Proposed Human Subjects Language Changes: Are Physically Disabled People an Automatically and Categorically “Vulnerable Population?”

PROPOSED HUMAN SUBJECTS LANGUAGE CHANGES

Are Physically Disabled People an Automatically and Categorically

“Vulnerable Population?”

Compiled and Organized by Cassandra Evans, Stony Brook Doctoral Student, Supervised by Pamela Block, Associate Professor, Stony Brook University

“Salient Points Summary” and Bullet Points:

The proposed change to routinely place “physically disabled individuals” into the examples of “vulnerable populations” within the human research regulations cause researchers and disability advocates to take long pause.

In general, people who are identified—self-proclaimed or by community perception—as having a physical disability (or mobility, sensory or communication disability or impairment) are no more at risk for abuse in participating in non-medical research than non-disabled people. Therefore, they should not be automatically considered vulnerable.  A more productive approach would be to consider those individuals as “at-risk” or vulnerable if they cannot easily consent or might be manipulated or coerced, as in the case of children, prisoners or some cognitively disabled.

There is little in “physical disability” (or mobility, sensory, or communication disability or impairment) that makes an individual particularly vulnerable.  Legislation like the Americans with Disabilities Act (ADA) works to lessen the barriers that prevent participation in all life activities, and the very basis of ADA work is that there is nothing inherently vulnerable in physical disability (or mobility, sensory or communication disability or impairment). When laws recognize individuals with disabilities as fully participating citizens, they can be empowered to live full and rich lives. Language change that casts people as “vulnerable” or “weak” based on disability or impairment traces a step backward—a way of affirming negativity and stigma when the law and many aspects of society have moved on from this and no longer regards individuals with disabilities as liabilities.

That fight is still to be won for people with some disabilities and impairments, and for poor people in general, but the end result is still the same: lack of resources and information makes people vulnerable, rarely their particular physical, sensory or mental disability. Therefore, it is counterproductive to class “people with physical disabilities” as inherently vulnerable or susceptible to unethical research. 

The following represents shared philosophies on how to consider a world where all people have intrinsic value they can share:

v Research must consider individual vulnerability, consent procedures, and overall research protocols in the context of the individual’s daily sociocultural context and with the application of best practices for personal assistance services, augmentative and alternative communication (AAC), and other possible support that meet or exceed the individual’s usual experience.

v The intent to protect certain populations, who are more likely to be harmed (physically or mentally), as research participants by ensuring particular access and accommodations are part of the proper methods and practices in any research study.  A physically disabled person’s (or someone with a mobility, sensory or communication disability or impairment) ability to understand and participate in a research study is not impacted by their disability, nor are they more susceptible to any more harm than the average, non-disabled person, unless they have co-occurring disabilities like intellectual disabilities, in which case, is a separate issue.

v Diagnoses or global categories tell us almost nothing about individual vulnerability or ability to consent.

v Lumping children and “people with physical disabilities: together in one umbrella category of “vulnerable populations” is ignoring the particular nuances of each population and suggesting that they have the same needs and concerns, which they have not.

v If researchers are concerned about vulnerability to misrepresentation, then a community-level harm is at stake—not an individual harm to the person with a physical disability. 

v “Physical” versus non-physical disabilities are not useful binaries. Additionally, physical disability is not a helpful category; it can be confused with mobility impairment.  Neither term captures the nuances of sensory or communication disability or impairments either.  In any case, physical disabilities and mobility impairments are typically visible to the eye, so stigmatization, stereotyping, prejudice, and misrepresentation are more immediate.  However, this discrimination does not automatically and categorically predispose an individual to “harm” from research or unethical research.

v Many physical disabilities are not visible to the untrained eye:  sensory impairment, autoimmune disorders, seizure disorders and stroke are important examples in this regard.  Similarly the term "cognitive disorders" could include traumatic brain injury, learning disabilities, and intellectual disabilities, but not every individual in this group would be considered vulnerable to harm by research.

v Being physically, sensory, communicative, or mentally disabled can subject some people to vulnerability if they are not provided the same degree of access to resources, employment and education to which the rest of the population is.  However, that does not mean they are necessarily vulnerable.  This has nothing to do with the persons themselves, but rather to the environment and the imposition it places upon people with physical disabilities.

v Categorizing an entire group of individuals—those with “physical disabilities”—into a group of “vulnerable” can also be in and of itself an act of demoralization and infantilization.  Traditionally examples of groups that need protective care have been pregnant women, children and prisoners (those who had a history of risk for abuse and potential harm), but this caution is mainly warranted in biomedical research fields.

v The focus on "ability to consent" and "power to resist manipulation" is the most helpful dividing line, not disability or impairment categories. Consent and autonomy are the most important criteria, and using familiar disability labels/categories would needlessly exclude human subjects (and reduce the chance for research on disabled people).

         

List of Contributors:

Pamela Block, Stony Brook University

Allison Carey, Shippensburg University

Cassandra Evans, Stony Brook University

Lakshmi Fjord, University of Virginia

Elaine Gerber, Montclair State University

Wendy Harbour, Association on Higher Education and Disability

Allison Hitt

Jesse Kaysen, Civic Activist & Independent Scholar, Madison, Wisconsin

Devva Kasnitz, City University of New York

Petra Kuppers, University of Michigan

Cara Liebowitz, City University of New York

Caesar Morales

Mike Morrissey, Texas Tech University

Arielle Silverman, University of Washington

Amy Smith, City University of New York

Phil Smith, Eastern Michigan University

Magda Szaboda, Lancaster University and the Polish Academy of Sciences, Disabled Women’s Association (ONE).