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The Genetics of Disability Rights & Ethics - A DEI Committee Sponsored Session

15 Mar 2024
Venue: Metro Toronto Convention Center
Meeting Room: Exhibit Hall FG
Health Services & Implementation
  • Accredited:
    • Accredited
  • Primary Categories:
    • Health Care Inequities and health disparities
  • Secondary Categories:
    • Health Care Inequities and health disparities
  • Level of Learner:
    • Intermediate
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.
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Learning Objectives

  1. Expand the understanding of disability rights and ethics to provide improved public and family-centered care
  2. Describe the impact of ableist views in prenatal testing, workforce representation and drafting of organization guidelines
  3. Outline the impact of medical vs social models of disability on healthcare disparities
  4. Describe preferred language for disability to improve care of individuals with disabilities and their families

Agenda

  • Andrea J. Schelhaas, MS, CGC
    Moderator; Introduction
    3:30 PM – 3:35 PM
  • Stephanie Meredith, MA
    A Parent and Professional Perspective on the Importance of Disability Inclusion and Equity
    3:35 PM – 3:40 PM
  • Kara B. Ayers, PhD
    The Evolution of Language about Disability and the Way we Make sense of Disability in our World
    3:40 PM – 4:00 PM
  • Kevin T. Mintz, PhD
    Ethical, Legal, and Social Implications of Genetics and Genomics in Disability
    4:00 PM – 4:20 PM
  • Joseph A. Stramondo, PhD
    Narrative, Identity, and the Ethics of Choosing Disability
    4:20 PM – 4:40 PM
  • Panel Discussion
    Panel Discussion and Q&A
    4:40 PM – 5:00 PM

Sponsors