Perspectives in Biology and Medicine

abstract:

The dignity of risk implies respect for individuals' right to make their own decisions, to participate in a broad range of desired activities, even if those activities have risk, and to expose themselves to potential consequences or learning opportunities. Historically, a more paternalistic approach, done as a benevolent assurance of safety, has been taken with individuals with intellectual disabilities. While optimizing safety, this approach can limit opportunity and, more importantly, limit the dignity of the individual. However, the concern for safety and the sense of responsibility to keep individuals with intellectual disabilities from harm is solidly entrenched and is not without some merit. "Supported decision-making" can offer an alternative to guardianship for some individuals, providing structured processes to enhance full participation. Strategies to involve individuals with intellectual disabilities in their own decision-making and to optimize the safety of those decisions include expanding the discussion of the concept of dignity of risk with family members and care providers of individuals with intellectual disabilities before they turn 18 years old; providing social-skills training and other educational opportunities that promote the likelihood of success in activities and decision-making; and maintaining guardrails when needed to prevent serious harms.