{"title":"Parent and Child Perceptions of the Benefits of Research Participation.","authors":"Victoria A Miller, Chris Feudtner","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>The primary objective of this study was to describe parents' and children's perceptions of the health benefits of research participation. We assessed 180 children ages 8 to 17 years who recently enrolled in medical research and their parents. Of the 136 parents with children on observational protocols, 41% indicated that there would be a health benefit to the child. Their descriptions of benefits revealed that many envisioned a future health benefit to the child arising from improvements in treatment due to the research. There was no difference in ratings of likelihood or importance of benefit between parents of children enrolled in observational protocols versus interventional protocols. Children enrolled in observational protocols were more likely to respond \"don't know\" to the question about potential health benefit compared to children on interventional protocols. For both observational and interventional protocols, the informed consent process may be enhanced when research personnel explicitly differentiate between different types of potential benefits, including heretofore-unrecognized future direct health benefits.</p>","PeriodicalId":73513,"journal":{"name":"IRB","volume":"38 4","pages":"1-7"},"PeriodicalIF":0.0,"publicationDate":"2016-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5790123/pdf/nihms935663.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"35830134","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Zachary P Hallinan, Annemarie Forrest, Gina Uhlenbrauck, Sheila Young, Ross McKinney
{"title":"Barriers to Change in the Informed Consent Process: A Systematic Literature Review.","authors":"Zachary P Hallinan, Annemarie Forrest, Gina Uhlenbrauck, Sheila Young, Ross McKinney","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":73513,"journal":{"name":"IRB","volume":"38 3","pages":"1-10"},"PeriodicalIF":0.0,"publicationDate":"2016-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34641848","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Stephanie Solomon Cargill, Debra DeBruin, Milton Eder, Elizabeth Heitman, Julie M Kaberry, Jennifer B McCormick, Jennifer Opp, Richard Sharp, A Hal Strelnick, Sabune J Winkler, Mark Yarborough, Emily E Anderson
{"title":"Community-Engaged Research Ethics Review: Exploring Flexibility in Federal Regulations.","authors":"Stephanie Solomon Cargill, Debra DeBruin, Milton Eder, Elizabeth Heitman, Julie M Kaberry, Jennifer B McCormick, Jennifer Opp, Richard Sharp, A Hal Strelnick, Sabune J Winkler, Mark Yarborough, Emily E Anderson","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":73513,"journal":{"name":"IRB","volume":"38 3","pages":"11-9"},"PeriodicalIF":0.0,"publicationDate":"2016-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4997782/pdf/nihms810138.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34642317","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The Optimistic Bias and Illusions of Control in Clinical Research.","authors":"Lynn A Jansen","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":73513,"journal":{"name":"IRB","volume":"38 2","pages":"8-14"},"PeriodicalIF":0.0,"publicationDate":"2016-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34388082","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Who's Willing? Characteristics Associated with Willingness to Participate in Clinical Research.","authors":"Jennifer K Walter, Matthew M Davis","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":73513,"journal":{"name":"IRB","volume":"38 2","pages":"15-9"},"PeriodicalIF":0.0,"publicationDate":"2016-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34388085","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Nicole C Lockhart, Anna M Smith, Latarsha J Carithers, Carol J Weil
{"title":"Genomic Research with Organs and Tissues Originating from Transplant Donors: Ethical Considerations for the GTEx Project.","authors":"Nicole C Lockhart, Anna M Smith, Latarsha J Carithers, Carol J Weil","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":73513,"journal":{"name":"IRB","volume":"38 2","pages":"1-7"},"PeriodicalIF":0.0,"publicationDate":"2016-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6753524/pdf/nihms-1049546.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41222285","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Celeste M Condit, Diane M Korngiebel, Lesley Pfeifer, Anne D Renz, Deborah J Bowen, David Kaufman, Laura Min Mercer Kollar, Karen L Edwards
{"title":"What Should Be the Character of the Researcher- Participant Relationship? Views of Participants in a Long-standing Cancer Genetic Registry.","authors":"Celeste M Condit, Diane M Korngiebel, Lesley Pfeifer, Anne D Renz, Deborah J Bowen, David Kaufman, Laura Min Mercer Kollar, Karen L Edwards","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":73513,"journal":{"name":"IRB","volume":"37 4","pages":"1-10"},"PeriodicalIF":0.0,"publicationDate":"2015-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34139081","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Scott Y H Kim, Renee Wilson, Raymond De Vries, H Myra Kim, Robert G Holloway, Karl Kieburtz
{"title":"Could the High Prevalence of Therapeutic Misconception Partly Be a Measurement Problem?","authors":"Scott Y H Kim, Renee Wilson, Raymond De Vries, H Myra Kim, Robert G Holloway, Karl Kieburtz","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":73513,"journal":{"name":"IRB","volume":"37 4","pages":"11-8"},"PeriodicalIF":0.0,"publicationDate":"2015-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34141121","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Carleigh B Krubiner, Raafay H Syed, Maria W Merritt
{"title":"Health Researchers' Ancillary-Care Responsibilities in Low-Resource Settings: The Landscape of Institutional Guidance.","authors":"Carleigh B Krubiner, Raafay H Syed, Maria W Merritt","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":73513,"journal":{"name":"IRB","volume":"37 3","pages":"12-9"},"PeriodicalIF":0.0,"publicationDate":"2015-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"34139079","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}