Echo's On-Demand course
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Availability
On-Demand
Cost
Member: C$10.00
Non-Member: C$50.00
Reduced: C$30.00
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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