Disclosure of the Right of Research Participants to Receive Research Results: An Analysis of Consent Forms in the Children's Oncology Group
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jack Alan Reynolds
Learn more about PhilPapers
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
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library||
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Conrad V. Fernandez, Eric Kodish, Susan Shurin & Charles Weijer, Offering to Return Results to Research Participants: Attitudes and Needs of Principal Investigators in the Children's Oncology Group.
Conrad Vincent Fernandez, Shaureen Taweel, Eric D. Kodish & Charles Weijer, Disclosure of Research Result to Research Participants: Needs and Attitudes of Adolescents and Parents.
Conrad V. Fernandez, Darcy Santor, Charles Weijer, Caron Strahlendorf, Albert Moghrabi, Rebecca Pentz, Jun Gao & Eric Kodish, The Return of Research Results to Participants: Pilot Questionnaire of Adolescents and Parents of Children with Cancer.
James R. P. Ogloff & Randy K. Otto (1991). Are Research Participants Truly Informed? Readability of Informed Consent Forms Used in Research. Ethics and Behavior 1 (4):239 – 252.
Lee Black & Kelly A. McClellan (2011). Familial Communication of Research Results: A Need to Know? Journal of Law, Medicine & Ethics 39 (4):605-613.
Asya Al-Riyami, Deepali Jaju, Sanjay Jaju & Henry J. Silverman (2011). The Adequacy of Informed Consent Forms in Genetic Research in Oman: A Pilot Study. Developing World Bioethics 11 (2):57-62.
Conrad V. Fernandez, Eric Kodish & Charles Weijer, Importance of Informed Consent in Offering to Return Research Results to Research Participants.
Edward S. Dove, Denise Avard, Lee Black & Bartha M. Knoppers (2013). Emerging Issues in Paediatric Health Research Consent Forms in Canada: Working Towards Best Practices. [REVIEW] BMC Medical Ethics 14 (1):1-10.
Eric R. Pedersen, Clayton Neighbors, Judy Tidwell & Ty W. Lostutter (2011). Do Undergraduate Student Research Participants Read Psychological Research Consent Forms? Examining Memory Effects, Condition Effects, and Individual Differences. Ethics and Behavior 21 (4):332 - 350.
Carl E. Schneider (2010). The Hydra. Hastings Center Report 40 (4):9-11.
Judy Allen & Beverley Mcnamara (2011). Reconsidering the Value of Consent in Biobank Research. Bioethics 25 (3):155-166.
Ronald Kiguba, Paul Kutyabami, Stephen Kiwuwa, Elly Katabira & Nelson Sewankambo (2012). Assessing the Quality of Informed Consent in a Resource-Limited Setting: A Cross-Sectional Study. [REVIEW] BMC Medical Ethics 13 (1):21-.
Conrad Vincent Fernandez, Jun Gao, Caron Strahlendorf, Albert Moghrabi, Rebecca Davis Pentz, Raymond Carlton Barfield, Justin Nathaniel Baker, Darcy Santor, Charles Weijer & Eric Kodish, Providing Research Results to Participants: Attitudes and Needs of Adolescents and Parents of Children with Cancer.
Emma Verástegui (2006). Consenting of the Vulnerable: The Informed Consent Procedure in Advanced Cancer Patients in Mexico. [REVIEW] BMC Medical Ethics 7 (1):1-12.
Added to index2010-09-08
Total downloads2 ( #707,864 of 1,911,316 )
Recent downloads (6 months)1 ( #457,073 of 1,911,316 )
How can I increase my downloads?