The Genetics of Disability Rights & Ethics - A DEI Committee Sponsored Session
Educational Credits are not offered

Session Description

From the Centers for Disease Control and Prevention (CDC) Disability and Health Data System, 61 million adults in the United States (US) live with a disability1. This translates to 26% (or 1 in 4) adults in the US having an impairment in their body structure or function or mental functioning, an activity limitation, or participation restrictions in normal daily activities, the three dimensions by which disability is defined according to the World Health Organization2. Despite the implementation of federal civil rights laws such as the Americans with Disabilities Act (ADA) of 1990, the ADA Amendments Act of 2008, and provisions of the Patient Protection and Affordable Care Act in 2010, people with disabilities in the US are designated as a health disparity population3 and are more likely to report poor health and experience higher rates of chronic health conditions compared to nondisabled people4, the latest example being the disproportionate mortality of the disabled population during the COVID-19 pandemic5. Among factors that may contribute to health disparities are the attitudes amongst medical professionals towards people with disabilities' perceived quality of life, raising concerns about the role of ableism in healthcare and the understanding of medical vs social models of disability. The way in which society and healthcare professionals conceptualize disability is particularly relevant to the medical genetics field, where an ethically complex relationship exists between the knowledge of genetics and disability for clinical diagnosis, management, and intervention. This session will outline the many intersections of disability rights and ethics in the genetic and genomic research and medical field, focusing on ableist attitudes, beliefs, and biases; social justice; workforce, research, and clinical ethics committees' representation; prenatal testing; genetic resources; and challenges and trauma of individuals with disabilities and their families. This session is sponsored by the American College of Medical Genetics and Genomics (ACMG) Diversity, Equity, and Inclusion (DEI) Committee, and is intended to be a medium for establishing a genuine dialogue between the medical genetics and disability communities and for meeting attendees to consider the views of people with disabilities in their clinical practice.

Learning Objectives

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

• Describe the concepts of disability inclusion and equity.
• Describe preferred language for disability to improve care of individuals with disabilities and their families.
• Describe the disability paradox and its fundamental challenges to the practice of clinical genetics.
• Examine how the stories we tell about who we are have an impact on how we react to emerging genetic technologies.

Target Audience

All healthcare professionals interested in the diagnosis, management, treatment, and prevention of genetic conditions and increasing their understanding of the genetic basis of common, chronic health problems affecting both children and adults will find the programming applicable to their practice. The ACMG Annual Meeting is targeted for the following professionals:

• Medical and clinical geneticists; genetic counselors; pediatric, obstetric, and maternal-fetal specialists; and all medical practitioners who are providing comprehensive diagnostic, management, and counseling services for patients with, or at risk for, genetically influenced health problems.
• Laboratory directors and technicians who conduct genetic testing.
• Researchers involved in the discovery of genetic disorders and treatments.
• Clinical, laboratory and research trainees of genetics and all biomedical sciences.
• Any healthcare and public health professionals who have an interest in medical and clinical genetics and genomics.
• Advocates for patients with genetic conditions and their families.

Presentations:

• A Parent and Professional Perspective on the Importance of Disability Inclusion and Equity
• The Evolution of Language about Disability and the Way we Make sense of Disability in our World
• Ethical, Legal, and Social Implications of Genetics and Genomics in Disability
• Narrative, Identity, and the Ethics of Choosing Disability

Moderators:

Andrea Schelhaas, MS, CGC

Nemours Children's Hospital, Skeletal Dysplasia Program

Stephanie Meredith, MA

University of Kentucky

Faculty:

Kara Ayers, PhD

University of Cincinnati College of Medicine

Joseph Stramondo, PhD

San Diego State University

Stephanie Meredith, MA

University of Kentucky

Kevin Mintz, PhD

Stanford University, Center for Biomedical Ethics