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
2016 ◽  
Vol 11 (5) ◽  
pp. 424-438 ◽  
Author(s):  
Katherine E. McDonald ◽  
Nicole E. Conroy ◽  
Carolyn I. Kim ◽  
Emily J. LoBraico ◽  
Ellis M. Prather ◽  
...  

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.


2008 ◽  
Vol 113 (6) ◽  
pp. 466-478 ◽  
Author(s):  
Katherine E. McDonald ◽  
Christopher B. Keys ◽  
David B. Henry

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.


2020 ◽  
Author(s):  
Amy M Smith Slep ◽  
Richard E Heyman ◽  
Michael F Lorber ◽  
David J Linkh

Abstract Introduction We evaluated the effectiveness of New Orientation for Reducing Threats to Health from Secretive-problems That Affect Readiness (NORTH STAR), a community assessment, planning, and action framework to reduce the prevalence of suicidality, substance problems, intimate partner violence, and child abuse. Materials and Methods One-third of U.S. Air Force bases worldwide were randomly assigned to NORTH STAR (n = 12) or an assessment-and-feedback-only condition (n = 12). Two Air Force-wide, cross-sectional, anonymous, web-based surveys were conducted of randomly selected samples assessing risk/protective factors and outcomes. This study was reviewed and approved by the institutional review board at the investigators’ university and by the institutional review board at Fort Detrick. Results NORTH STAR, relative to control, bases experienced a 33% absolute risk reduction in hazardous drinking rates and cumulative risk, although, given the small number of bases, these effects were not statistically significant. Conclusions Given its relatively low cost, use of empirically supported light-touch interventions, and emphasis on sustainability with existing resources, NORTH STAR may be a useful system for prevention of a range of adult behavioral health problems that are difficult to impact.


2021 ◽  
Vol 12 ◽  
pp. 215013272110229
Author(s):  
Mostafa Abohelwa ◽  
Mohamed Elmassry ◽  
John Abdelmalek ◽  
Drew Payne ◽  
Kenneth Nugent

Background Coronavirus-2 (COVID-19) has caused a worldwide pandemic since December 2019. Since then, clinical trials with vaccines have been started and completed, and at present, 3 COVID-19 vaccines have been approved for use in the United States. Healthcare providers were among the first to get vaccinated, but the precise attitudes of healthcare workers toward vaccination are uncertain. Objective To understand residents and fellows’ attitudes toward vaccination and record any side effects after vaccination. Methods We conducted an anonymous survey that was open from 3-1-2021 to 3-12-2021 using distribution lists from the Graduate Medical Education office on the Lubbock campus of the Texas Tech University Health Sciences Center after getting approval from the Institutional Review Board (L21-088). Results Eighty-one residents and fellows (26.6% out of 304) responded to our survey. Among those who responded, 63 (77.8 %) were between 25 and 35 years old, and 41 (50.6%) were males. Seventy-seven (95.1%) received the vaccine (Pfizer-BioNTech), 78 (96.3%) reported that they supported vaccination, and 3 (3.7%) reported that they did not want vaccination. Eight members (9.8%) had tested positive for COVID-19 infection before vaccination, but only 1 (1.23%) had tested positive for COVID-19 antibodies. All residents and fellows reported side effects after the vaccination, including pain at the injection site (77; 100%), local redness (9; 11.6%), local swelling (13; 16.8%), fever (25; 32.5%), fatigue (25; 32.5%), chills (34; 44.1 %), headache (38; 49.4%). Conclusions Most medical trainees have a high interest in COVID-19 vaccination; however, a few reported that they did not want vaccination.


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