D4I Steering Committee

Much of my training centered on topics of importance to American Indian/Alaskan Native communities and has led to much of my service extending out towards empowering Indigenous communities. During my training in host-pathogen interactions of human infectious agents, I was asked to participate in studies of the Strong Heart Study by Dr. Lyle Best. Through my postdoc we were able to begin to investigate the relationship between particular alleles of various immune-related genes and different infectious agents. This work has expanded as I have established my own laboratory to areas of microbial relationships with Indigenous peoples. Through interactions with individuals at the Missouri Breaks Industries Research Inc., (MBIRI), we expanded our role in microbial interactions by centering investigations of the microbiome and its association with health of individuals on the Cheyenne River reservation, where MBIRI is located. Work in the microbiome is occurring with Dr. Michael Snyder at Stanford University and the Native BioData Consortium, which is led by Joseph Yracheta. These studies use a combination of microbiological approaches and large dataset analysis. Our group was built with the expectation of using both wet and dry lab approaches to answer biological questions. As such, we helped build out informatics structure in the Dept. of Microbiology and the College of Arts and Sciences at Ohio State. This juxtaposition alongside data as an integral component of our mental frameworks in science spurred interests in expanding aspects of training in data sciences, especially as it involves Indigenous populations. To this aim, I co founded a training program aiming to train Indigenous students in information science and data analytics called Indigidata (indigidata.org). This program was co-founded and is co-directed with Krystal Tsosie, who is part of this research team as well. This project sprang out of another initiative I currently co-direct, the Summer internship for INdigenous peoples in Genomics (SING) workshop. SING has been an ongoing program for over ten years and has had a strong impact in enhancing the ethics of how researchers approach genetic studies with Tribal nations in the United States. Participants in these projects have gone on to obtain research faculty, teaching faculty, and careers in industry and health. Many of our previous participants include undergraduates from Tribal Colleges and Universities (TCUs) due, in part, to the specific focus of Indigidata on training TCU students and close connections through the 12 regional TCUs in the Dakotas and Northwest Indian College.

I am well qualified to lead the OSU team of this project in terms of leadership and project management for the administrative, data sharing, access provision, regular weekly progress reporting, and evaluation functions; also to contribute to the repository architecture. I will leverage experience that I have accrued during my tenure at Ohio State University leading biostatistics/bioinformatics cores for large multi-site studies. In the roles of Vice Chair of Biomedical Informatics department (BMI) and Director of the Center for Biostatistics, I mentor junior faculty and oversee more than 30 biostatisticians, (bio)informaticians, data analysts, project managers and research scientists that provide support to the five health sciences colleges at The Ohio State University. I also serve as the director of the Comprehensive Cancer Center Biostatistics Shared Resource (BSR) in addition to being core director of one P01 (Oncolytic Virotherapy of Malignant Gliomas CA163205), the site PI of the PCORI national PaTH clinical research network; the director of Core C-Data Management and Analysis of the Center for Serological Testing to Improve Outcomes from Pandemic COVID- 19 (STOP-COVID), Co-I on the PE-CGS Coordinating Center (MPI: Bridges), and leader of the Biostatistics team of the NIDA funded study “Optimizing HEALing in Ohio” (budget ~$66M)- a cluster randomized multi-site evidence based study to test the efficacy of evidence-based prevention and treatment interventions designed to reduce opioid overdose fatalities. I have led five different Biostatistics and Bioinformatics Cores of large multi-site program projects (four P01s, one SPORE) and have more than twenty years of experience with more than 150 publications in collaborative and analytical methods research. Thus, I interact with a wide variety of laboratory and clinical scientists throughout the College of Medicine at OSU and beyond. Due to my locally and nationally scientific relationships, I have been able to increase the Center for Biostatistics’ budget to $2.3M in extramural annual funding with an impact of $10M annual extramural funding. My areas of expertise include statistical genetics, design of multi-site clinical studies and multi-site cluster randomized studies.

As an Assistant Researcher in the Genomics Institute UCSC I work on the forefront of genomic sequencing technologies and develop Indigenous genomic data technical infrastructures, policies and frameworks for engagement. I have a broad background in the development of community centered informatics approaches. My formal PhD training as a bioinformatician in the Department of Biotechnology in Dublin City University equipped me with proficiency in securely finding, accessing, aggregating, analyzing, sharing, and storing large genomic datasets across high performance compute clusters, commercial cloud-based platforms, and public data repositories. During my first Postdoctoral Research Fellowship for Genomics Aotearoa, I had the opportunity to partner with Māori to expand upon my initial western scientific training to co-create culturally respectful genomic informatics pipelines for the project that were both inclusive and responsive to the needs and rights of Indigenous Peoples but were also nationally accessible, and reproducible.
During my second postdoctoral position at the NIH, I directed a pilot project for the European Reference Genome Atlas (ERGA). For this, I constructed the first continent-wide distributed genomic sequencing infrastructure using justice, equity, diversity, inclusion and accessibility as navigating principles. During this position, I also became a member of the Telomere-to-Telomere Consortium, and contributed to the completion of the first complete sequence of a human genome. In addition, I conducted a detail in the NIH Office of Science Policy where I worked on the development of the new NIH Data Management and Sharing Policy, specifically leading resources for responsible data management and sharing with American Indian and Alaskan Native Tribes. During this time I also contributed to both IndigiData and SING.
Since moving to the Genomics Institute, I have been elected to the Executive Council of the Earth BioGenome Project, elected vice-chair of ERGA and became co-chair of the Human Pangenome Reference Consortium’s ELSI Committee and the Local Contexts Technical Implementation Working group. In addition to this work, I act as a “technical expert” role for many international science policy initiatives including the DSI Network, Native Biodata Consortium, and Local Contexts.

