Annual Research Ethics Day Conference - Deepening Engagement and Equity in Research: Next Steps in Research Ethics

Research Ethics Day 2022
Wednesday, March 2, 2022 - 9:00am to 1:30pm
Online - Zoom - Central time

Join interdisciplinary experts to hear how engagement and equity will shape the future of research ethics. National leaders will discuss the challenges and benefits of enhanced engagement with historically underserved communities and how engagement can advance more equitable outcomes in precision medicine, environmental and global health, and neuroscience research. As a large, public, land-grant research university, we aim to explore these vital issues with our faculty, staff, trainees, students, and community, as well as a national audience.

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Conference Agenda

Annual Research Ethics Day Conference - Deepening Engagement and Equity in Research: Next Steps in Research Ethics

9:00am Welcome & Land Acknowledgment

 

Moderator: Susan M. Wolf, JD, Regents Professor; McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; Chair, Consortium on Law and Values in Health, Environment & the Life Sciences, University of Minnesota

J. Michael Oakes, PhD, Interim Vice President for Research; Professor of Epidemiology & Community Health, School of Public Health, University of Minnesota

9:15am

Advancing Engagement & Equity in Precision Medicine Research

 

Moderator: Rachel Hardeman, PhD, MPH, Blue Cross Endowed Professor of Health and Racial Equity; Director, Center for Antiracism Research for Health Equity, University of Minnesota

Consuelo Hopkins Wilkins, MD, MSCI, Senior Vice President and Senior Associate Dean for Health Equity and Inclusive Excellence; Co-Director, Vanderbilt Institute for Clinical and Translational Science, Vanderbilt University Medical Center; Engagement Core Director, All of Us Research Program

Katrina Claw, PhD, Assistant Professor, Medicine – Bioinformatics, University of Colorado School of Medicine

10:15am   Working with Communities in Environmental & Global Health Research

 

Moderator: Melissa A. Kenney, PhD, Director of Research & Knowledge Initiatives, Principal Environmental Decision Scientist, Institute on the Environment, University of Minnesota

Mónica Ramírez-Andreotta, MPA, PhD, Associate Professor of Soil, Water & Environmental Science; Division of Community, Environment & Policy, Mel and Enid Zuckerman College of Public Health, University of Arizona 

Shailey Prasad, MD, MPH, Professor of Family Medicine and Community Health, Executive Director & Carlson Chair of Global Health, Center for Global Health and Social Responsibility, University of Minnesota

11:15am    Break

11:30am

Ensuring Engagement & Equity in Brain & Neuroscience Research

 

Moderator: Francis X. Shen, JD, PhD, Professor of Law & McKnight Presidential Fellow, University of Minnesota; Instructor in Psychology, Harvard Medical School

Judy Illes, PhD, Professor of Neurology; UBC Distinguished University Scholar; Director, Neuroethics Canada, University of British Columbia

Jonathan Jackson, PhD, Executive Director, Community Access, Recruitment, and Engagement (CARE) Research Center, Massachusetts General Hospital and Harvard Medical School 

12:30pm Panel discussion – Considering How to Advance Engaged & Equitable Research in Our Communities

 

Moderator: Michele L. Allen, MD, MS, Associate Professor, Department of Family Medicine & Community Health; Director, Program in Health Disparities Research, University of Minnesota Medical School

Suzanne M. Rivera, PhD, MSW, President and Professor of Public Affairs, Macalester College; Immediate Past-Chair, Board of Directors, PRIM&R (Public Responsibility in Medicine & Research) 

Keisha Varma, PhD, Associate Vice Provost, Office of Equity & Diversity; Associate Professor of Educational Psychology, University of Minnesota

Paulette Baukol, MS, Lead Research Project Manager, Berman Center for Outcomes & Clinical Research, Hennepin Healthcare Research Institute; Founder & CEO, INDiGO Solutions, LLC; Member, Board of Directors, Minnesota Indian Women’s Resource Center; Community Co-Chair, Community Engagement to Advance Research & Community Health (CEARCH) Management Council, University of Minnesota

Daniel Stewart, JD, PhD, Legal Director, Minnesota Disability Law Center (MDLC); Protection & Advocacy Member, Minnesota Governor’s Council on Developmental Disabilities  

Atum Azzahir, D-Litt, Chief Executive Officer, Chief Cultural Compliance Officer, Elder Consultant in African Ways of Knowing, Cultural Wellness Center

1:25pm  

Closing Remarks & thanks

 

  Susan M. Wolf, JD

1:30pm

Adjourn

Speaker Biographies

Michele L. Allen, MD, MS, is Endowed Chair of Health Equity Research and an Associate Professor in the Department of Family Medicine & Community Health at the University of Minnesota Medical School. She is also the Director of the Program in Health Disparities Research and actively participates in health disparities research and scholarship. She specializes in family medicine. Dr. Allen received the Outstanding Mentor Award from the University of Minnesota Postdoctoral Association in 2015.

