As of March 2015, I wrapped up nearly 5 years of work as a staff researcher with the Center for Genomics and Healthcare Equality, Dr. Wylie Burke, PI, at the University of Washington (CGHE), in the Department of Bioethics and Humanities. These projects all involve engaging with stakeholders who are impacted by the research, to help us ask the appropriate questions, consider all relevant factors, and ensure results and reports are respectful of those involved, especially of those whose voices are often left out of research. They also include interdisciplinary communication, cultivating mutual appreciation of research methods, validity of data and multiple ways of knowing. I have learned to communicate the goals and value of qualitative data to quantitative researchers, to support collaborations that lead to better science and new insights.
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Research Partners, Not Subjects: Engaging Indigenous Peoples in Genetics
I presented in an invited session at the American Society of Human Genetics annual conference, in Baltimore, October 2015. My fellow panelists and I discussed the ethical engagement of American Indian, Alaska Native, Native Hawaiian communities in genetic research, and shifting norms toward community-driven research. Our abstract and individual presentation titles can be found by scrolling all the way toward the bottom of this page. Ed Yong covered our presentation for The Atlantic. The story can be found here. |
Fabulous colleagues and fellow panelists (left to right):
Keolu Fox: @keolufox
Krystal Tsosie: @kstsosie, web profile,
Joe Yracheta: currently working with
Missouri Breaks Research
(Photo credit, Jason Torres)
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Renal Disease Determinants Working Group: a year-long case study, taking an interdisciplinary approach, to answer the question, "What, if anything, can genomics do to reduce health disparities?"
Our meeting notes and recordings can be found here.
We are currently in the process of drafting publications from this effort, including an ethical analysis of genomics in health and healthcare disparities. Stay tuned!
Our meeting notes and recordings can be found here.
We are currently in the process of drafting publications from this effort, including an ethical analysis of genomics in health and healthcare disparities. Stay tuned!
Data sharing discourse analysis project: a look at various stakeholder perspectives around the sharing of genetic research data. I was a primary researcher on a team of three, lead by Dr. Helene Starks and with Lorelei Walker. We presented our study was presented at the Ethical, Legal, Social Implications (ELSI) Congress in 2011, and as background information for the Exploring Pathways to Trust (EP2T) meeting in 2012. Purposes of this project were to:
1. Summarize benefits and concerns about genetic data sharing from different stakeholder perspectives
2. Identify common ground and language used across stakeholder groups
3. Facilitate discussion of the feasibility & acceptability of proposed solutions
Master's Thesis: "Lessons from the River: Identifying Factors that Influence Comprehension of Genetics Research in a Yup’ik Eskimo Community.”
During my past graduate life, I completed a Master's in Biology at the University of Alaska Fairbanks in May, 2009. My thesis project is entitled, "Lessons from the river: Identifying factors that influence the comprehension of genetic research in a Yup'ik Eskimo community," and looks at how local Yup'ik community members understand genetics and genetic research. I owe a great deal of gratitude to the Center for Alaska Native Health Research (CANHR), whose existing and on-going partnership with communities in the Yukon-Kuskokwim Delta of Alaska, and community-based participatory research approach both committed me to the idea that "responsible research means staying for tea," and made my project possible. Beginning my research training within the context of a community-academic partnership cemented for me the necessity of equitable partnerships, humility in our work,and engaging with communities as experts in their own experience. This immersion set me up to contribute in my staff and student positions within the University of Washington, gave me the foundation to conduct my dissertation studies, and to teach a new generation of community-engaged leaders.
During my past graduate life, I completed a Master's in Biology at the University of Alaska Fairbanks in May, 2009. My thesis project is entitled, "Lessons from the river: Identifying factors that influence the comprehension of genetic research in a Yup'ik Eskimo community," and looks at how local Yup'ik community members understand genetics and genetic research. I owe a great deal of gratitude to the Center for Alaska Native Health Research (CANHR), whose existing and on-going partnership with communities in the Yukon-Kuskokwim Delta of Alaska, and community-based participatory research approach both committed me to the idea that "responsible research means staying for tea," and made my project possible. Beginning my research training within the context of a community-academic partnership cemented for me the necessity of equitable partnerships, humility in our work,and engaging with communities as experts in their own experience. This immersion set me up to contribute in my staff and student positions within the University of Washington, gave me the foundation to conduct my dissertation studies, and to teach a new generation of community-engaged leaders.