Offering to Return Results to Research Participants: Attitudes and Needs of Principal Investigators in the Children's Oncology Group
Graduate studies at Western
|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|
|Keywords||No keywords specified (fix it)|
No categories specified
(categorize this paper)
|Through your library||Only published papers are available at libraries|
Similar books and articles
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, Eric Kodish, Shaureen Taweel, Susan Shurin & Charles Weijer, Disclosure of the Right of Research Participants to Receive Research Results: An Analysis of Consent Forms in the Children's Oncology Group.
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.
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.
Conrad V. Fernandez, Eric Kodish & Charles Weijer, Importance of Informed Consent in Offering to Return Research Results to Research Participants.
Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy & Kathy Hudson (2008). Public Expectations for Return of Results From Large-Cohort Genetic Research. American Journal of Bioethics 8 (11):36 – 43.
Lee Black & Kelly A. McClellan (2011). Familial Communication of Research Results: A Need to Know? Journal of Law, Medicine and Ethics 39 (4):605-613.
Emmanuelle Lévesque, Yann Joly & Jacques Simard (2011). Return of Research Results: General Principles and International Perspectives. Journal of Law, Medicine and Ethics 39 (4):583-592.
Leslie Meltzer Henry, Undesirable Implications of Disclosing Individual Genetic Results to Research Participants.
Vardit Ravitsky & Benjamin S. Wilfond (2006). Disclosing Individual Genetic Results to Research Participants. American Journal of Bioethics 6 (6):8 – 17.
Ma'N. H. Zawati & Amélie Rioux (2011). Biobanks and the Return of Research Results: Out with the Old and In with the New? Journal of Law, Medicine and Ethics 39 (4):614-620.
Denise Avard, Karine Sénécal, Parvaz Madadi & Daniel Sinnett (2011). Pediatric Research and the Return of Individual Research Results. Journal of Law, Medicine and Ethics 39 (4):593-604.
Anne Marie Tassé (2011). The Return of Results of Deceased Research Participants. Journal of Law, Medicine and Ethics 39 (4):621-630.
David Wendler & Christine Grady (2008). What Should Research Participants Understand to Understand They Are Participants in Research? Bioethics 22 (4):203–208.
S. D. MacNeil & C. V. Fernandez (2007). Attitudes of Research Ethics Board Chairs Towards Disclosure of Research Results to Participants: Results of a National Survey. Journal of Medical Ethics 33 (9):549-553.
Sorry, there are not enough data points to plot this chart.
Added to index2010-09-08
Recent downloads (6 months)0
How can I increase my downloads?