 

Atum Azzahir, D-Litt, is Chief Executive Officer, Chief Cultural Compliance Officer, and Elder Consultant in African Ways of Knowing at the Cultural Wellness Center. After successfully convening and leading a movement on Return to Culture and Heritage for Africans in America (1987-92), she was awarded titles of Elder, Shemsu and Mother of Communities of African People living in the United States, the Caribbean, and the African continent. Elder Azzahir completed  her Cultural Doctor of Literature (D-Litt Kemii) from the International Khepran Institute in 2007, where she examined Black life internationally and explored building sustainable cultural institutions in African communities throughout the African Diaspora. 

Paulette Baukol, MS, is the Lead Research Project Manager of the Berman Center for Outcomes & Clinical Research at Hennepin Healthcare Research Institute. She is also the Founder & CEO of INDiGO Solutions, LLC. She is Community Co-Chair of the University of Minnesota's Community Health (CEARCH) Management Council. Her research interests include Indigenous health disparities particular in relation to cancer and cancer research. She was Director of Operations for the “Spirit of EAGLES,” the only National American Indian/Alaska Native program funded by the National Cancer Institutes Community Networks Program. Paulette is an enrolled member of the Turtle Mountain Band of Chippewa and has served as a member of the Management Council since 2020.

Katrina Claw, PhD, a member of the Diné (Navajo) tribe, is an Assistant Professor at the University of Colorado (CU) Anschutz Medical Campus in the Division of Biomedical Informatics and Personalized Medicine, School of Medicine. She is faculty with the Colorado Center for Personalized Medicine and the Human Medical Genetics and Genomics Program at CU. Broadly, her research program focuses on personalizing medicine, using genetic information and biomarkers for tailored treatment, pharmacogenomics and well as understanding the ethical, cultural and social implications of genomic research with American Indian/Alaska Native and other Indigenous communities around the world. Dr. Claw is currently studying cytochrome P450 genetic variation, tobacco cessation and nicotine metabolism, evolutionary medicine, and examining the perspectives of genomic research in Native communities. Her projects use a community-based participatory research (CBPR) approach and ethical framework that are inclusive of traditional and Indigenous knowledge.

Rachel Hardeman, PhD, MPH, is an Associate Professor and the Blue Cross Endowed Professor of Health and Racial Equity in the Division of Health Policy and Management at the University of Minnesota's School of Public Health, as well as the Director of the Center for Antiracism Research for Health Equity. Dr. Hardeman is a reproductive health equity researcher using population health science and health services research to elucidate a critical and complex determinant of health inequity -- racism.

 

Judy Illes

Judy Illes, PhDis Professor of Neurology at the University of British Columbia (UBC), UBC Distinguished University Scholar, and Director of Neuroethics Canada. Dr. Illes is a pioneer in the field of neuroethics. Her research, teaching, and outreach initiatives are devoted to ethical, legal, social, and policy challenges at the intersection of the brain sciences and biomedical ethics. She has made groundbreaking contributions to neuroethical thinking for neuroscience discovery and clinical translation across the life span. Dr. Illes was awarded the Order of Canada, the country’s highest recognition of its citizens, in 2017.
 

Jonathan Jackson, PhDis the Executive Director of the Community Access, Recruitment, and Engagement (CARE) Research Center at Massachusetts General Hospital and Harvard Medical School. CARE investigates the impact of diversity and inclusion on the quality of research with human participants. Dr. Jackson's research focuses primarily on midlife and late-life health disparities that affect underserved populations. He has become a well-known representative to underrepresented communities in clinical research and affiliated organizations. Dr. Jackson also works as a cognitive neuroscientist and is currently investigating early detection of Alzheimer’s disease.

Melissa A. Kenney, PhD, is the Director of Research & Knowledge Initiatives and an environmental decision scientist at the Institute on the Environment, University of Minnesota. She is currently addressing how to integrate scientific knowledge and societal values into policy decision-making to counter uncertainty. She has expertise in conceptual modeling and decision structuring, indicators, systems analysis, multi-attribute methods, and evaluation of decision support to address environmental policy decisions.

