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ACMG greatly acknowledges Myriad Women’s Health and Bionano Genomics, Inc. for their support of this course by providing independent educational grants.

Friday, May 14, 2021, 12:30 pm ET – 4:30 pm ET

Format: Zoom Webinar accessed via the ACMG Genetics Academy (free account required)

Purpose:

Inequalities in healthcare in the US have been documented for racial and ethnic minority members: African-Americans, Native Americans, Asians, LatinX, as well as women, immigrants and refugees, people with disabilities, members of the LGBTQ+ community, certain religious and cultural groups, prisoners, and individuals with certain chronic medical conditions. Institutional racism and implicit bias contribute to unequal access to basic health care, and worse outcomes for disadvantaged patients even after controlling for insurance status and demographic factors. The purpose of this forum is to explore the history of health care inequity, and the current state of health care differences and disparities for minority patient populations with respect to prenatal care, and adult hereditary breast and ovarian cancer. The speakers will identify the sources, scope, research into, and solutions for healthcare disparities in genetics.

Learning Objectives:

At the conclusion of this session, participants should be able to:

• Recall three groups of patients who are at risk to experience poorer healthcare outcomes for genetic conditions.
• Identify the historical, social, institutional, and individual factors that contribute to healthcare disparities.
• Interpret the reasons behind underutilization of genetic testing for hereditary breast ovarian cancer in African-American and LatinX women.
• Demonstrate factors identified to contribute to disparities in prenatal care.
•  Differentiate explicit and implicit bias, and how to recognize and reduce implicit bias.
•  Describe strategies to reduce disparities in access to genetic counseling.
•  Identify the major goals of the All of Us Program.

Target Audience:

Clinical geneticists, Lab geneticists, Genetic counselors, OB-GYN physicians, and Advanced Practice Providers who care for women. Pediatricians interested in genetics

Agenda (Times listed in Eastern Time Zone)

12:30 pm - 12:35 pm                      Welcome
                                                                Fuki M. Hisama MD, FACMG and Cinthya Zepeda Mendoza

Part 1: Raising Awareness About Health Disparities in Genetics

12:35 pm - 1:00 pm                         The History of Race Medicine
                                                                Edwin G. Lindo, JD

1:00 pm - 1:05 pm                           Q&A

1:05 pm - 1:30 pm                           Disparities in Prenatal Care
                                                                Judette Louis, MD, MPH

1:30 pm - 1:35 pm                           Q&A

1:35 pm - 2:00 pm                           Genetic Disparities in Hereditary Breast/Ovarian Cancer
                                                                Tuya Pal, MD, FACMG

2:00 pm - 2:05 pm                           Q&A

2:05 pm - 2:20 pm                           Break

Part 2: Opportunities to Reduce Health Disparities in Genetics Through Education and Research

2:20 pm                                                Welcome back

2:20 pm - 2:50 pm                           Improving Genetic Counseling Across Literacy, Language Barriers and for Underserved Patients
Laura Amendola, MS, CGC

2:50 pm - 2:55 pm                           Q&A

2:55 pm - 3:20 pm                           Project Inclusive on Implicit Bias Regarding Disability
                                                                Shoumita Dasgupta, PhD

3:20 pm - 3:25 pm                           Q&A

3:25 pm - 3:50 pm                           The All of Us Research Program
                                                                Justin Hentges, MPP

3:50 pm - 3:55 pm                           Q&A

3:55 pm - 4:30 pm                           Panel Discussion

Meet the Planning Committee

Fuki M. Hisama MD, FACMG

Professor of Medicine (Medical Genetics), University of Washington

Dallas Reed, MD, FACMG, FACOG

Assistant Professor, Department of Obstetrics/Gynecology, Tufts University School of Medicine; Division Chief of Genetics, Tufts Children’s Hospital; Director of Perinatal Genetics, Tufts Medical Center

Cinthya Zepeda Mendoza, PhD

Assistant Professor, Department of Pathology, University of Utah; Medical Director, Cytogenetics and Genomic Microarray, ARUP Laboratories

Alka Chaubey, PhD, FACMG

Chief Medical Officer, Bionano Genomics, and Scientific Director, GEM Lab, Augusta University

Katy Phelan, PhD, FACMG

Director, Genetics Laboratory, Florida Cancer Specialists and Research Institute

Meet the Faculty

Fuki M. Hisama, MD, FACMG

Professor of Medicine (Medical Genetics), University of Washington

Dr. Hisama is Professor of Medicine (Medical Genetics) at the University of Washington. She is known for her work in clinical genetics education, neurogenetics, progeroid syndromes and the translation of genomics into clinical care. She began the Diversity Breakfast at the ACMG, and is a member of the ACMG Diversity, Equity and Inclusion Committee.  She is the Program Director for the UW Genetics residency and Co-PI for the T32 Medical Genetics fellowship programs. Dr. Hisama is a recipient of the UW Committee on Minority Faculty Advancement Outstanding Mentor Award, and the UW School of Medicine Outstanding Research Mentor Award for her support of medical student research.

