RESEARCH FROM THE PARTICIPANTíS PERSPECTIVE
A group of Toronto health researchers experiencing
difficulty recruiting Portuguese Canadian participants
conducted a qualitative study to investigate research
involvement from the participants’ perspectives.
Paula Barata and her colleagues conducted focus groups
in which they introduced a mildly invasive fictional
health study and used role play between the focus group
moderators to explore Portuguese Canadian and Caribbean
Canadian participants’ concerns about recruitment
and written consent.
The researchers discovered that building rapport throughout the research process
(e.g., from recruitment to data collection to dissemination) is necessary to
overcome general misconceptions and mistrust of research. Both immigrant
groups identified a general lack of information regarding the research and genuinely
wanted to receive more. Having clearly written participant information letters
(translated when necessary) was appreciated and praised by participants. Both
groups wanted and appreciated an opportunity to not only ask questions but found
it useful to do so in group contexts. The authors advised that while similarities
were found between the groups, it was important to further explore subtle cultural
differences. This study underscored the importance of core ethical themes such
as justice and inclusiveness (Tri-Council Policy Statement – pg. i 6) by
ensuring that individuals and groups are not discriminated against or excluded
from benefiting from advances in research.
Reference: Barata PC,
Gucciardi E, Ahmad F, Stewart DE (2006) Cross-cultural
perspectives on research participation and informed
consent. SOCIAL SCIENCE AND MEDICINE
UNPACKING THE CIHR ABORIGINAL GUIDELINES
The Aboriginal Guidelines, designed in conjunction with
the Canadian Institutes of Health Research (CIHR)
and its Institute of Aboriginal Peoples' Health, were
created to assist CIHR funded health researchers conducting
studies with urban or rural Aboriginal people. “The
Guidelines will assist in developing research partnerships
that will facilitate and encourage mutually beneficial
and culturally competent research”. http://www.cihr-irsc.gc.ca/e/29134.html
This brief document begins with background on and the
rationale for the guidelines as well as the key ethical
principles on Aboriginal health research. The process
and procedures section, presented as an algorithm, walks
the researcher through the research process from the
concept development phase to ethics submission and dissemination
of findings. A very useful feature of the guidelines
is the sample research agreement found in the appendix.
The research agreement will be a key document particularly
when conducting community-based participatory research
(CBPR). It is expected that these guidelines will be
referenced in the upcoming second edition of the Tri-Council
JOINT CENTRE FOR BIOETHICS WEBCASTS
Are you interested in attending the Joint Centre for
Bioethics’s presentations but can’t manage
the time for a trip to Toronto? You and your students
can watch simultaneous web cast presentations as a remote
participant and have the opportunity to send in your
questions to the moderator. Register by going to
the ePresence server at http://epresence.ehealthinnovation.org/epresence.
You will need to obtain a login and password. Then mark
the web cast on your calendars and log on 5 minutes before
the scheduled broadcast.
Archived Presentations for use in teaching:
More than 15 previous web cast presentations have been
archived and are available for viewing at any time. Presentations
address both clinical ethics and research ethics and
include “Critical Issues in Community-Based Participatory
Research Ethics,” and “Challenges for Research
During a Public Health Emergency: Learning from SARS”.
This term’s series ended in June and resumes in
TIP: Links to these web casts can be put on course
syllabi to add variety to standard print sources on research
NEED HELP WITH ETHICS?
Are you are preparing an application for human ethics
review and have questions about the process? Help is
a phone call or email away.
For assistance with submissions to the McMaster
Research Ethics Board (MREB) related to non-medical
Karen Szala-Meneok or Michael Wilson (See the “REB
CONTACTS” column in this newsletter for their contact
information). The monthly MREB monthly ethics drop-in
consultations will begin again in August, but you can
contact the ethics office at any time to ask for advice
or look over a draft of your application.
For assistance with submissions to the HHS/FHS
REB and /or SJHH REB please contact the research ethics officer,
Alison van Nie or the REB Coordinators, Deborah Mazzetti
(HHS/FHS), or Leigh Mahan (SJHH) who will be happy to
assist you with the process and answer your questions
(See the “REB CONTACTS” column in this newsletter
for their contact information).
COURSE APPLICATIONS FOR THE FALL
Will you be teaching a course (non-health science) that requires students to conduct a research project with humans to develop their research skills? Projects may be carried out by individual students, small groups or as a single class project. If you are designing this type of research course, consult the following link to the MREB Website to find course application forms and guidelines. Course approvals are valid for three years before having to resubmit.
Renewal of Course-based Applications: If you received
ethics clearance more than three years ago, you are required
to submit a new application and supporting materials.
Questions about submitting course applications to the
MREB can be directed to Michael Wilson (X23142) or Karen
For Health Sciences courses: please contact Alison van
Nie (X 22057) firstname.lastname@example.org for specific requirements.