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  1. Essay: Why do patients want information if not to take part in decision making?Neil Manson - 2010 - Journal of Medical Ethics 36 (12):834-837.
    There is empirical evidence that many patients want information about treatment options even though they do not want to take a full part in decision-making about treatment. Such evidence may have considerable ethical implications but is methodologically problematic. It is argued here that, in fact, it is not at all surprising that patients' informational interests should be separable from their interests in decision-making. A number of different reasons for wanting information are offered, some to do with the content of information; (...)
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  • 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.
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  • Feedback of Research Findings for Vaccine Trials: Experiences from Two Malaria Vaccine Trials Involving Healthy Children on the K enyan C oast.Caroline Gikonyo, Dorcas Kamuya, Bibi Mbete, Patricia Njuguna, Ally Olotu, Philip Bejon, Vicki Marsh & Sassy Molyneux - 2013 - Developing World Bioethics 13 (1):48-56.
    Internationally, calls for feedback of findings to be made an ‘ethical imperative’ or mandatory have been met with both strong support and opposition. Challenges include differences in issues by type of study and context, disentangling between aggregate and individual study results, and inadequate empirical evidence on which to draw. In this paper we present data from observations and interviews with key stakeholders involved in feeding back aggregate study findings for two Phase II malaria vaccine trials among children under the age (...)
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  • Duty to disclose what? Querying the putative obligation to return research results to participants.F. A. Miller, R. Christensen, M. Giacomini & J. S. Robert - 2008 - Journal of Medical Ethics 34 (3):210-213.
    Many research ethics guidelines now oblige researchers to offer research participants the results of research in which they participated. This practice is intended to uphold respect for persons and ensure that participants are not treated as mere means to an end. Yet some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support of (...)
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  • Offering to Return Results to Research Participants: Attitudes and Needs of Principal Investigators in the Children's Oncology Group.Conrad V. Fernandez, Eric Kodish, Susan Shurin & Charles Weijer - unknown
    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. (...)
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  • Public expectations for return of results from large-cohort genetic research.Juli Murphy, Joan Scott, David Kaufman, Gail Geller, Lisa LeRoy & Kathy Hudson - 2008 - American Journal of Bioethics 8 (11):36 – 43.
    The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced (...)
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  • The search for clarity in communicating research results to study participants.D. I. Shalowitz & F. G. Miller - 2008 - Journal of Medical Ethics 34 (9):e17-e17.
    Current guidelines on investigators' responsibilities to communicate research results to study participants may differ on whether investigators should proactively re-contact participants, the type of results to be offered, the need for clinical relevance before disclosure, and the stage of research at which results should be offered. Lack of consistency on these issues, however, does not undermine investigators' obligation to offer to disclose research results: an obligation rooted firmly in the principle of respect for research participants.
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  • The Return of Research Results to Participants: Pilot Questionnaire of Adolescents and Parents of Children with Cancer.Conrad V. Fernandez, Darcy Santor, Charles Weijer, Caron Strahlendorf, Albert Moghrabi, Rebecca Pentz, Jun Gao & Eric Kodish - unknown
    PURPOSE: The offer to return research results to participants is increasingly recognized as an ethical obligation, although few researchers routinely return results. We examined the needs and attitudes of parents of children with cancer and of adolescents with cancer to the return of research results. METHODS: Seven experts in research ethics scored content validity on parent and adolescent questionnaires previously developed through focus group and phone interviews. The questionnaires were revised and provided to 30 parents and 10 adolescents in a (...)
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  • Providing Research Results to Participants: Attitudes and Needs 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 - unknown
    PURPOSE: There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants. METHODS: A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against (...)
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  • Considerations and Costs of Disclosing Study Findings to Research Participants.Conrad V. Fernandez, Chris Skedgel & Charles Weijer - unknown
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