Cinthya Zepeda Mendoza, PhD, FACMG

Medical Director, ARUP Laboratories, Assistant Professor at the University of Utah

I have a broad background in genomic sciences, with specific training in bioinformatics and human genetics. As a graduate student at Cold Spring Harbor Laboratories I carried out molecular research on the structure of chromatin upon occurrence of copy-number variation. The intricate relationship between genome structure and function prompted me to pursue human disease. As a postdoctoral fellow at Brigham and Women's Hospital and Harvard Medical School I laid the groundwork for the development of computational tools to aid in the identification of position effects for balanced chromosome rearrangements. This analysis provided answers for the etiology of disease of various individuals enrolled in the Developmental Genome Anatomy Project, of which I had the pleasure of being part of. I took this experience to the clinic by joining the Laboratory Genetics and Genomics fellowship from Mayo Clinic, where I focused in the analysis of complex chromosome rearrangements associated with congenital diseases, structural variation in hematological malignancies (with a focus on B-cell ALL), and the study of molecular signatures of adult diffuse gliomas. I am currently a medical director at ARUP Laboratories with an appointment as an Assistant Professor at the University of Utah. At ARUP, I have continued with my interests in human disease research, their diagnosis, and most importantly, the education of fellows and residents. It is my hope that my academic career and research path helps others find their own!

Edwin G. Lindo, JD

University of Washington School of Medicine, Assistant Dean for Social & Health Justice, Office of Health Care Equity

Edwin G. Lindo, JD, is a Critical Race Theory Scholar and educator who is faculty in the Department of Family Medicine and Assistant Dean for Social and Health Justice at the University of Washington School of Medicine.  Professor Lindo teaches, presents, and writes on issues of race and racism in Medicine and society.  His scholarly work directly addresses and explores the effects of racism and other forms of marginalization so that we can collectively achieve health justice.

Judette Louis, MD, MPH

Associate Professor and Chair, Department of Obstetrics and Gynecology, Morsani College of Medicine at University of South Florida

Dr. Louis is the Department Chair for the Department of OB/GYN at University of South Florida.  She is a specialist in Maternal Fetal Medicine and serves as the Immediate Past President for the Society for Maternal Fetal Medicine. Dr. Louis has a joint faculty appointment in both the College of Public Health and the College of Medicine. Her research in obstructive sleep apnea in pregnant women led to a career focused on maternal morbidity and mortality. Her research has been funded by NIH, foundation and industry grants. Dr. Louis has focused recently on   advocacy work in research and has been a champion of studying sex and gender differences of therapeutics and inclusion of pregnant people in clinical trials.

Tuya Pal, MD, FACMG

Professor, Department of Medicine (Genetic Medicine), Vanderbilt University Medical Center, and Associate Director, Cancer Health Disparities, Vanderbilt-Ingram Cancer Center

Tuya Pal is a Professor of Medicine and an Ingram Professor of Cancer Research at the Vanderbilt University Medical Center, where she is also the Associate Director for Cancer Health Disparities at the Vanderbilt Ingram Cancer Center. Her research is focused on identification of genetic risk factors that place individuals at a higher risk for cancer, as well as strategies to reduce this risk. These efforts have included a focus on underserved populations, particularly young Black women with breast cancer. She has also led multiple efforts to better understand the provision of clinical cancer genetic services across diverse populations, healthcare settings, and providers, at both the patient and provider level. The focus of her clinical activities has encompassed evaluation of patients referred for genetic risk assessment for inherited cancer predisposition. She is also the Vice Chair of the National Comprehensive Cancer Network Genetics/Familial Guidelines Committee for Breast, Ovarian and Pancreatic Cancer; as well as the Editor-in-Chief for the National Cancer Institute’s Cancer Genetics PDQ Editorial Board.

