Bioethics and Disability Report Series
BACKGROUND AND SCOPE:
Despite the growing understanding that disability is a normal part of the human experience, the lives of persons with disabilities continue to be devalued in medical decision-making. Negative biases and inaccurate assumptions about the quality of life of a person with a disability are pervasive in U.S. society and can result in the devaluation and disparate treatment of people with disabilities, and in the medical context, these biases can have serious and even deadly consequences. In this series of reports on bioethics, the National Council on Disability will explore how people with disabilities are impacted by biases and assumptions in some of the most critical healthcare issues we face, including:
- Organ transplantation – People with disabilities are often denied equal access to organ transplants solely on the basis of their disability. This report examines the reasons for this and its impact. Additionally, the report explores how people with disabilities and their families can be pressured into organ donation.
- Physician-assisted suicide —This report provides an update to the previous NCD analysis of these laws and examines whether NCD’s early predictions about the effect of these laws was -- for instance, the ineffectiveness of purported safeguards -- correct.
- Genetic testing — This report examines the range of scientific, commercial, professional and social factors that converge around prenatal genetic testing and their effect on the lives of people with disabilities; and provides an update on the interaction between genetic testing and employment discrimination.
- Quality-adjusted life years (QALYs) — QALYs are a number that is used to represent the degree to which a drug or treatment extends and improves quality of life; insurance programs including Medicaid are increasingly interested in using QALYs to determine the value of treatments even though stakeholders fear they undervalue treatment that extend or improve the lives of people with disabilities. This report examines how the use of QALYs impacts people with disabilities and their access to care.
- Medical futility —Health care providers’ subjective judgments about whether a patient’s life is “worth living” often influences their decisions regarding whether to withdraw or withhold medical care. This report examines multiple perspectives on medical futility decisions relating to people with disabilities and analyzes how state and federal laws can be strengthened to prevent disability bias from impacting critical health care decisions.
Each report in the series examines how these areas are developing as a result of technological and scientific advances as well as changes to the law and healthcare delivery. A combination of original research, stakeholder and scholar interviews, literature reviews, reviews of media reports, and legal analysis where appropriate is used to examine each topic. As always, each report includes findings based on these thorough examinations and makes recommendations to lawmakers and policymakers that we hope will ensure the lives of people with disabilities are valued on an equal basis with others and that will allow for people with disabilities to make healthcare decisions in a non-coercive environment that respects dignity, privacy and autonomy.