Final Report Released: Medical Futility and Disability Bias
November 22, 2019
Developed in Partnership with DREDF
Despite the growing consensus that disability is a normal part of the human experience, the lives of people with disabilities are routinely devalued in medical decision-making. Negative biases and inaccurate assumptions about disabled people persist. In medical situations, these biases can have serious and even deadly consequences.
Beginning on September 25, the National Council on Disability (NCD) is releasing a series of reports on bioethics and disability. The five reports were developed through a cooperative agreement with the Disability Rights Education & Defense Fund (DREDF), which appreciates and acknowledges the valued work of our partners, the Autistic Self Advocacy Network, the Bazelon Center for Mental Health Law and Not Dead Yet, in creating the series.
Each report examines the status and future of how a variety of key issue areas – including organ donation, assisted suicide laws, genetic testing, systems such as Quality Adjusted Life Years, and assumptions about medical futility – are developing due to technological and scientific advances as well as legal changes and healthcare delivery. A combination of original research, stakeholder and scholar interviews, literature reviews, reviews of media reports, and legal analysis is used to examine each topic. Each report includes findings and makes recommendations to lawmakers and policymakers that we hope will ensure that the lives of people with disabilities are valued on an equal and nondiscriminatory basis with all others.
Release Dates, Titles and Subject Areas
- September 25, 2019
Organ Transplant Discrimination Against People with Disabilities
(PDF) (DOC) - October 9, 2019
The Danger of Assisted Suicide Laws
(PDF) (DOC) - October 23, 2019
Genetic Testing and the Rush to Perfection
(PDF) (DOC) - November 6, 2019
Quality-Adjusted Life Years and the Devaluation of Life with a Disability
(PDF) (DOC) - November 20, 2019
Medical Futility and Disability Bias
(PDF) (DOC)
The Bioethics and Disability Report Series on NCD’s website.