Laura Amendola, MS, CGC

Clinical Associate Professor, Division of Medical Genetics, University of Washington

Laura Amendola has been a research genetic counselor at the University of Washington since 2012 where she contributes to and leads local and national research projects as part of several NHGRI-funded consortia. Laura has held leadership roles in the development, implementation and outcomes evaluation for programs implementing genomic sequencing for patients at risk for hereditary cancer. She is trained to implement a genetic counseling approach to effectively communicate and engage with patients from traditionally underserved populations in genomics. Prior to joining the University of Washington, Laura provided clinical counseling for patients across a range of indications including prenatal, pediatric, hereditary cancer and adult genetics. Pronouns: She/Her/Hers

Shoumita Dasgupta, PhD

Boston University, Professor of Medicine

Dr. Dasgupta is a scientist educator whose significant scholarly contributions center around curriculum design, teaching, and service. She is a Professor of Medicine and an Assistant Dean of Admissions with a demonstrated history of working in a diverse and inclusive higher education environment. Dr. Dasgupta has leveraged her expertise in basic and medical genetics and genomics, graduate education, and medical education to transform and advance the clinical and scientific training of MD and PhD students at Boston University, nationally, and internationally. Her passion for genetics, genomic medicine, diversity and inclusion, and mentoring allow her to serve as a supportive and creative leader in the field.

Justin Hentges, MPP

Chief Financial and Management Officer and Acting Chief Engagement Officer for the All of Us Research Program, NIH

Prior to joining All of Us, Justin served as the senior advisor for accountability and oversight to the Assistant Secretary for Financial Resources (ASFR) at the Department of Health and Human Services. During his almost four years in this role, Justin was an integral part of the Department’s response to Congress, the Government Accountability Office, and oversight from the Office of Inspector General; the implementation of major pieces of legislation, including the Federal Information Technology Acquisition Reform Act; and the planning for the 2017 presidential administration transition. Justin also served as an active member of the HHS LGBT Policy Coordinating Committee. Justin began his federal career at the NIH in the Administrative Fellows Program, a two-year administrative leadership training program. During his federal career, he also served as a budget analyst for the National Institute of Dental and Craniofacial Research, as a program analyst in the ASFR Office of Budget, and as the Special Assistant to the NIH Deputy Director. While Special Assistant, Justin was the lead staff for the Advisory Committee to the Director Working Group on Diversity in the Biomedical Research Workforce. Justin has a Bachelor of Arts in political science and economics from the University of Wisconsin-Eau Claire and a Master of Public Policy from George Mason University. Justin lives in D.C. with his dog, Luna.

Financial Disclosures

Educational Credit

Accreditation Statement

The American College of Medical Genetics and Genomics is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.

Designation Statement

The American College of Medical Genetics and Genomics designates this live activity for a maximum of 3.5 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

HIPAA Compliance

The ACMG supports medical information privacy.  While the ACMG is not a “covered entity” under HIPAA 1996 and therefore is not required to meet these standards, ACMG wishes to take reasonable steps to ensure that the presentation of individually identifiable health information at ACMG-sponsored events has been properly authorized.  All presenters have completed a form indicating whether they intend to present any form of individually identifiable healthcare information.  If so, they were asked either to attest that a HIPAA-compliant consent form is on file at their institution, or to send ACMG a copy of the ACMG HIPAA compliance form. This information is on record at the ACMG Administrative Office and will be made available on request.

Content Validation

ACMG follows the ACCME policy on Content Validation for CME activities, which requires:

Content Validation and Fair Balance

1. ACMG follows the ACCME policy on Content Validation for CME activities, which requires:

1. All recommendations involving clinical medicine must be based on evidence that is accepted within the profession of medicine as adequate justification for their indications and contraindications in the care of patients.
2. All scientific research referred to, reported or used in CME in support or justification of patient care recommendations must conform to the generally accepted standards of experimental design, data collection and analysis.

2. Activities that fall outside the definition of CME/CE; “Educational activities that serve to maintain, develop, or increase the knowledge, skills, and professional performance and relationships that a physician uses to provide services for patients, the public, or the profession” (source: ACCME and AMA) will not be certified for credit. CME activities that promote recommendations, treatment, or manners of practicing medicine or pharmacy that are not within the definition of CME/CE or, are known to have risks or dangers that outweigh the benefits or, are known to be ineffective in the treatment of patients.
3. Presentations and CME/CE activity materials must give a balanced view of therapeutic options; use of generic names will contribute to this impartiality.  If the CME/CE educational materials or content includes trade names, where available, trade names from several companies must be used.

Off-label Uses of Products

When an off-label use of a product, or an investigational use not yet approved for any purpose, is discussed during an educational activity, the accredited sponsor shall require the speaker to disclose that the product is not labeled for the use under discussion, or that the product is still investigational. Discussions of such uses shall focus on those uses that have been subject of objective investigation.

Disclaimer

The ACMG does not endorse, or recommend the use of this educational program to make patient diagnoses, particular by individuals not trained in medical genetics. Adherence to the information provided in these programs does not necessarily ensure a successful diagnostic outcome. The program should not be considered inclusive of all proper procedures and tests or exclusive of other procedures and tests that are reasonably directed at obtaining the same results. In determining the propriety of any specific procedure or test, a healthcare provider should apply his or her own professional judgment to the specific clinical circumstances presented by the individual patient or specimen.