• The 5th Annual CCTS Bioethics Forum has concluded. Thank you for attending. If you missed it, please see the wrap up that includes video from the forum.

    The 5th Annual CCTS Bioethics Forum brings together researchers, bioethicists, students, community members, front-line research staff, and clinical staff to discuss ethical issues in research.

    What is the purpose of the 5th Annual CCTS Bioethics Forum?

    1. To provide the ‘reflective space’ that stakeholders (prospective participants, researchers and research personnel, institutions) engaged in the research enterprise need for critical reflection; and

    2. To facilitate with stakeholders increased awareness of pertinent issues crucial to promoting and maintaining a ‘culture of ethical exploration’ in CCTS institutions engaged in biomedical research.

    ccts tuskegee FINAL



                                     

  • 5th Annual CCTS Bioethics Forum
    Engagement of Diverse Populations in Research: Challenges and Lessons Learned from Cohort Studies

    8:00-8:30  Registration, Breakfast & Networking

    8:30-8:50  Welcome & Opening Session Activity
    Attendees will be polled/encouraged to share challenges & barriers to engaging research participants.

    8:50-9:20  Overview of Studies
    A brief overview of each study that will be discussed over the course of the day.

    9:20-9:30  Coffee Break

    9:30-10:45  Panel 1 - Best Practices for Participant Engagement from the Perspective of Project Directors
    This panel is comprised of project directors engaged in the day-to-day operations of research studies. Panelists will draw upon their nuanced understanding of the successes & challenges related to participant engagement.

    10:45-11:00  Coffee Break

    11:00-12:15  Panel 2 - Best Practices for Participant Engagement from the Perspective of Community Representatives (i.e. community advisory board members)
    This panel is comprised of community representatives engaged in recruiting study participants. Panelists will draw upon their nuanced understanding of the successes & challenges related to participant recruitment & engagement in the community.

    12:15-12:30  Lunch Break (Lunch Provided)

    12:30-1:20  Keynote Address, Dr. Tom May

    1:20-2:00  Closing
    Attendees will brainstorm & share ideas & strategies for engaging research participants.

    2:15-3:00  Bioethics Administrative Supplement Discussion *Optional Session*

  • Alabama Genomic Health Initiative (AGHI)

    Unlocking the potential in the human genome is part of the future of health care, and as the state’s leader in genomic medicine, UAB Medicine is taking a major step forward with the Alabama Genomic Health Initiative (AGHI).

    The program is aimed at preventing and treating disease, including certain types of cancer, heart problems, and genetic disorders. In collaboration with the HudsonAlpha Institute for Biotechnology in Huntsville, UAB Medicine will provide genomic testing, interpretation, and counseling free of charge to residents in each of Alabama’s 67 counties. The AGHI also includes a major focus on research, through which data from test results will be used to advance scientific understanding of the role that genes play in health and disease.

    The Alabama Genomic Health Initiative is one of the nation's first statewide efforts to harness the power of genomic analysis in helping identify those who are at risk for diseases for genomic abnormalities. AGHI Leadership includes members from UAB, HudsonAlpha Institute for Biotechnology and Tuskegee University, nationally recognized institutions that are leaders in bioethics and genomic medicine. Learn more here: https://www.uabmedicine.org/aghi

    All of Us Research Program

    All of Us is a new research program from the National Institutes of Health (NIH). The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

    The mission of the All of Us Research Program is simple. We want to speed up health research and medical breakthroughs. To do this, we’re asking one million people to lead the way to provide the types of information that can help us create individualized prevention, treatment, and care for all of us. Learn more here: https://www.joinallofus.org/en

    Jackson Heart Study

    The Jackson Heart Study exemplifies a unique collaborative model among Jackson State University, the Mississipi State Department of Health, Tougaloo Colllege and the University of Mississippi Medical Center to disover and test best practices for eliminating health disparities.

