Ethical Space for a Sensitive Research Topic - National Aboriginal ...

Ethical Space for a Sensitive Research Topic
study does not require an invasive procedure by a physician
or nurse practitioner. It is imperative that the academic and
community-based researchers collaborate to find ways to
support women to respond appropriately to a positive HPV
result, despite potential fear and stigma associated with HPV
and cervical cancer.
While the ethical space concept proved very beneficial for
the development of this research, operating the ethical space
for the research team within the structure of Western academia
was difficult. First, there is a lack of funding opportunities to
finance multi-site pre-research engagement meetings with
First Nations. Second, academic research institutions generally
do not have a system to “reward” researchers who engage in
these important, yet time- and resource-intensive activities.
Instead, these activities tend to be tacitly penalized as they take
time away from activities such as peer reviewed publications,
which are highly rewarded and also make researchers more
competitive among granting agencies.
LIMITATIONS
Engaging First Nations Peoples at the political level is
necessary prior to any community-based research. Yet, this
delayed the engagement of First Nations women for the
project until we had formal approval to do so. Despite this
necessary formality, the majority of stakeholders with whom
the research team worked did consist of First Nations women.
Only 10 communities in a relatively small geographical
area with reasonable connections to a major urban centre are
involved in the current study. Depending on the outcome of
future research, we hope to extend our investigation to more
geographically remote communities.
CONCLUSION
Our adoption of Willie Ermine’s theoretical concept of ethical
space has successfully assisted us in creating a meaningful and
productive dialogue on HPV research in collaboration with
10 First Nations communities in northwest Ontario. It has
resulted in the development of a PAR project in partnership
with these communities. We hope that by creating the ethical
space to negotiate HPV research in participating First Nations
communities with community leaders, health workers, and
community members, we will also increase the community
dialogue about STIs. This process may begin to reduce the
48 Journal de la santé autochtone, mars 2012
stigma and negative social implications for women who test
positive for HPV. In addition, it can lead to increased HPV
screening rates and lower cervical cancer rates among First
Nations women, resulting in healthier women and therefore
healthier communities.
ACKNOWLEDGEMENTS
This work was funded by the Northern Health Fund (to I.Z.).
We cordially thank the health centre staff and band council
members of the participating communities for continuous
knowledge exchange and support for our study design to
successfully conduct the planned larger study of cervical cancer
screening.
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