Ethical Space for a Sensitive Research Topic: Engaging First Nations Women in the Development of Culturally Safe Human Papillomavirus Screening
By Ingeborg Zehbe1,2,3*,Marion Maar4*, Amy J. Nahwegahbow5, Kayla SM Berst1,2, Janine Pintar1,2
First Nations women are widely under-screened for HPV infection and cervical cancer. This may be due to issues around screening for a sexually transmitted infection. These issues may include experiences of stigmatization, feelings of shame, and fear of lack of privacy when results are reported in very small communities. Any HPV research in First Nations communities must be done in a sensitive, respectful, and culturally appropriate way, preferably involving community members themselves. In studying ways to promote HPV and cervical cancer screening in First Nations communities in Ontario, the authors of this paper used a participatory action research (PAR) approach, which involves collaboration between the research team and the people the research is supposed to benefit. The authors also used First Nations scholar Willie Ermine’s concept of ethical space—where groups with separate worldviews come together to recognize differences and negotiate mutual understanding—in their approach to working with the communities. Through a series of engagements with community members to introduce, develop, and refine the proposed research, the authors were able to create a study that was both scientifically sound and accepted by the community. A pilot study was completed in one First Nations community with a larger, randomized trial scheduled to begin in ten additional communities involving up to 1,000 women. Although the PAR/ethical space approach may be more time- and resource-intensive, involving local women, health care providers, leaders, and other community members helps ensure acceptance by and benefit to the First Nations communities involved in research.
1Probe Development and Biomarker Exploration, Thunder Bay Regional Research Institute, Thunder Bay, Ontario, Canada
2 Biology Department, Lakehead University, Thunder Bay, Ontario, Canada
3Health Sciences Division,Northern Ontario School of Medicine, Thunder Bay, East Campus, Ontario, Canada
4Human Sciences Division,Northern Ontario School of Medicine, Sudbury, West-Campus, Ontario, Canada
5School of Public Health,University of Waterloo, Waterloo, Ontario, Canada