 

J. Michael Oakes, PhD, is the Interim Vice President for Research at the University of Minnesota. He is a Professor in the Division of Epidemiology and Community Health in the School of Public Health as well as a member of the Healthy Weight Research Center. His research focuses primarily on applied methodology, social epidemiology, and research ethics, with interests in leadership, community-engaged research, and improving public health. Dr. Oakes co-founded the Robert Wood Johnson Foundation’s Interdisciplinary Research Leaders program.
 

Shailey Prasad, MBBS, MPH, is Professor of Family Medicine and Community Health, Carlson Chair of Global Health, and Executive Director of the University of Minnesota Center for Global Health and Social Responsibility. He has extensive experience working in underserved areas around the world, from southern India to rural Mississippi, advocating that health is critical to the overall development of an area. He has also been part of research teams in health services research and rural health and is actively involved in developing primary care in various parts of the world. He is interested in engaging systems to create sustainable changes in communities.

Mónica Ramírez-Andreotta, MPA, PhD, is an Assistant Professor of Soil, Water, and Environmental Science with a joint appointment in the College of Public Health's Division of Community, Environment and Policy at the University of Arizona. Her current research goal is to build citizen science programs and low-cost environmental monitoring tools to increase public participation in environmental health research. Her work addresses critical environmental health problems identified by the community through collaborative problem-solving and scientific research.
 

Suzanne M. Rivera, PhD, MSW, is President and Professor of Public Affairs at Macalester College. She is the most recent past-Chair of the Board of Directors of PRIM&R (Public Responsibility in Medicine & Research). She is a national expert on research ethics and issues in biomedical research and science policy. She has published on the moral dimensions of informed consent, use of human specimens, and protection of research participant privacy. She is a strong advocate for social justice and is committed to inclusion and equity in research and her role as President. 
 

Francis X. Shen, JD, PhD, is a Professor of Law and McKnight Presidential Fellow at the University of Minnesota as well as an Instructor of Psychology at Harvard Medical School. His research is focused on the intersection of law and the brain sciences. He conducts empirical and interdisciplinary research focusing on law and the brain sciences, including criminal law and crime policy, and education law and policy. He co-authored the first coursebook on law and neuroscience.

 

Daniel Stewart, JD, PhD, is Deputy Director and Legal Director for the Minnesota Disability Law Center (MDLC) and is a member of the Minnesota Governor’s Council on Developmental Disabilities. He is an advocate for systemic policy change in special education and employment. He also founded the University of Minnesota Law School’s Special Education Clinic.


 

Keisha Varma, PhD,is the Associate Vice Provost for the Office of Equity & Diversity, as well as an Associate Professor of Educational Psychology at the University of Minnesota. Her areas of interest include cognitive processes in science learning, scientific visualizations and student learning outcomes, and teacher knowledge development and effective teaching practices. Her research investigates the cognitive processes underlying science learning, including students' understanding of complex concepts.

 

CH Wilkins

Consuelo Hopkins Wilkins, MD, MSCI, is Professor of Medicine as well as Senior Vice President and Senior Associate Dean for Health Equity and Inclusive Excellence at the Vanderbilt University Medical Center. She is also the Co-Director of the Vanderbilt Institute for Clinical and Translational Science. She has pioneered methods of stakeholder engagement involving community members and patients in research across the translational spectrum. She is currently a Principal Investigator of three NIH-funded centers, all involving Vanderbilt University and enhancement of research participation and representation. She is also Director of the Engagement Core of the All of Us Research Program.

Susan M. Wolf, JD, is Regents Professor and McKnight Presidential Professor of Law, Medicine & Public Policy at the University of Minnesota. She is Chair of the University's Consortium on Law and Values in Health, Environment and the Life Sciences. Her research and teaching focus on health law, law and science, and bioethics. Prof. Wolf is an elected member of the National Academy of Medicine (NAM) and a Fellow of the American Association for the Advancement of Science (AAAS).

Planning Committee

Susan M. Wolf, JD, is Regents Professor and McKnight Presidential Professor of Law, Medicine & Public Policy at the University of Minnesota. She is Chair of the University's Consortium on Law and Values in Health, Environment and the Life Sciences. Her research and teaching focus on health law, law and science, and bioethics. Prof. Wolf is an elected member of the National Academy of Medicine (NAM) and a Fellow of the American Association for the Advancement of Science (AAAS).

 

Frances Lawrenz, PhD, is Associate Vice President for Research and Wallace Professor of Teaching and Learning in the Department of Educational Psychology, which is part of the College of Education and Human Development, University of Minnesota. She has been recognized by the American Educational Research Association, receiving the 2016 Research on Evaluation SIG Distinguished Scholar Award and by the National Association for Research in Science Teaching, with the Distinguished Contributions to Science Education through Research Award in 2014.

