Gatekeepers of Science: Attitudes Toward the Research Participation of Adults With Intellectual Disability

2008 ◽  
Vol 113 (6) ◽  
pp. 466-478 ◽  
Author(s):  
Katherine E. McDonald ◽  
Christopher B. Keys ◽  
David B. Henry
Keyword(s):  
Decision Making ◽  
Intellectual Disability ◽  
Individual Differences ◽  
Research Participation ◽  
Attitude Scale ◽  
Institutional Review Board ◽  
Science Attitudes ◽  
Disability Rights ◽  
Institutional Review ◽  
Participation In Research

Abstract Researchers and Institutional Review Board (IRB) members' attitudes influence scientific knowledge about individuals with intellectual disability. We recruited 260 intellectual disability researchers and IRB members to develop a measure of attitudes toward the research participation of adults with intellectual disability, the Participation in Research Attitude Scale. Findings suggest three conceptual domains: Opportunity and Choice, Help in Decision Making, and Beneficence. We also examined individual differences in attitudes and the relationships between general and specific attitudes. In general, intellectual disability researchers and those with closer relationships to individuals with disabilities had attitudes consistent with disability-rights principles. Some dimensions of global attitudes toward adults with intellectual disability predicted more specific attitudes toward their research participation. Implications are discussed.

Differing Understandings of Informed Consent Held by Research Institutions, People with Intellectual Disability, and Guardians

2019 ◽  
pp. 27-38
Author(s):  
Britteny M. Howell ◽  
Karrie A. Shogren
Keyword(s):  
Intellectual Disability ◽  
Informed Consent ◽  
Research Participation ◽  
Research Literature ◽  
Self Determination ◽  
Institutional Review Board ◽  
Research Institutions ◽  
Ethical Research ◽  
Institutional Review ◽  
Participation In Research

Increasing participation of people with intellectual disability (ID) is necessary for inclusive, ethical research that reduces persistent disparities in representation. However, many adults with ID have guardians, who must consent to research involvement. Researchers have found that guardians are less likely to provide consent than the person with ID, often resulting in lower participation. Institutional Review Board (IRB) members also have been found to hold very cautious views regarding research participation compared to the views of people with ID or their guardians. This chapter reviews issues that emerge because of differing views of research participation held by IRB members, guardians, and people with ID that may unnecessarily limit the participation of people with ID in research. The research literature on these barriers is summarized along with the authors’ own experiences with alternative participatory strategies that have the potential to increase both self-determination and participation in research for people with ID.

scholarly journals Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability

2016 ◽  
Vol 11 (5) ◽  
pp. 424-438 ◽  
Author(s):  
Katherine E. McDonald ◽  
Nicole E. Conroy ◽  
Carolyn I. Kim ◽  
Emily J. LoBraico ◽  
Ellis M. Prather ◽  
...  
Keyword(s):  
Decision Making ◽  
Intellectual Disability ◽  
Service Providers ◽  
Human Subjects ◽  
Well Being ◽  
Institutional Review Board ◽  
Human Subjects Research ◽  
Disability Service ◽  
Disability Service Providers ◽  
Institutional Review

Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public’s views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.

scholarly journals What's the Harm? Harms in Research With Adults With Intellectual Disability

2017 ◽  
Vol 122 (1) ◽  
pp. 78-92 ◽  
Author(s):  
Katherine E. McDonald ◽  
Nicole E. Conroy ◽  
Robert S. Olick ◽  
The Project ETHICS Expert Panel
Keyword(s):  
Intellectual Disability ◽  
Service Providers ◽  
Scientific Progress ◽  
Research Participation ◽  
Institutional Review Board ◽  
Board Members ◽  
Ethical Research ◽  
Disability Service Providers ◽  
Participation Decision ◽  
Institutional Review

Abstract Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability.

How Persons with Intellectual Disabilities Are Fighting for Decision-Making Rights

2022 ◽  
Vol 121 (831) ◽  
pp. 30-35
Author(s):  
Chester A. Finn ◽  
Matthew S. Smith ◽  
Michael Ashley Stein
Keyword(s):  
Decision Making ◽  
Intellectual Disability ◽  
United Nations ◽  
Intellectual Disabilities ◽  
Legal Capacity ◽  
Disability Rights ◽  
Persons With Disabilities ◽  
New Approach ◽  
The United Nations

Paternalistic attitudes about what is in the interests of a person with an intellectual disability have long led to abuses, and are embedded in the guardianship laws still in place in most countries. Self-advocates, who identify as people with intellectual or other disabilities and are committed to demanding their rights and educating others about them, are calling for a new approach. They have found support for reforms in the Convention on the Rights of Persons with Disabilities, adopted by the United Nations in 2006 and since acceded to by 182 countries. By supporting the fundamental right of those with disabilities to make decisions, it has enabled disability rights advocates to successfully challenge legal capacity restrictions and push for “supported decision-making.”

Payments for Participation of Children in Research

2018 ◽  
pp. 244-263
Author(s):  
Douglas S. Diekema
Keyword(s):  
Decision Making ◽  
Research Participation ◽  
Ethical Considerations ◽  
Parental Decision ◽  
Research Participants ◽  
Ethical Implications ◽  
Parental Decision Making ◽  
Participation In Research ◽  
Research Studies ◽  
Current Practices

Providing payment to those who participate is common practice for research studies involving both children and adults. While there may be good reasons for providing payment for research participation, there are also reasons to be concerned about the practice, especially when the subjects are children and the payment has the potential to distort parental decision-making by tempting parents to consider issues other than the welfare of their child. This chapter examines the ethical implications of providing payment to children and their parents for participation in research. After a brief survey of current practices regarding payments to research participants, the chapter will examine the distinct kinds of payments offered to research participants and their parents (Those intended to reimburse expenses and those intended to induce participation), evaluate the ethical considerations relevant to each kind of payment, and make some final recommendations concerning the provision of payments for research involving children.

scholarly journals Surrogate consent for research involving adults with impaired decision making: Survey of Institutional Review Board practices

2010 ◽  
Vol 38 (11) ◽  
pp. 2146-2154 ◽  
Author(s):  
Michelle Ng Gong ◽  
Gary Winkel ◽  
Rosamond Rhodes ◽  
Lynne D. Richardson ◽  
Jeffrey H. Silverstein
Keyword(s):  
Decision Making ◽  
Institutional Review Board ◽  
Institutional Review ◽  
Surrogate Consent

scholarly journals Is It Worth It? Benefits in Research With Adults With Intellectual Disability

2016 ◽  
Vol 54 (6) ◽  
pp. 440-453 ◽  
Author(s):  
Katherine E. McDonald ◽  
Nicole E. Conroy ◽  
Robert S. Olick ◽  
Keyword(s):  
Intellectual Disability ◽  
Service Providers ◽  
Research Policy ◽  
Research Participation ◽  
Policy And Practice ◽  
Societal Benefits ◽  
Institutional Review ◽  
Direct Benefits ◽  
Participation Research ◽  
Interest In Research

Abstract Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family and friends, service providers, researchers, and institutional review board members. We found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them. Other stakeholders generally see less value in direct benefits and predict more tempered interest in research participation as compared to adults with intellectual disability. To promote respectful research participation, research policy and practice should incorporate the views of adults with intellectual disability.

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