    The mission of the JHS is to elucidate the reasons for the greater prevalence of cardiovascular disease among African Americans and to uncover new approaches for reducing this health disparity. In addressing its mission, the Jackson Heart Study values accountability, commitment, competency, collaboration, excellence, respect, teamwork, and trust. Learn more here: https://www.jacksonheartstudy.org/

    Risk Underlying Rural Areas Longitudinal (RURAL)

    The RURAL (Risk Underlying Rural Areas Longitudinal) Cohort Study aims to address critical gaps in our knowledge of heart and lung disorders in rural counties in the southeastern US. With our mobile research vehicle, we will travel to rural counties to research their health. We hope that our research findings will promote the health of rural communities. Learn more here: http://www.theruralstudy.org/

    Women’s Interagency HIV Study (WIHS)

    The Women’s Interagency HIV Study (WIHS) is a large, comprehensive prospective cohort study designed to investigate the progression of HIV disease in women. The WIHS began in 1993 in response to growing concern about the impact of HIV on women. The core study visit includes a detailed and structured interview, physical and gynecologic examinations, and laboratory testing.

    After more than 20 years, the WIHS continues to investigate questions at the forefront of HIV research, spanning topics such as women’s reproductive health, clinical outcomes (for example, cardiovascular disease, diabetes, and others), and the effectiveness of antiretroviral therapy. Learn more here: https://statepi.jhsph.edu/wihs/wordpress/
  • Hilton Birmingham at UAB
    808 South 20th Street South
    Birmingham, Alabama 35205

    hilton

  • David Chaplin, MD, PhDDavid Chaplin, MD, PhD
    Professor
    Department of Microbiology
    School of Medicine
    University of Alabama at Birmingham
    This email address is being protected from spambots. You need JavaScript enabled to view it.

    Dr. Chaplin completed his undergraduate education at Harvard University in 1973, then undertook graduate training in the MD/PhD program at Washington University, graduating in 1980. He completed two years of Internal Medicine Residency at U of Texas/Southwestern Medical School, Parkland Memorial Hospital. His post-doctoral research training was with Dr. J.G. Seidman in the Department of Genetics at Harvard Medical School, studying the genetics of the murine major histocompatibility complex. In 1984, he accepted a position as Associate Investigator of the Howard Hughes Medical Institute and Assistant Professor of Medicine, Molecular Microbiology, and Genetics at Washington University in St. Louis. He was promoted to Associate Professor in 1992, and Professor in 1995. He was Director of the Division of Allergy and Immunology from 1994-2001. In July 2001, he joined the faculty of UAB as Charles H. McCauley Professor and Chairman of the Department of Microbiology.

    Faith Fletcher, PhDFaith Fletcher, PhD, MA
    Assistant Professor
    Department of Health Behavior
    School of Public Health
    University of Alabama at Birmingham
    This email address is being protected from spambots. You need JavaScript enabled to view it.

    Faith E. Fletcher, PhD, MA is an Assistant Professor at the University of Alabama at Birmingham School of Public Health in the Department of Health Behavior. The overall goal of Dr. Fletcher’s research program is to develop and implement community- and clinic-based social and behavioral research to reduce HIV-related disparities among African American women. Her research is grounded in methodological and theoretical approaches from public health, bioethics, and behavioral science. Additional training offered through Fordham University’s HIV Research Ethics Training Institute has positioned her to conduct empirical research ethics studies to examine and address health disparities among HIV-positive women with respect to the ethics of research participation. In particular, Dr. Fletcher seeks to develop ethical policies and strategies to alleviate vulnerability to HIV-related stigma associated with health care setting and research study engagement. To date, Dr. Fletcher’s research has been funded through the University of Illinois at Chicago Program for Building Interdisciplinary Careers in Women's Health Research K12 Fellowship, Society of Family Planning, Center for AIDS Research, Center for Clinical and Translational Science, Kaiser Permanente Burch Minority Leadership Program, and Centers for Disease Control and Prevention Public Health Dissertation Program (R36). For her commitment to health disparities and social justice, Dr. Fletcher was a 2017 recipient of the National Minority Quality Forum’s 40 Under 40 Leaders in Minority Health Award. Her educational background includes a BS in Biology from Tuskegee University; MA in Bioethics, Humanities, and Society from Michigan State University; and PhD in Health Promotion, Education and Behavior from the University of South Carolina. Dr. Fletcher also completed a National Cancer Institute R25T-funded Postdoctoral Fellowship in the Department of Behavioral Science at The University of Texas MD Anderson Cancer Center.

