Source: http://dsq-sds.org/article/view/6062/5188
Timestamp: 2019-04-25 07:46:44+00:00

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Equal access is a basic tenet of American pedagogy, and a dearly held American value. This is reflected in the United States Constitution and legal statutes such as Brown v. Board of Education of Topeka (347 U. S. § 483, 1954) and Sections 504 (29 U.S.C. § 701) and 508 (29 U.S.C. § 794d) of the Rehabilitation Act of 1973. However, it is not as apparent in our public educational system despite the efforts of many hard working well-intentioned advocates (Blanchett, Mumford, & Beachum, 2005). Understanding and rectifying this disconnect falls on professionals in education, law, and politics. The ultimate goal is a normative universal design of environments (Garske, 2013; Sprong, Dallas, & Upton, 2013) that naturally incorporate range of abilities rather than abled and disabled, that renders accommodation and inclusion anachronistic, and that frees each of us from artificial limitations that impede achievement. The IRB and disability legislation interface is an example, but the strategy we suggest, that is a general move toward universal design, is more widely applicable and can help us exemplify cherished values and human rights.
According to the U.S. Census Bureau (Brault, 2012), in 2010 56.7 million, or nearly one in five adults in the United States had a disability. According to the National Center for Education Statistics (NCES), reported in Raue and Lewis (2011), 99 percent of public 2-year and 4-year postsecondary institutions in 2008-2009 enrolled students with disabilities. In 2011-2012, 11 percent of postsecondary students were persons with disabilities (NCES, n.d.). The National Center for College Students with Disabilities estimates four percent of faculty have disabilities (Grigley, 2017).
The disability rights movement with its focus on inclusion ignited during the 1970s, and influenced court decisions, legislation, and policies that changed society forever (Fleisher & Zames, 2001; Nielsen, 2012; Stroman, 2003). Inclusion, defined as "putting the concept and practice of diversity into action by creating an environment of involvement, respect, and connection" (Jordan, 2011), is supported by legal mandates, and these can be incorporated in educational policies and procedures as we move toward universal design. Although there are numerous examples, the three most transformative legislative responses were the Rehabilitation Act of 1973 (Pub. L. 93-348), Education for All Handicapped Children's Act of 1975 (EAHCA) (PL 94-142), and the Americans With Disabilities Act of 1990 (ADA) (Pub. L No. 101-336, 104 Stat 328, 1990).
Research is an overlooked aspect of educational policy for persons with disabilities, specifically equal access to conducting or participating in research studies. Title II and Title III of the ADA do not specifically address research; however, there are several places referring to "broad coverage" and "an equal opportunity to benefit from all of their programs, services, and activities" (Americans With Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 328, 1990). Integration of individuals with disabilities into mainstream society is fundamental to the purposes of the ADA. How can this be achieved if there are no policies in place to ensure that persons with disabilities are aware of or able to participate in or conduct research?
The research process is a critical determinant of what and how our general fund of knowledge changes over time. Similarly to other researchers who investigated the underrepresentation of minorities and women (Epstein, 2007), individuals with disabilities are an underrepresented group in terms of adding their voices. What and how research is conducted is ultimately the province of the Institutional Review Board's (IRB) approval process, hence our interest in the procedures followed by this influential group.
Institutional review developed as a reaction against highly publicized egregious research practices and associated threats of public backlash, particularly to the Tuskegee, Alabama syphilis experiments (Reverby, 2009). Informed consent, the right of research subjects to have enough information to be true volunteers, and protection from harm, especially of "vulnerable populations" (e.g., children, prisoners), became a central focus. The primary roles of IRBs are protecting research participants from harm and researchers and institutions from legal liability. Legislation added pressure to fulfill these roles.
Notable legislation included The Nuremberg Code after World War II; the 1964 Declaration of Helsinki (most recently updated in 2013 by the World Medical Association, WMA); the United States Surgeon General's requirement of prior review of proposed studies (1966, revised in 1969 and 1974); and the National Research Act of 1974 (P.L. 93-348). In addition, the 1979 Belmont Report; a 1981 revision by the Department of Health and Human Services (DHHS) and the Food and Drug Administration (FDA); a 1991 revision to the DHHS and the FDA; and the Federal Policy for the Protection of Human Subjects known as the Common Rule (80 FR 53931), amended in 2005, significantly influenced IRB procedures. See Schrag (2010) and Stark (2012) for histories of the development of the IRB system in the United States, and Cohen and Lynch (2014) for public input on updating the Common Rule.
