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).