    Bruce Korf, MD, PhDBruce Korf, MD, PhD
    Professor, Associate Dean and Chief Genomics Officer
    Department of Genetics
    School of Medicine
    University of Alabama at Birmingham
    This email address is being protected from spambots. You need JavaScript enabled to view it.

    Dr. Korf is Wayne H. and Sara Crews Finley Chair in Medical Genetics, Professor and Chair of the Department of Genetics, Director of the Heflin Center for Genomic Sciences at UAB, and Co-Director of the UAB-HudsonAlpha Center for Genomic Medicine. He is a medical geneticist, pediatrician, and child neurologist, certified by the American Board of Medical Genetics (clinical genetics, clinical cytogenetics, clinical molecular genetics), American Board of Pediatrics, and American Board of Psychiatry and Neurology (child neurology). Dr. Korf is past president of the Association of Professors of Human and Medical Genetics, past president of the American College of Medical Genetics and Genomics, and current president of the ACMG Foundation for Genetic and Genomic Medicine. He has served on the Board of Scientific Counselors of the National Cancer Institute and the National Human Genome Research Institute at the NIH. He chairs the Medical Advisory Committee of the Children's Tumor Foundation and serves on the CTF Board of Directors. His major research interests are the natural history, genetics, and treatment of neurofibromatosis and the integration of genomics into medical practice. He serves as principal investigator of the Department of Defense funded Neurofibromatosis Clinical Trials Consortium. He is co-author of Human Genetics and Genomics (medical student textbook, now in fourth edition), Medical Genetics at a Glance (medical student textbook, now in third edition), Emery and Rimoin's Principles and Practice of Medical Genetics (now in 6th edition), and Current Protocols in Human Genetics.

    Chiquita Lee, MBA, MPAChiquita Lee, MBA, MPA
    Program Manager
    Center for Biomedical Research
    Tuskegee University
    This email address is being protected from spambots. You need JavaScript enabled to view it.

    Chiquita Lee is the Program Manager for two major research programs at Tuskegee University, the Morehouse School of Medicine/Tuskegee University/University of Alabama at Birmingham O’Neal Comprehensive Cancer Center Partnership and the Center for Biomedical Research/Research Centers in Minority Institutions (CBR/RCMI).  Any successes experienced by these multi-million dollar funding resources is directly attributed to the dedication, work ethic, and professionalism she puts forth daily to make these programs and Tuskegee University stand out.


    Lucio Miele, MD, PhDLucio Miele, MD, PhD
    Professor and Chair
    Department of Genetics
    University of Louisiana State University Health Sciences Center
    This email address is being protected from spambots. You need JavaScript enabled to view it.

    Dr. Miele is the Head of the 17-faculty Genetics Department at LSUHSC. He oversees the newly created Precision Medicine Program and Bioinformatics and Genomics Research Program. He also serves in the following capacities: LA CaTS Center: Director of Biomedical Informatics; LSUHSC Stanley Scott Cancer Center, Director for Inter-Institutional Programs; UAB CCTS Partner Network: Co-Director; Mid-South TCC on Social Determinants of Health Disparities: LSUHSC PI. Molecular genetics has been at the core of Dr. Miele’s research since his PhD work at the Max-Planck Institute for Molecular Genetics in Berlin and his fellowship at Human Genetics Branch (NICHD). Dr. Miele was a member of the Division of Clinical Trials Design and Analysis at CBER, FDA and has served as co-chair of the NCI CTEP task force on clinical trials targeting cancer stem cells. Dr. Miele is an experienced manager of large projects. At the UMMC Cancer Institute, Dr. Miele oversaw 11 full member faculty and 30 associate members, organized into 3 basic and one clinical program. Al LSUHSC, Dr. Miele has taken the lead in precision medicine, creating the Precision Medicine Program and becoming the site PI for the Southern “All of Us” initiative, as well as receiving an NCI P20 grant in partnership with Moffitt Comprehensive Cancer Center to perform cancer health disparities precision medicine research and training of investigators in cancer health disparities research. Dr. Miele has authored over 225 peer-reviewed publications in biomedical journals to date. He regularly chairs scientific grant review panels for NIH, NCI, NCATS, the DOD and research funding agencies from European and Asian countries. He serves as Editor or Associate Editor of several biomedical journals, and has consulted for pharmaceutical and biotechnology companies regarding oncology drug development. Dr. Miele’s research is focused on breast cancer, with particular interest in cancer health disparities, precision medicine, breast cancer stem cells, genomics, and experimental therapeutics. He has been NIH funded since 1999, when he left the Federal Government for academia.