An updated Common Rule, called the "final rule" (82 FR 7149, Jan. 19, 2017; Sept. 18, 2017), with a January 19, 2018 effective date, was delayed until July 19, 2018, and renamed the "interim final rule" (IFR). On June 18, 2018, HHS changed the general compliance date to January 21, 2019, except for the single IRB rules, which apply January 20, 2020. Further delays are possible, due to mixed reviews of the IFR, as well as requests to scrap the 40-year old Belmont Report and form an independent national commission to write a new version that reflects current ethical and research concerns. We contend that disability rights are a concern that must be included in the final product.
These updates purport to provide better protection for research participants while modernizing rules and reducing ambiguity for investigators. However, none of these changes directly addresses accessibility, though there are indirect indications open to interpretation. For example, the IFR refers to the "equitable selection of subjects" (§ __.111(a)(3), 2017). We assert that a study that recruits from a general student population cannot discriminate in favor of an ablest subgroup. Ignoring accessibility is a form of discrimination, and does not fulfill the equitable selection criterion. The IRB process can be pivotal to ensuring nondiscrimination in this regard. Individual choice, not research design, is the salient factor in participation decisions, including those that offer alternatives to research participation as options. Separate but equal is not a tenable stance.
In addition, broader participation represents populations more accurately, which allows researchers to generalize their findings more confidently. Not doing this could introduce a possible confound that should be listed as a limitation inherent in the research design, analogously to excluding any other minority. Accessibility is a key component of engaging more people in research, reducing discrimination, and ensuring that research samples reflect the populations they represent.
We propose that revisions must contain explicit statements that allied standards and laws extend to all potential researchers and research participants regardless of ability status. We further assert that students and faculty at publicly funded postsecondary educational institutions have a legal right to equal access to conducting and participating in research, while all students and faculty have an ethical right. It is worth noting that individual institutions can go beyond the requirements of the ADA, and apply ethical and moral obligations.
The IRB process reflects ethical standards such as the 1979 Belmont Report's respect, beneficence, and justice, codified by law (e.g., National Research Act, 1974; ADA, 1990). According to the The Belmont Report (1979), respect for persons consists of individuals being treated as autonomous as well as special protection for individuals with reduced autonomy (Salganik, 2017). Therefore, the IRB spends considerable time reviewing informed consent documents to ensure that the information in the document is comprehensible and relevant to ensure that an individual's voluntary agreement is an educated decision. Beneficence comprises benefitting others while avoiding harm; therefore, the IRB ensures that researchers aim to have the best interest of the participant in experimentation by minimizing risk and maximizing benefits to the participant and society as a whole. We believe that this ethical principle applies to avoiding potential harm to persons unable to participate in the research process due solely to inaccessibility. Furthermore, society is harmed by the limitations in research design that can create confounds, sources of uncontrolled error that influence results (e.g., samples that do not represent the targeted populations), and limit intellectual contribution. Justice consists of fairness in terms of the "distribution of burdens and benefits of research" (Salganik, 2017, p. 298). Therefore, all individuals should bear the cost and reap the benefits of research. Fairness is undermined when it is weighted in favor of persons who are excluded from the ADA.
Lack of or inadequate policy to assure access to conducting or participating in research studies violates these tenets. For example, if students with disabilities are not able to conduct or participate in research, then the results of these studies will more than likely create a bias towards the needs, wants, and issues of people without disabilities and could cause harm to persons with disability in the form of isolation or feelings of ostracism. Overall, the result is that students with disabilities are not getting the advantages of a full college experience, and are incurring disadvantages such as weaker resumes for graduate school applications, and less understanding of the scientific basis of knowledge. In addition, explicit policies can help reduce barriers related to stigma, discrimination, and implicit bias embedded in ableism, through making inclusion normative.
