Disclosure of Research Result to Research Participants: Needs and Attitudes of Adolescents and Parents
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
BACKGROUND: Researchers have a moral responsibility to offer to return research results to participants, but the needs and attitudes of parents and adolescents with cancer in paediatric oncology regarding the issue are relatively unknown.OBJECTIVES: To explore the needs of potential research participants or their guardians with respect to the offer of a return of research results. METHODS: A questionnaire was used in a focus group and in telephone interviews with eight adolescents and 12 parents of children with cancer. The participants were asked to respond to the questions and to comment on the inclusiveness of the questionnaire.RESULTS: The majority of participants (18 of 20) wished to receive research results. Two somewhat unexpected findings are described. First, all participants in the present study felt that it was the primary responsibility of the participant to retain contact with the researchers for the purpose of obtaining research results. Second, few participants (n=2) indicated that the Internet would be a satisfactory way of transmitting these results. One-half of the participants wished to have face-to-face communication of results.CONCLUSIONS: These results provide preliminary guidance for the return of research results to participants and validate the use of the questionnaire in a larger study of this issue
|Keywords||No keywords specified (fix it)|
No categories specified
(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, 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, Susan Shurin & Charles Weijer, Offering to Return Results to Research Participants: Attitudes and Needs of Principal Investigators in the Children's Oncology Group.
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.
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.
Leslie Meltzer Henry, Undesirable Implications of Disclosing Individual Genetic Results to Research Participants.
Conrad V. Fernandez, Eric Kodish & Charles Weijer, Importance of Informed Consent in Offering to Return Research 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.
Ben Chan, Flavia M. Facio, Haley Eidem, Sara Chandros Hull, Leslie G. Biesecker & Benjamin E. Berkman (2012). Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives. American Journal of Bioethics 12 (10):1-8.
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.
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.
Kate Read, Conrad Vincent Fernandez, Jun Gao, Caron Strahlendorf, Albert Moghrabi, Rebecca Davis Pentz, Raymond Carlton Barfield, Justin Nathaniel Baker, Darcy Santor, Charles Weijer & Eric Kodish, Decision-Making by Adolescents and Parents of Children with Cancer Regarding Health Research Participation.
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.
David Wendler & Christine Grady (2008). What Should Research Participants Understand to Understand They Are Participants in Research? Bioethics 22 (4):203–208.
Elizabeth Soliday & Annette L. Stanton (1995). Deceived Versus Nondeceived Participants' Perceptions of Scientific and Applied Psychology. Ethics and Behavior 5 (1):87 – 104.
Added to index2010-09-08
Total downloads2 ( #386,461 of 1,413,453 )
Recent downloads (6 months)1 ( #154,636 of 1,413,453 )
How can I increase my downloads?