    Mariko Nakano, PhDMariko Nakano, PhD
    Assistant Professor
    Department of Medical Education
    School of Medicine
    University of Alabama at Birmingham
    This email address is being protected from spambots. You need JavaScript enabled to view it.

    Mariko Nakano-Okuno, Ph.D. is Assistant Professor of Bioethics at the Department of Medical Education, UAB School of Medicine, and Co-leader of the Bioethics Working Group for the Alabama Genomic Health Initiative. She is engaged in the medical ethics curriculum at the UAB School of Medicine, teaches medical ethics courses, serves as a member of Hospital Ethics Committees, among her other missions at UAB. Her scholarly work includes both highly theoretical pieces such as Sidgwick and Contemporary Utilitarianism (monograph, Palgrave McMillan, 2011) and writings in applied bioethics such as "Ethics of iPSC-Based Clinical Research for Age-Related Macular Degeneration: Patient-Centered Risk-Benefit Analysis" (Stem Cell Reviews and Reports, 2014) therapeutics. He has been NIH funded since 1999, when he left the Federal Government for academia.

    Rebecca Reamey, PhD, MARebecca Reamey, PhD, MA
    Program Director
    Center for Clinical & Translational Science
    Scientific Community of Outcomes Researchers
    School of Medicine
    University of Alabama at Birmingham
    This email address is being protected from spambots. You need JavaScript enabled to view it.

    Dr. Rebecca Reamey has over 15 years of experience in curriculum design, program management, and teaching. She has a background in higher education student development with an emphasis in professional and workforce development. Dr. Reamey’s research and scholarship focus on program evaluation and training outcomes. She coordinates efforts to continuously improve the training opportunities within the CCTS Partner Network for the Training Academy and is a member of the Training Academy Steering Committee.

    Stephen Sodeke, PhD, MAStephen Sodeke, PhD, MA
    Professor & Resident Bioethicist & Professor of Bioethics
    Center for Biomedical Research & Modern Languages, Communication, and Philosophy
    Tuskegee University
    This email address is being protected from spambots. You need JavaScript enabled to view it.

    Dr. Sodeke’s research interests includes research ethics, population ethics, neuroethics, cross-cultural bioethics; community bioethics and issues related to community-based participatory research approach,health and human rights; ethical issues in health and health outcomes disparities, and in research with vulnerable populations in the United States and the developing world.

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  • Race and Medicine: The Harm That Comes From Mistrust

    Racial bias still affects many aspects of health care.

    By Austin Frakt

    Jan. 13, 2020, 5:00 a.m. ET – NY Times

    Racial discrimination has shaped so many American institutions that perhaps it should be no surprise that health care is among them. Put simply, people of color receive less care — and often worse care — than white Americans.

    Reasons includes lower rates of health coverage; communication barriers; and racial stereotyping based on false beliefs.

    Predictably, their health outcomes are worse than those of whites.

    African-American patients tend to receive lower-quality health services, including for cancer, H.I.V., prenatal care and preventive care, vast research shows. They are also less likely to receive treatment for cardiovascular disease, and they are more likely to have unnecessary limb amputations.

    As part of “The 1619 Project,” Evelynn Hammonds, a historian of science at Harvard, told Jeneen Interlandi of The New York Times: “There has never been any period in American history where the health of blacks was equal to that of whites. Disparity is built into the system.”

    African-American men, in particular, have the worst health outcomes of any major demographic group. In part, research shows, this is a result of mistrust from a legacy of discrimination.

    Tuskegee and lower life expectancy

    At age 45, the life expectancy of black men is more than three years less than that of non-Hispanic Caucasian men. According to a study in the Quarterly Journal of Economics, part of the historical black-white mortality difference can be attributed to a 40-year experiment by the U.S. Public Health Service that shook African-Americans’ confidence in the nation’s health system.