Analogously, faculty are disadvantaged because barriers to conducting research may impede tenure and promotion efforts. Faculty professional development and identity, intellectual contributions, and overall involvement in their profession are limited without equal access to research opportunities. For example, inaccessible proposal submission systems can impede professional development, lower self-esteem, restrict research opportunities, and weaken faculty's ability to provide positive role models for students. Barriers can be overt, such as inadequate adaptive technology that barely meets minimum standards or buildings that are difficult to navigate, or covert, such as implicit messages to avoid confrontation or risk termination or other retribution.
Potential barriers faced by researchers with disabilities include inaccessible submission systems and incompatible technology. Individuals with disabilities who are interested in contributing to research by serving as a subject may find that recruitment efforts exclude them, and even when they are accepted as subjects, they may have difficulty with written or verbal instructions that are not modified for clarity (e.g., readability).
Whether conducting research or participating in research as a subject, the specific barriers they will face will vary greatly according to the specific disability, as well as the functional limitations imposed in response to disability. Barriers include lack of access to physical locations and the absence of proper accommodations for disabilities affecting mobility or dexterity (Anand & Sevak, 2017). In addition to physical restrictions, there are a number of barriers related to vision and hearing impairments. The Job Accommodation Network (JAN, 2018) states that research policies, procedures, and overall access for individuals with sensory disabilities should be provided in multiple formats. Some of the barriers for people who are blind or with vision loss can be reduced or eliminated by providing all written materials in large print and by developing web sites that adhere to Section 508. People who are deaf or who experience significant hearing losses can be accommodated by having sign language interpreters, transcripts, and captioning.
These disadvantages are forms of discrimination that are prohibited by law. For example, provisions in Title II, Prohibition Against Discrimination and Other Generally Applicable Provisions, state that no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of services, programs, or activities of a public entity, or be subjected to discrimination by any such entity (Discrimination, 42 U.S.C. §12132, 1990).
Title II of the ADA (42 U.S.C. 12131B65) applies to state and local government entities regardless of their size or receipt of federal funding, and, in subtitle A, protects qualified individuals with disabilities from discrimination on the basis of disability in all services, programs, and activities they provide (Americans With Disabilities Act, 1990). Title II extends the prohibition on discrimination established by section 504 of the Rehabilitation Act of 1973, as amended (29 U.S.C. 794). In other words, Title II mandates equal opportunity to benefit from all of the covered entities' programs, services, and activities (e.g., public education and employment) (42 U.S.C. §12182). Furthermore, public entities are not allowed to provide services or benefits to individuals with disabilities through programs that are separate or different, unless the separate programs are necessary to ensure that the benefits and services are equally effective. Even when separate programs are permitted, an individual with a disability still has the right to choose to participate in the regular program. For example, if research participation and alternatives are offered for course credit or extra credit, it is the student who has the right to decide which option to choose (i.e., each must be accessible).
Title III (42 U.S.C. 12181B89) prohibits discrimination on the basis of disability in the activities of places of public accommodation (businesses that are generally open to the public and that fall into one of twelve categories listed in the ADA, such as schools) (42 U.S.C. §12181B89). It further requires newly constructed or altered places of public accommodation as well as commercial facilities to comply with the ADA Standards. Public accommodations must comply with basic nondiscrimination requirements that prohibit exclusion, segregation, and unequal treatment. They also must comply with specific requirements related to architectural standards for new and altered buildings; reasonable modifications to policies, practices, and procedures; effective communication with people with hearing, vision, or speech disabilities; and other access requirements. A public accommodation must make reasonable modifications in its policies, practices, and procedures in order to accommodate individuals with disabilities (Americans With Disabilities Act of 1990, Title III, Public Accommodations and Commercial Facilities, 1990).
The provisions of the Higher Education Act of 1965 (HEA, P. L. 89-29), amended in 2008 as The Higher Education Opportunity Act (P. L. 110-315), require many physical and academic accommodations. The success of students with disabilities in higher education is dependent on a number of factors including the availability of accessible technology (Bigatel, Ragan, Kennan, & Redmond, 2012). Accessible technology is important to the success of faculty with disabilities as well. This extends to their ability to conduct and participate in research.
Under Section 504 of the Rehabilitation Act and the ADA (as amended, 29 U. S. C. § 794d), institutions of higher education are responsible for making their courses, campuses, activities, and services accessible to people with disabilities (Hackett & Bambang, 2005; Cook, Rumrill, & Tankersley, 2009). These laws, which apply to faculty and staff as well as students, include reasonable accommodations for full access to classes, curriculum, and academic activities (which we contend includes those related to research). In addition, Section 508 of the Rehabilitation Act requires that electronics and information technology are accessible to all individuals.
The IRB can play a pivotal role in modeling positive behavior by requiring equal opportunity for people with different abilities to participate in or conduct research. This opportunity directly impacts the educational experience of students and faculty. Individual IRBs have the authority and the backing of legislation to require that research studies they approve comply with accessibility mandates. This issue is another example of an invisible group, unintentional discrimination, and an opportunity to rectify an overlooked weakness in a process tasked with protection from harm. Direct experience serving on a university IRB and a dearth of literature on this specific topic in the prolific IRB literature, despite legislative mandates, led to our expectation of little or no evidence of accessibility concerns in postsecondary educational institutions' IRB policies.
The sample consisted of the 58 original land-grant universities in the U.S. Land-grant institutions were established when President Lincoln, after Congressional approval, signed The Morrill Act of 1862 into law. The 37th Congress authorized "donating public lands [or cash equivalent] to the several States and Territories which may provide colleges for the benefit of agriculture and mechanic arts," colloquially known as A & M (United States Statutes at Large, 1862). These are well-established highly respected universities with long histories, well-developed policies, and many tenure track faculty members. In addition, they are federally funded public universities that are required to maintain IRBs. Another advantage of using land grant universities as a research sample is they are located in each state and territory in the U.S, which helps control for possible regional differences.
Bradbard, Peters, & Caneva (2010) investigated web accessibility (i.e., ability to access the internet by those who cannot do so with traditional web browsers alone) policies at land-grant universities. They concluded that while most had a policy, most policies were significantly deficient, and many might result in lawsuits due to ADA violations. Many related questions remained unanswered, including whether these universities' IRB policies would hold up to scrutiny.
We obtained IRB policies and related information and materials from each land-grant university's website, downloaded them, and stored these in separate files. Two had no publically available online IRB policy information and one was under review, so the final sample included 55 land-grant universities. We applied the following keyword list to each document to locate references to disability-related information: disability, accommodation, modification, Section 508, Section 504, Americans with Disabilities Act, ADA, rehabilitation, accessibility, universal design, impairment, technology, readability, and usability. It seemed reasonable to expect that these keywords would locate relevant evidence if such existed.
Results showed that none of the schools in the sample included any of the keywords in their IRB policies to indicate a requirement for inclusive research design, such that students with disabilities would be members of the pool of potential research participants. One university mentioned ADA, but only as an example of the need for compliance with federal laws pertaining to medical records. We found other words in our keyword list, namely modification, accessibility, impairment, disability, Section 508, and technology, but they were used differently. For example, modification primarily referred to changes in protocols, impairment in the context of special populations, and technology in terms of maintaining software and hardware.
A review of the IRB policies of land-grant universities in the U.S. revealed no evidence of inclusive language regarding research participation. Possible reasons for this omission include lack of awareness of the potential for harm, such as restricted research opportunities and inability to add one's input to the data, or resistance to accepting this as an IRB responsibility. These results document an important addressable issue.
There are limitations inherent in our study, such as the sample included only land-grant universities, which may or may not be representative of postsecondary schools in the U.S. Future studies could include other categories and larger samples. In addition, this study focused on the U.S. Future studies could examine international policies and institutions, cognizant of increasing pressures toward globalization and expanding research partnerships (Bhattacharya & Shilpa, 2016). As an initial investigation of possible differences in policies, we located and downloaded online Ethics Review Committees' (ERC), South Africa's IRB equivalent, policies and related information in English for 14 of the 17 (three had no posted relevant information) public, traditional, and comprehensive universities in South Africa, and conducted our keyword search for evidence of inclusive language. We found no inclusive language to accommodate persons with disabilities who are part of general populations of potential research participants or faculty and students who are researchers (Milligan, Doss, & Tew-Washburn, 2017).
Data collection relied on publically posted information retrievable from websites. It is possible that relevant documents are password protected and not available to outsiders. In addition, although unlikely, individual IRB procedures might be more inclusive than their policies suggest. This is unlikely because policies have a tendency to confine behavior to that which is specified in them. In addition, accommodations are costly, and public universities are facing declining state funding, with concomitant pressures to reduce spending (Hastings, 2017). Another indication is that litigation is an ongoing significant threat, which suggests an area of weakness, namely, noncompliance with ADA requirements.
This study adds to institutional interest, including minimizing liability risk exposure and bolstering image, and promotes protection from harm by championing equal opportunity to participate in and conduct research. Examples of universities sued for ADA violations include Florida State University, where the National Federation of the Blind filed suit on behalf of two blind students against the university alleging that the Department of Mathematics discriminated against them by failing to provide them with appropriate accommodation. Not only did the suit result in required policy changes, but also a $75,000 payment by the school to each student (National Federation of the Blind, 2012). Similarly, The University of California at Berkeley was required to create new policies to improve provision of services and accommodations as well as update other policies to ensure technology updates are adequate to accommodate UC Berkeley students with disabilities (Disability Rights Advocates, 2013). These are just a couple of examples of a long list of similar instances showing the importance of taking preventative measures to ensure proper accommodation instead of waiting to be forced by a lawsuit into making the appropriate required changes to the school's policies to ensure inclusion and rid the institution of discrimination.
Not having equal access to research opportunities harms students and faculty. Faculty members at most universities and colleges are required to conduct research, and those with disabilities face disadvantages such as inaccessible websites, research protocols, and limitations in available software and hardware. Restricting these opportunities interferes with the ability to be a successful academic, whether student or faculty member. University service on committees is another requirement listed in faculty job descriptions. At many universities, it would be difficult for faculty with disabilities to serve on an IRB committee, due to inaccessible protocol materials and other accommodations deficits during meetings.
Students with disabilities also face restricted opportunities to serve as researchers. By law, everything in a university should be accessible in order to provide an inclusive environment of equal opportunity to students, staff, and faculty. Another challenge involving accessibility is developing solutions without a perception of "undue burden" on the system (e.g., health care or education) (Rosenbaum, 2007). We contend that our proposed changes do not impose an "undue burden" on post-secondary institutions, and that they are "reasonable accommodations" for a large enough group of people that they should be included in the institution's IRB as well as ADA policies. Institutions that do not revise their policies could face students who demand these accommodations, which could result in lawsuits.
Recommendations to rectify this identified weakness include adding an accessibility knowledgeable IRB member to each IRB committee to help ensure that applications, and other materials, such as informed consent documents and survey instruments, as well as procedures are in compliance with ADA and Section 508 legal requirements. This good faith effort could reduce litigation exposure, while increasing researchers' knowledge and skills related to inclusion and accessibility. IRBs routinely check appropriate reading levels and have strict grade level guidelines for research materials to match the target population, but do not have an analogous accessibility requirement. In addition, it is advisable for universities to develop a plan with a timetable to measure progress toward full accessibility, add training components, and check their websites periodically for accessibility, readability, and usability (e.g., WebAIM.org).
American values and legislation uphold the right to equal access to education in all of its aspects, and reasonable accommodations for qualified faculty and students in postsecondary institutions. These ethical and legal responsibilities to be inclusive extend to accessibility for researchers and research participants. The results of this study identified an area that is deficient in that regard, and provided recommendations for improvement. Many critics are focusing on ways to change the existing structure and process of IRB review. While laudable, that seems relegated to an aspirational wish list. In the interim, we recommend working within the existing structure and enforcing federal policies and statutory laws that are in place but overlooked, as a step toward equal opportunity in the research arena. Universities espouse social justice and conduct research on inequality and its amelioration. Here is a suggestion: Start with your IRB.
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