Literature DB >> 16997825

Altruistic discourse in the informed consent process for childhood cancer clinical trials.

Christian Simon1, Michelle Eder, Eric Kodish, Laura Siminoff.   

Abstract

Scholars have debated the role that altruistic considerations play--and should play--in recruitment and decision-making processes for clinical trials. Little empirical data are available to support their various perspectives. We analyzed 140 audiotaped pediatric informed consent sessions, of which 95 (68%) included at least one discussion of how participation in a cancer clinical trial might benefit: 1) the pursuit of scientific knowledge generally; 2) other children with cancer specifically; and 3) "the future" and other vaguely defined recipients. Clinicians initiated most (80%) of these discussions of altruism. The enrollment rate of children in the clinical trial was high (83%) overall, but not higher among children whose parents were involved in an altruism-oriented discussion. These findings suggest that: (1) clinicians invoke a spectrum of altruistic considerations rather than a single monothematic notion of altruism, and (2) the effect of altruistic considerations on subsequent enrollment decisions is marginal. While further research on this topic is warranted, bioethical debate should strive to reflect the diversity of altruistic discourse in clinical research encounters and to place this discourse in the context of other, including nonaltruistic, considerations.

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Year:  2006        PMID: 16997825     DOI: 10.1080/15265160600862395

Source DB:  PubMed          Journal:  Am J Bioeth        ISSN: 1526-5161            Impact factor:   11.229


  13 in total

1.  Regulating trust in pediatric clinical trials.

Authors:  Wim Pinxten; Herman Nys; Kris Dierickx
Journal:  Med Health Care Philos       Date:  2008-07-18

2.  Reasons for participation in optional pharmacokinetic studies in children with cancer: a Children's Oncology Group phase 1 consortium study.

Authors:  Stacey L Berg; Naomi Winick; Ashish Mark Ingle; Peter C Adamson; Susan M Blaney
Journal:  Pediatr Blood Cancer       Date:  2010-07-15       Impact factor: 3.167

3.  Parents' views of involvement in concurrent research with their neonates.

Authors:  Frances Rieth Ward
Journal:  J Empir Res Hum Res Ethics       Date:  2010-06       Impact factor: 1.742

Review 4.  Communication in pediatric oncology: State of the field and research agenda.

Authors:  Bryan A Sisk; Jennifer W Mack; Rachel Ashworth; James DuBois
Journal:  Pediatr Blood Cancer       Date:  2017-07-27       Impact factor: 3.167

5.  Engagement, Exploitation, and Human Intracranial Electrophysiology Research.

Authors:  Michelle T Pham; Nader Pouratian; Ashley Feinsinger
Journal:  Neuroethics       Date:  2022-08-13       Impact factor: 1.427

6.  Advancing the field of communication research in pediatric oncology: A systematic review of the literature analyzing medical dialogue.

Authors:  Erica C Kaye; Ashley Kiefer; Kristina Zalud; Melanie Gattas; Ian Snyder; Holly Spraker-Perlman; Justin N Baker
Journal:  Pediatr Blood Cancer       Date:  2018-08-01       Impact factor: 3.167

7.  Views of adolescents and parents on pediatric research without the potential for clinical benefit.

Authors:  David Wendler; Emily Abdoler; Lori Wiener; Christine Grady
Journal:  Pediatrics       Date:  2012-09-10       Impact factor: 7.124

8.  Human subjects protections in biomedical enhancement research: assessing risk and benefit and obtaining informed consent.

Authors:  Maxwell J Mehlman; Jessica W Berg
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

9.  How do parents experience being asked to enter a child in a randomised controlled trial?

Authors:  Valerie Shilling; Bridget Young
Journal:  BMC Med Ethics       Date:  2009-02-16       Impact factor: 2.652

Review 10.  The ethical issues regarding consent to clinical trials with pre-term or sick neonates: a systematic review (framework synthesis) of the empirical research.

Authors:  E Wilman; C Megone; S Oliver; L Duley; G Gyte; J M Wright
Journal:  Trials       Date:  2015-11-04       Impact factor: 2.279

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