Differential Recall of Consent Information and Parental Decisions About Enrolling Children in Research Studies

• Published in: The Journal of general psychology 2009-01, Vol.136 (1), p.91-108
• Main Authors: Boccia, Maria L., Campbell, Frances A., Goldman, Barbara D., Skinner, Martie
• Format: Article
• Language: English
• Subjects: Adult; benefits; Biological and medical sciences; Child; Child Advocacy; Child development; Child, Preschool; Children & youth; Clinical trials; Consent; Decision Making; Developmental psychology; Early Intervention (Education); Education; Enrollments; Families & family life; Female; Fundamental and applied biological sciences. Psychology; Heart Failure - psychology; Heart Failure - therapy; Heart-Assist Devices - psychology; Hormone replacement therapy; Human subjects; Humans; Hypotheses; Infant; Infant, Newborn; Infant, Premature; Informed consent; Low income groups; Male; Medical research; Mental Recall; Parental Consent - psychology; Parents & parenting; Parents - education; Patient Selection; Polysomnography - psychology; Poverty - psychology; Psychology. Psychoanalysis. Psychiatry; Psychology. Psychophysiology; Reading comprehension; Recall; recall of information; research decisions; Risk Assessment; risks; Women; