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Abstract |
BACKGROUND: The offer of return of research results to study participants has many potential benefits. The current study examined the offer of return of research results by analyzing consent forms from 2 acute lymphoblastic leukemia studies of the 235 institutional members of the Children's Oncology Group. METHODS: Institutional review board (IRB)-approved consent forms from 2 standard-risk acute lymphoblastic leukemia studies (Children's Cancer Group [CCG] 1991 and Pediatric Oncology Group [POG] 9407) were analyzed independently by 2 reviewers. RESULTS: The authors received replies from 202 of the 235 institutions that were contacted (85%). One hundred eighty-one institutions had CCG 1991 (n = 96) or POG 9905 (n = 85) protocols that were approved by an IRB. Most institutions provided contact information for the principal investigator (n = 175; 97%) and a member of the institution's research services office (n = 154; 85%). Only 5 (2.8%) institutions provided an indication of a participant's right to receive a summary of research results; most of these institutions provided details on how (n = 5) or when (n = 5) this was to occur. All of these institutions (n = 162; 89.5%) provided a specific statement offering new information that might affect a participant's decision to continue to participate in a study. Only 2 institutional consent forms offered participants the option to receive research results, and only 10 (5.5%) consent forms contained an unambiguous, specific statement offering to provide new information after the study was closed. CONCLUSIONS: Few institutional review board-approved consent forms explicitly indicate the right of research recipients to receive a summary of the results of the research in which they have participated
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Citations of this work BETA
Disclosure of Individual Research Results in Clinico-Genomic Trials: Challenges, Classification and Criteria for Decision-Making.Regine Kollek & Imme Petersen - 2011 - Journal of Medical Ethics 37 (5):271-275.
Utilizing Focus Groups with Potential Participants and Their Parents: An Approach to Inform Study Design in a Large Clinical Trial.Sandeep Kadimpati, Jennifer B. McCormick, Yichen Chiu, Ashley B. Parker, Aliya Z. Iftikhar, Randall P. Flick & David O. Warner - 2014 - Ajob Empirical Bioethics 5 (3):31-38.
Informing Research Participants of Research Results: Analysis of Canadian University Based Research Ethics Board Policies.S. D. MacNeil - 2006 - Journal of Medical Ethics 32 (1):49-54.
A Second Look at Debriefing Practices: Madness in Our Method?Cathy Faye & Donald Sharpe - 2009 - Ethics and Behavior 19 (5):432-447.
Attitudes of Research Ethics Board Chairs Towards Disclosure of Research Results to Participants: Results of a National Survey.S. D. MacNeil & C. V. Fernandez - 2007 - Journal of Medical Ethics 33 (9):549-553.
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