David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Journal of Medical Ethics 36 (2):106-110 (2010)
Objective To assess parental permission for a neonate's research participation using the MacArthur competence assessment tool for clinical research (MacCAT-CR), specifically testing the components of understanding, appreciation, reasoning and choice. Study Design Quantitative interviews using study-specific MacCAT-CR tools. Hypothesis Parents of critically ill newborns would produce comparable MacCAT-CR scores to healthy adult controls despite the emotional stress of an infant with critical heart disease or the urgency of surgery. Parents of infants diagnosed prenatally would have higher MacCAT-CR scores than parents of infants diagnosed postnatally. There would be no difference in MacCAT-CR scores between parents with respect to gender or whether they did or did not permit research participation. Participants Parents of neonates undergoing cardiac surgery who had made decisions about research participation before their neonate's surgery. Methods The MacCAT-CR. Results 35 parents (18 mothers; 17 fathers) of 24 neonates completed 55 interviews for one or more of three studies. Total scores: magnetic resonance imaging (mean 36.6, SD 7.71), genetics (mean 38.8, SD 3.44), heart rate variability (mean 37.7, SD 3.30). Parents generally scored higher than published subject populations and were comparable to published control populations with some exceptions. Conclusions The MacCAT-CR can be used to assess parental permission for neonatal research participation. Despite the stress of a critically ill neonate requiring surgery, parents were able to understand study-specific information and make informed decisions to permit their neonate's participation
|Keywords||No keywords specified (fix it)|
|Categories||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
A. Culbert (2005). Parental Preferences for Neonatal Resuscitation Research Consent: A Pilot Study. Journal of Medical Ethics 31 (12):721-726.
E. K. Darling (2011). Is Mandatory Neonatal Eye Prophylaxis Ethically Justified? A Case Study From Canada. Public Health Ethics 4 (2):185-191.
Alexander A. Kon (2011). Life and Death Choices in Neonatal Care: Applying Shared Decision-Making Focused on Parental Values. American Journal of Bioethics 11 (2):35 - 36.
Victoria A. Miller, William W. Reynolds & Robert M. Nelson (2008). Parent-Child Roles in Decision Making About Medical Research. Ethics and Behavior 18 (2 & 3):161 – 181.
Kristina Orfali & Elisa Gordon (2004). Autonomy Gone Awry: A Cross-Cultural Study of Parents' Experiences in Neonatal Intensive Care Units. Theoretical Medicine and Bioethics 25 (4):329-365.
Dawn R. Elm & Tara J. Radin (2012). Ethical Decision Making: Special or No Different? [REVIEW] Journal of Business Ethics 107 (3):313-329.
Jacob M. Appel (2009). Neonatal Euthanasia: Why Require Parental Consent? [REVIEW] Journal of Bioethical Inquiry 6 (4):477-482.
Joseph G. P. Paolillo & Scott J. Vitell (2002). An Empirical Investigation of the Influence of Selected Personal, Organizational and Moral Intensity Factors on Ethical Decision Making. Journal of Business Ethics 35 (1):65 - 74.
Rommel Salvador & Robert G. Folger (2009). Business Ethics and the Brain. Business Ethics Quarterly 19 (1):1-31.
Pauline E. Osamor & Nancy Kass (2012). Decision-Making and Motivation to Participate in Biomedical Research in Southwest Nigeria. Developing World Bioethics 12 (2):87-95.
David Fritzsche & E. Oz (2007). Personal Values' Influence on the Ethical Dimension of Decision Making. Journal of Business Ethics 75 (4):335 - 343.
H. U. I. Edwin (2011). Adolescent and Parental Perceptions of Medical Decision-Making in Hong Kong. Bioethics 25 (9):516-526.
H. U. I. Edwin, W. U. Dorian, Sau-ying Chiu & Suet-kam Shum (2011). Adolescent and Parental Perceptions of Medical Decision-Making in Hong Kong. Bioethics 25 (9):516-526.
Miguel Ruiz-Canela, Cristina Lopez-del Burgo, Silvia Carlos, Maria Calatrava, Carlos Beltramo, Alfonso Osorio & Jokin de Irala (2013). Observational Research with Adolescents: A Framework for the Management of the Parental Permission. [REVIEW] BMC Medical Ethics 14 (1):2-.
Berit Støre Brinchmann & Per Nortvedt (2001). Ethical Decision Making in Neonatal Units — The Normative Significance of Vitality. Medicine, Health Care and Philosophy 4 (2):193-200.
Sorry, there are not enough data points to plot this chart.
Added to index2010-09-13
Total downloads1 ( #500,190 of 1,410,540 )
Recent downloads (6 months)1 ( #178,988 of 1,410,540 )
How can I increase my downloads?