of a collaborative effort to promote the ethical conduct of research involving human participants. The Panel develops, interprets and implements the Tri-Council Policy Statement:Ethical Conduct for Research Involving Humans (TCPS).
In 2010 the TCPS2 was published representing a comprehensive revision of the original TCPS. The second version changes included a consolidation of core principles; updated guidelines for clinical trials; human biological material and human genetics; and new guidance for multi-jurisditional research, research involving First Nations, Inuit and Meti peoples of Canada and qualitative research.
TCPS 2nd edition and tutorial
Interpretations of the TCPS
Research ethics links (Canadian, US and International organizations)
TCPS-2 Site and Tutorial
National Council on Ethics in Human Research (NCEHR)
The NCEHR is a non governmental organization established in 1989 and incorporated in 2003. NCEHR is sponsored by CIHR; Health Canada, Interagency Advisory Panel on Research Ethics and The Royal College of Physicians and Surgeons of Canada.
Site includes upcoming events, a list serv and web forum.
National Council on Ethics in Human Research
Canadian Association of Research Ethics Boards (CAREB)
The Canadian Association of Research Ethics Boards (CAREB) is a grassroots national membership organization intended to represent the interests of all Canadian Research Ethics Boards (REBs) and to reflect REB perspectives and concerns. CAREB services include networking opportunities and educational resources. Annual conferences provide attendees with updates on current issues of interest and promotes professional development. Annual membership is available but not required to access many of the resources available through the website.
Alberta Research Ethics Community Consensus Initiative (ARECCI)
The goals of ARECCI, as stated in 2003 are:
To develop a common understanding and broad consensus on issues of ethics screening and review.
To increase the clarity, consistency, transparency, and efficiency of ethics screening and review processes in Alberta.
To recommend an approach to answering the questions:
What kind of investigation or project is it?
What process of ethics review should be used for each kind?
What level of review is appropriate: full or expedited?
To develop guidelines and tools for Alberta's health researchers, managers, ethics boards and other stakeholders to implement the recommendations.
To influence health regional, provincial and federal policy related to ethics review processes.
The site includes background on the ARECCI project, Decision Support tools, relevant links, and interesting speaker presentations from their 2008 conference (Protecting People While Increasing Knowledge: Ethics in Health Research, Evaluation and Quality Improvement)
The screening tool, which is useful for considering ethical conduct of quality improvement projects and evaluations is available on-line:
Informative ARECCI presentation: ARECCI Introduction Presentation
Ethics at the Canadian Institutes of Health Research (CIHR)
CIHR Policies and Guidelines (governing research funded by CIHR)
Site includes ethics publications and resources on topics such as.:
Ethics of Research Involving Aboriginal Peoples
Institutional Conflict of Interest
Privacy and Confidentiality (including: Privacy Best Practices document (2005)
National Aboriginal Health Organization (NAHO)
Research Publications: http://www.naho.ca/english/pub_research.php
Considerations and Templates for Ethical Research Practices (2007)
OCAP: Ownership, Control, Access and Possession (2007)
Canadian Institutes of Health Research (CIHR)
Institute of Aboriginal People's Health (IAPH)
Guidelines for Health Research Involving Aboriginal People
Site provides background information about the document, its purpose and application and a summary of the articles.
The full document available as a .pdf at this site.
Freedom of Information and Protection of Privacy Act (FOIPPA) Province of British Columbia
Section 35 of the FOIPP Act covers the disclosure of personal information for research purposes. This section of the Act was updated in June 2009. (updated sections in italics)
Disclosure for research or statistical purposes
35 (1) A public body may disclose personal information or may cause personal information in its custody or under its control to be disclosed for a research purpose, including statistical research, only if
(a) the research purpose cannot reasonably be accomplished unless that information is provided in individually identifiable form or the research purpose has been approved by the commissioner,
(a.1) subject to subsection (2), the information is disclosed on condition that it not be used for the purpose of contacting a person to participate in the research,
(b) any data linking is not harmful to the individuals that information is about and the benefits to be derived from the data linking are clearly in the public interest,
(c) the head of the public body concerned has approved conditions relating to the following:
(i) security and confidentiality;
(ii) the removal or destruction of individual identifiers at the earliest reasonable time;
(iii) the prohibition of any subsequent use or disclosure of that information in individually identifiable form without the express authorization of that public body, and
(d) the person to whom that information is disclosed has signed an agreement to comply with the approved conditions, this Act and any of the public body's policies and procedures relating to the confidentiality of personal information.
(2) Subsection (1) (a.1) does not apply in respect of research in relation to health issues if the commissioner approves.
(a) the research purpose,
(b) the use of disclosed information for the purpose of contacting a person to participate in the research, and
(c) the manner in which contact is to be made, including the information to be made available to persons contacted.
The entire FOIPP Act is available online at: http://www.bclaws.ca