I’m a non-Native social scientist with training in bioethics and educational psychology. I have had the tremendous privilege of working with Tribal communities for nearly 20 years. During that time, I’ve done strengths-based research with American Indian and Alaska Native (AI/AN) colleagues and communities on a variety of health-related topics, ranging from biobanking and data-sharing to COVID-19 vaccines. I have also been part of several large national genomics and precision medicine consortia (including eMERGE I, II, and IV, the CSER Consortium, and the Pharmacogenetics Research Network) as well as two Centers of Excellence in ELSI Research, the Center for Genomics and Healthcare Equality and the Center for the Ethics of Indigenous Genomic Research. This work has included qualitative explorations concerning AI/AN community members’ and Tribal leaders’ views regarding biobank-based genetic research and precision medicine. I have a longstanding interest in the ethics and dynamics of equitable collaboration in health research, with an emphasis on community engagement, team science, research capacity-building, and epistemic justice. I serve as the Team Facilitator of the RADx-UP Tribal Data Repository, where I am using my skills as a “bridge person” to support communication within the TDR team, with participating Tribes, and with NIH.

I am one of few Native Americans (Diné/Navajo Nation) with training and expertise in the fields of human genetics, bioinformatics, public health, and bioethics. I began my research career at the laboratory bench, where I patented a combined targeted ultrasound imaging and chemotherapeutic drug delivery device for treating early metastases in cancer. My first Master’s degree focused on the bioethical implications of genetics research in Native American communities. I added biostatistical knowledge and computational programming in large genomics datasets during my second Master’s in public health (genetic epidemiology) where I studied disparities in uterine fibroids, a highly prevalent benign tumor in African American women, utilizing Vanderbilt University’s massive electronic health record repository (Synthetic Derivative and BioVU). As my primary interest was in studying fibroids outcomes including hypertensive risk, I also served as a biostatistical analyst in collaboration with a multi-institute cohort to identify novel blood pressure loci from exome data. My research incorporates community-engaged models with health and data science to produce equitable research that directly benefits Tribal communities. Of major importance is working with peer Indigenous scientists to co-found the nation’s first Indigenous-led bio-data repository, the Native BioData Consortium, I am now Assistant Professor in the School of Life Sciences and Associate Director of the Biodiversity Knowledge Integration Center at ASU. For this project I will also serve as the lead of the Community Engagement and Ethics Advisory Group.

There are two components needed for successful and ethical research in Native communities. They are local familiarity and investment and a robust scientific background. I have both. My home is in South Dakota, where my wife and kids are enrolled Lakota members. I was a high school science teacher in Lakota (Sioux) communities for 8 years. I am immersed in the culture and the ethos of South Dakota native communities and feel I know them well. I graduated from the Loyola University of Chicago with a B.S. in Psychology and minor in Biology. I have been a biomedical technician for 16 years in fields spanning neuro-endocrinology, drug abuse, cardiovascular endocrinology, renal function, kidney transplant and immunology. My training in Pharmaceutics at the University of Washington, was focused on Alaska and Montana native communities from both the pharmacogenomic & ELSI perspectives. The project and its leaders understood the importance of proper community engagement and education in order to anchor tribal approval processes in accurate and broad understanding of research implications. My interests lie in closing the health disparity gap for Native Americans and all Indigenous people of the Western Hemisphere. I am hoping to do that in a culturally appropriate and ethical manner. One of these interests is helping to educate and empower Native groups to make Indigenous Data Sovereignty a tool they use at their own discretion and benefit. Since, 2015 I have been involved in the Strong Heart Study (SHS), the Center on Ethics for Indigenous Genomic Research (CEIGR), the Northwest-Alaska Pharmacogenomics Network (NW PGRN), the Summer Internship for Indigenous Genomics (SING), Stanford’s Precision Health for Ethnic and Racial Equity (SPHERE) and the resulting entity from SPHERE, now known as the Native BioData Consortium. In my experience, there remain significant legal, intellectual property and cultural issues attached to this work. Luckily, I have been part of strategic national and international discussions on how to make tribal data more impactful and comprehensible to Tribal governments as well as brainstorming on how to make federal research partnerships align with tribal sovereignty. My personal ties to Tribal government and communities, my breadth of experience and my training make me a rare example of capacity and capabilities required for the future of Tribal data and health equity.