 

J. Michael Oakes, PhD, is the Interim Vice President for Research at the University of Minnesota. He is a Professor in the Division of Epidemiology and Community Health in the School of Public Health as well as a member of the Healthy Weight Research Center. His research focuses primarily on applied methodology, social epidemiology, and research ethics, with interests in leadership, community-engaged research, and improving public health. Dr. Oakes co-founded the Robert Wood Johnson Foundation’s Interdisciplinary Research Leaders program. 

 

Danielle Rintala

Danielle Rintala, MS, directs the Risk Intelligence and Compliance Team (RIACT) in the Office of the Vice President for Research at the University of Minnesota. RIACT monitors near- and long-term research risks; conducts compliance investigations, ensuring compliance in research-associated financial transactions and research registries; and manages Responsible Conduct of Research (RCR) training and the Certified Approver program. Prior to joining the University of Minnesota, she was the Associate Director of Research Compliance and Biosafety Officer at the University of Wisconsin-Milwaukee.

 

Doug Yee

Douglas Yee, MD, is Director of the Masonic Cancer Center, Professor of Medicine and Pharmacology, and John H. Kersey Chair in Cancer Research at the University of Minnesota. As Director of the Cancer Center, he serves as the point person for all cancer research at the University. He is a medical oncologist with a specialty in breast cancer. His laboratory has been interested in the regulation of cancer cells by the insulin-like growth factors (IGFs) and insulin. He serves as the site Principal Investigator on several clinical trials that employ experimental therapies targeted against IGF receptor and the PI3K pathway. He is Chair of the Agent Selection Committee and serves on the Executive Committee of the I-SPY2 trail, which is designed to validate investigational therapies in the neoadjuvant treatment of breast cancer.

Resources

Allen ML, Salsburg J, Knot M, LeMaster JW, Felzien M, et al. Engaging with Communities, Engaging with Patients: Amendment to the NAPCRG 1998 Policy Statement on Responsible Research with Communities. Family Practice 2016;34(3):313-321. 

Beach LB, Xavier Hall CD. Bi Us, For Us: Articulating Foundational Principles for Research in Partnership with Bisexual Communities. Journal of Bisexuality 2020;doi:10.1080/15299716.2020.1841706.

Beauvais MJS, Knoppers BM, Illes J. A Marathon, Not a Sprint – Neuroimaging, Open Science and Ethics. NeuroImage 2021;236(1);doi:10.1016/j.neuroimage.2021.118041.

Boulware LE, Corbie G., Aguilar-Gaxiola S, Wilkins, CH, Ruiz R, Vitale A, Egede L. Combating Structural Inequities — Diversity, Equity, and Inclusion in Clinical and Translational Research. New England Journal of Medicine 2022;386(3):201-203.

Claw KG, Anderson MZ, Begay RL, Tsosie KS, Fox K, et al. A Framework for Enhancing Ethical Genomic Research with Indigenous Communities. Nature Communications 2018;9(2957);doi:10.1038/s41467-018-05188-3.

Davis LF, Ramírez-Andreotta MD. Participatory Research for Environmental Justice: A Critical Interpretive Synthesis. Environmental Health Perspectives 2021;129(2);doi:10.1289/EHP6274.

Davis LF, Ramírez-Andreotta MD, Buxner SR.  Engaging Diverse Citizen Scientists for Environmental Health: Recommendations from Participants and Promotoras. Citizen Science: Theory and Practice 2020;5(1):7;doi:10.5334/cstp.253.

Gardenroots. Home Page. University of Arizona. 2022. 

Gilmore-Bykovskyi A, Croff R, Glover CM, Jackson JD, Resendez J, et al. Traversing the Aging Research and Health Equity Divide: Toward Intersectional Frameworks of Research Justice and Participation. Gerontologist 2021;gnab107;doi:10.1093/geront/gnab107.

Gilmore-Bykovskyi A, Jackson JD, Wilkins CH. The Urgency of Justice in Research: Beyond COVID-19. Trends in Molecular Medicine 2021;27(2):97-100.

Hardeman RR, Karbeah JM. Examining Racism in Health Services Research: A Disciplinary Self-Critique. Health Services Research 2020;55(Suppl 2):777-780.

James RD, West KM, Claw KG, EchoHawk A, Dodge L, et al. Responsible Research with Urban American Indians and Alaska Natives. American Journal of Public Health 2018;108(12):1613-1616.

Liddiard K, Runswick-Cole K, Goodley D, Whitney S, Vogelmann E, Watts L. “I Was Excited by the Idea of a Project that Focuses on those Unasked Questions”: Co-Producing Disability Research with Disabled Young People. Children & Society 2019;33:154-167.

