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Abstract |
PURPOSE: The offer to return a summary of results to participants after the conclusion of clinical research has many potential benefits. The authors determined current practice and attitudes and needs of researchers in establishing programs to return results to research participants. METHODS: An Internet survey of all 236 principal investigators (PIs) of the Children's Oncology Group in May 2002 recorded PI and institutional demographics, current practice, and perceived barriers to and needs of PIs for the creation of research results programs. RESULTS: One hundred fifty (63.8%) PIs responded. Few institutions (n = 5) had established, comprehensive programs to offer the return of results. PIs indicated that major impediments to the implementation of such programs are the preparation of lay summaries, time constraints, the task of contacting participants, and potential distress for the participants. PIs identified the following facilitators to the establishment of a program in their own institution: lay summaries, web site, preparation of an oncologist's summary, and financial credits. There was no clear consensus as to when the results should be shared: 30% indicated after the study was closed and 24% indicated at the time of publication of results. A substantial proportion of respondents opposed or strongly opposed the implementation of a universal offering of results to research participants. CONCLUSIONS: Few Children's Oncology Group institutions have programs that offer the return of results to research participants. Significant barriers and facilitators to this process have been identified
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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.
Health Research Participants' Preferences for Receiving Research Results.C. R. Long, M. K. Stewart, T. V. Cunningham, T. S. Warmack & P. A. McElfish - 2016 - Clinical Trials 13:1-10.
Qualitative Study of Participants' Perceptions and Preferences Regarding Research Dissemination.Rachel S. Purvis, Traci H. Abraham, Christopher R. Long, M. Kathryn Stewart, T. Scott Warmack & Pearl Anna McElfish - 2017 - Ajob Empirical Bioethics 8 (2):69-74.
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.
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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