scholarly journals Inconsistencies in institutional review board decisions: A proposal to regulate the decision-making process

2019 ◽  
Vol 120 (02) ◽  
pp. 95-101
Author(s):  
P. E. Ekmekci ◽  
M. D. Guner
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.


2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 28-28
Author(s):  
Ilona Fridman ◽  
Tanya Nikolova ◽  
Paul A. Glare ◽  
E. Tory Higgins

28 Background: Patients often continue chemotherapy at the end of life, decreasing their quality of life without prolonging survival. Because humans tend to make emotional choices rather than rational ones when considering unpleasant options, patients are likely to reject hospice and other forms of symptom-focused care (SFC) when it could be beneficial for them. We explored patients’ perspectives on how they choose between continuing cancer treatment and SFC. Methods: Semi-structured interviews with 20 patients recruited from palliative care clinics at Memorial Sloan Kettering Cancer Center (MSKCC). Interviews covered patients’ decision-making process regarding further chemotherapy vs. SFC. Interviewees gave verbal consent, the MSKCC Institutional Review Board granting a waiver. Results: Two key conditions were identified as necessary for patients to choose SFC. First, the patient accepts that further chemotherapy is not going to be beneficial to them. Second, the oncologist endorses the transition to SFC. Preliminary analysis of treatment choices at the time of interview (see Table) also found many of those who expected they would benefit from further treatment experienced negative emotions when SFC was recommended. Conclusions: These data confirm the importance of raising prognostic awareness, and endorsing hospice. Further research should focus on developing communication techniques to recommend SFC in a way that helps patients who continue to want more treatment to calmly understand and consider carefully the advice being offered, rather than simply disliking it and quickly rejecting it. [Table: see text]


2010 ◽  
Vol 38 (11) ◽  
pp. 2146-2154 ◽  
Author(s):  
Michelle Ng Gong ◽  
Gary Winkel ◽  
Rosamond Rhodes ◽  
Lynne D. Richardson ◽  
Jeffrey H. Silverstein

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.


2014 ◽  
Vol 23 (2) ◽  
pp. 104-111 ◽  
Author(s):  
Mary Ann Abbott ◽  
Debby McBride

The purpose of this article is to outline a decision-making process and highlight which portions of the augmentative and alternative communication (AAC) evaluation process deserve special attention when deciding which features are required for a communication system in order to provide optimal benefit for the user. The clinician then will be able to use a feature-match approach as part of the decision-making process to determine whether mobile technology or a dedicated device is the best choice for communication. The term mobile technology will be used to describe off-the-shelf, commercially available, tablet-style devices like an iPhone®, iPod Touch®, iPad®, and Android® or Windows® tablet.


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