Phyllis Pettit Nassi works in Prevention & Outreach as Manager of Special Populations and Native American Outreach at Huntsman Cancer Institute in Salt Lake City, Utah. As a cancer advocate for underserved communities, Phyllis uses outreach to raise awareness of cancer, cancer research, and clinical trials within poor communities. Her efforts cross a wide spectrum, from providing patients and their families with easy-to-understand educational materials to bringing the underserved patients' perspective to the realm of cancer research by sharing their collective issues with researchers and legislators. In the April 2011 issue of Office of Cancer Genomics e-News, Phyllis contributed her perspective on a studyOpens in a New Tab by TARGET pediatric researchers which uncovered a link between Native American ancestry and increased risk of relapse of childhood acute lymphoblastic leukemia. Her writing is a reflection of her experience working as the Manager of Special Populations and Native American Outreach and serving on various committees, but does not reflect the views of the Huntsman Cancer Institute.
In his commentaryOpens in a New Tab in Nature (2004) on the "Human Genome Variations and 'Race:' The State of Science" meeting, Dr. Francis S. Collins, director of the National Institutes of Health, poses a number of important questions.
Included among them are:
- "What does the current body of scientific information say about the connections among race, ethnicity, genetics and health?"
- "…will [genetics] explain a substantial proportion of health disparities for most common diseases…?"
- "What additional research is needed?"
Seven years later, I realize that we remain far from clear-cut answers to these questions, particularly as I ponder how they relate to health disparities in cancer research. I believe one key reason why we are without answers is because unfortunately, most clinical trials are conducted in patient populations that don't reflect the full range of ethnic and socioeconomic backgrounds.
Including underserved communities in cancer genomics research is oftentimes challenging, but it is most certainly possible. In my experience with Native American outreach, the willingness to take the time to engage tribal nations -- or any underserved population for that matter — as true research partners is invaluable. We must invite these populations to be at the table from the very beginning and continuously provide them with services throughout.
Many underserved patients lack the exposure and education needed to understand basic biological concepts. During my time working with Native American cancer patients and their extended network of family and health care professionals, I found that few know what a gene is, let alone a genome. Understandable information about all major aspects of the cancer research project is critical to educating these underserved populations. With this knowledge, they are empowered to make informed choices about participation in research and treatment options. In order for minority populations to reap the desired the therapeutic benefits of advances in genomics and pharmacogenomics cancer research, educational programs must be targeted to reach them. They desire the beneficial outcomes of new research findings after learning of them but cannot ask for something they aren't aware of.
Lastly, we must establish a relationship of trust by encouraging researchers to focus on how research findings may impact cultural and societal aspects of tribal nations or other underserved populations. This trust benefits the underserved and ultimately the research, which will in turn, eventually lead us to the answers we have been awaiting.