Mapes BM, Foster CS, Kusnoor SV, Epelbaum MI, AuYoung M, et al. Diversity and Inclusion for the All of Us Research Program: A Scoping Review. PLoS ONE 2020;15(7);doi:10.1371/journal.pone.0234962.

National Institute of Environmental Health Sciences. Community-Engaged Research and Citizen Science. 2019. 

National Institute on Minority Health and Health Disparities. Community-Based Participatory Research Program (CBPR). U.S. Department of Health & Human Services. 2018. 

Perreault ML, King M, Gabel C, Mushquash CJ, De Koninck Y, et al. An Indigenous Lens on Priorities for the Canadian Brain Research Strategy. Canadian Journal of Neurological Sciences 2021;1-9;doi:10.1017/cjn.2021.501.

Project Harvest. Home Page. University of Arizona. 

Quiñones AR, Mitchell SL, Jackson JD, Aranda MP, Dilworth-Anderson P, et al. Achieving Health Equity in Embedded Pragmatic Trials for People Living with Dementia and Their Family Caregivers. American Geriatrics Society 2020;68(52):S8-S13.  

Strauss DH, White SA, Bierer BE. Justice, Diversity, and Research Ethics Review. Science 2021;371(6535):1209-1211.

Sugarman OK, Wennerstrom A, Pollock M, Griffith K, Rey E, et al. Engaging LGBTQ Communities in Community-Partnered Participatory Research: Lessons from the Resilience Against Depression Disparities Study. Progress in Community Health Partnerships: Research, Education, and Action 2021;15(1):65-74.    

Walmsley J, Stnadová, Johnson K. The Added Value of Inclusive Research. JARID 2017;31(5):751-759.

Wilkins CH, Edwards TL, Stroud M, Kennedy N, Jerome RN, Lawrence CE, Kusnoor SV, et al. The Recruitment Innovation Center: Developing Novel, Person-Centered Strategies for Clinical Trial Recruitment and RetentionJournal of Clinical and Translational Science 2021;5(1);doi:10.1017/cts.2021.841.

Wilkins CH, Mapes BM, Jerome RN, Villalta-Gil V, Pulley JM, Harris PA. Understanding What Information Is Valued by Research Participants, and Why. Health Affairs 2019;38(3):399-407.

Zeider K, Van Overmeiren N, Pine KP,  Sandhaus S, Sáez AE, et al. Foliar Surfaces as Dust and Aerosol Pollution Monitors: An Assessment by a Mining Site. Science Total Environment 2021;790:148164.

Presented by the Office of the Vice President for ResearchConsortium on Law and Values in Health, Environment & the Life SciencesMasonic Cancer Center; and Clinical and Translational Science Institute, University of Minnesota.

This conference is part of Research Ethics Week (Feb. 28 - March 4, 2022), during which the University of Minnesota focuses on professional development and best practices to ensure safety and integrity in research. A complete list of Research Ethics Week events is available.

Follow us on Twitter: @UMNconsortium
Join the conversation by using #ResearchEthics2022

Disclosure information is available.

Land Acknowledgment:

The University of Minnesota - Twin Cities is built within the traditional homelands of the Dakota people. It is important to acknowledge the peoples on whose land we live, learn, and work as we seek to improve and strengthen our relations with our tribal nations. We also acknowledge that words are not enough. We must ensure that our institution provides support, resources, and programs that increase access to all aspects of higher education for our American Indian students, staff, faculty, and community members.

Continuing Education Information:

Accreditation Statement
In support of improving patient care, University of Minnesota, Interprofessional Continuing Education is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC) to provide continuing education for the healthcare team.

Credit Designation Statements

American Medical Association (AMA)
The University of Minnesota, Interprofessional Continuing Education designates this live activity for a maximum of 4.0 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Other Healthcare Professionals
Other healthcare professionals who participate in this CE activity may submit their statement of participation to their appropriate accrediting organizations or state boards for consideration of credit. The participant is responsible for determining whether this activity meets the requirements for acceptable continuing education.

Minnesota Board of Continuing Legal Education
This course has been approved for up to 4.0 Standard CLE Credit Hours by the Minnesota Board of Continuing Legal Education. Event code: 439691

Educational Objectives for this webinar include:

  • Describe strategies to increase community and participant engagement in the conduct of research, including clinical research with patients.
  • Identify opportunities to enhance equity in formulation of research questions, recruitment and retention of research participants, and the conduct of research, including clinical research with patients.
  • Analyze the importance of addressing equity and engagement in research, including clinical research with patients.