    From 1932 to 1972, the Public Health Service tracked about 600 hundred low-income African-American men in Tuskegee, Ala., about 400 of whom had syphilis. The stated purpose was to better understand the natural course of the disease. To do so, the men were lied to about the study and provided sham treatments. Many needlessly passed the disease on to family members, suffered and died.

    As one scholar put it, the Tuskegee study “revealed more about the pathology of racism than it did about the pathology of syphilis.” In fact, the natural course of syphilis was already largely understood.

    The study was publicized in 1972 and immediately halted. To this day, it is frequently cited as a driver of documented distrust in the health system by African-Americans. That distrust has helped compromise many public health efforts — including those to slow the spread of H.I.V., contain tuberculosis outbreaks and broaden provision of preventive care.

    According to work by the economists Marcella Alsan and Marianne Wanamaker, black men are less likely than white men to seek health care and more likely to die at younger ages. Their analysis suggests that one-third of the black-white gap in male life expectancy in the immediate aftermath of the study could be attributed to the legacy of distrust connected to the Tuskegee study.

    Their study relies on interpreting observational data, not a randomized trial, so there is room for skepticism about the specific findings and interpretation. Nevertheless, the findings are consistent with lots of other work that reveals African-Americans’ distrust of the health system, their receipt of less care, and their worse health outcomes.

    The Tuskegee study is far from the only unjust treatment of nonwhite groups in health care. Thousands of nonwhite women have been sterilized without consent. For instance, between the 1930s and 1970s, one-third of Puerto Rican women of childbearing age were sterilized, many under coercion.

    Likewise, in the 1960s and 1970s, thousands of Native American women were sterilized without consent, and a California eugenics law forced or coerced thousands of sterilizations of women (and men) of Mexican descent in the 20th century. (Thirty-two other states have had such laws, which were applied disproportionately to people of color.)

    For decades, sickle cell disease, which mostly affects African-Americans, received less attention than other diseases, raising questions about the role of race in how medical research priorities are established.

    Outside of research, routine medical practice continues to treat black and white patients differently. This has been documented in countless ways, including how practitioners view pain. Racial bias in health care and over-prescription of opioid painkillers accidentally spared some African-Americans from the level of mortality from opioid medications observed in white populations.

    “While African-Americans may not have died at similar rates from opioid misuse, we can be sure needless suffering and, perhaps even death, occurred because provider racism prevented them from receiving appropriate care and pain medication,” said Linda Goler Blount, president and chief executive of the Black Women’s Health Imperative.

    Black patients and black doctors

    Of course, health outcomes are a result of much more than health care. The health of people of color is also unequal to that of whites because of differences in health behaviors, education and income, to name a few factors. But there is no doubt that the health system plays a role, too. Nor is there question that a history of discrimination and structural racism underlies racial differences in all these drivers of health.

    Reinforcing the fact of racial bias in health care, a recent study found that care for black patients is better when they see black doctors. The study randomly assigned 1,300 African-Americans to black or nonblack primary care physicians. Those who saw black doctors received 34 percent more preventive services. One reason for this, supported by the study, is increased trust and communication.

    The study findings are large. If all black men received the same increase in preventive services as those in the study (and received appropriate follow-up care), it would reduce the black-white cardiovascular mortality rate by 19 percent and shrink the total black-white male life expectancy gap by 8 percent, the researchers said.

    But it is unlikely all black men could see black doctors even if they wished to. Although African-Americans make up 13 percent of the U.S. population, only 4 percent of current physicians — and less than 7 percent of recent medical school graduates — are black.

    This study does not stand alone. A systematic review found that racially matched pairs of patients and doctors achieved better communication. Other studies found that many nonwhite patients prefer practitioners who share their racial identity and that they receive better care from them. They view them as better than white physicians in communicating, providing respectful treatment and being available.

    Racial bias in health care, as in other American institutions, is as old or older than the republic itself.

    Title VI of the 1964 Civil Rights Act stipulates that neither race, color nor national origin may be used as a means of denying the “benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” As nearly every facet of the American health system receives federal financing and support, well-documented and present-day discrimination in health care suggests the law has not yet had its intended effect.

  • Join the 5th Annual CCTS Bioethics Forum remotely!

    Meeting Number: 966-558-588
    Join online: https://uasystem.zoom.us/j/966558588

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