Perspectives in Biology and Medicine

Dignity of risk is a simple concept that is surprisingly hard to enact, honor, and prioritize in health care. The term was coined 50 years ago by Robert Perske in an article entitled "The Dignity of Risk and the Mentally Retarded" (1972). And as I have written in "Discharge Decisions and the Dignity of Risk" (2015), "the concept involves respect for persons, self-determination, and attempts to minimize paternalism or parentalism" (7). Most simply, the dignity of risk embraces respecting or honoring an individual's choices or decisions even in the face of potential harms.

The central tension between safety/protection and autonomy/self-determination is at the core of the concept, but it also involves appraisals, judgments, varying ways of knowing, evidentiary standards, and diverse definitions of risk. Respect for persons and their potentially risky choices are also about social justice, particularly in a world full of inequities, historical injustices, and human biases. The dignity of risk has implications and applications in clinical care, research, law, and policy. It encompasses people with intellectual and developmental disabilities, as Perske observed, but also other marginalized groups. It applies to diverse areas of medical practice, including rehabilitation, hospital medicine, pediatrics, geriatrics, and reproductive medicine (for a discussion of regret and dignity of risk, see Watson 2014), and also to notions of risk in various cultural contexts. [End Page 157]

The COVID-19 pandemic has recently underscored deeply entrenched health inequities in the United States. Explorations of dignity of risk may contribute to a more complex understanding of the ways biases and access impact our understanding of risk. On the 50th anniversary of Perske's groundbreaking article, this special issue of Perspectives in Biology and Medicine engages with, thinks through, and delves into the concept of the dignity of risk.

First, a word about Robert Perske (1927–2018). According to his obituary in the Darien Times: "He began his career as an ordained Methodist minister, serving as chaplain at Kansas Neurological Institute, a state institution for boys and girls with intellectual disabilities. … He authored 16 books (many illustrated by his wife, Martha) and countless articles, all calling for a fairer and richer social justice for persons with disabilities." A website focused on Perske's contributions (www.robertperske.com) notes that

he joined volunteer organizations fighting to get persons with disabilities out of institutions and back into regular neighborhoods. During these community-based efforts, Perske slowly metamorphosed into becoming a street-courtand-prison worker with persons having intellectually disabilities who suddenly found themselves in big trouble with the law.

He is perhaps most well-known for advocating for prisoners with intellectual disabilities who had confessed to crimes they had not committed. In this Special Issue, we amplify and extend the reach of his powerful and consistent legacy of working for justice and equity.

When Perske first wrote about the dignity of risk, he was the Executive Director of the Greater Omaha Association for Retarded Children. He had completed a study tour in Sweden and Denmark, where he observed innovative programs that were being tried and questioned the American approach of what he saw as overprotection. He wrote,

Everyday there is a possibility of being thrown up against a situation where we may have to risk everything, even our lives. This is the real world. We must work to develop every human resource within us in order to prepare for these days. To deny any retarded person his fair share of risk experiences is to further cripple him for healthy living. Mentally retarded persons, may, can, will, and should respond to risk with full human dignity and courage.

(Perske 1972, 26)

While the language we use has changed over the past 50 years, and laws such as the Americans with Disabilities Act have been enacted, a consistent and thoughtful practice of respecting the dignity of risk remains elusive. I first learned of this sticky and valuable concept about 16 years ago, and it emerges and reemerges through iterations of the work I do as a clinical ethicist trained as a clinical/community psychologist. There is scant academic literature on the...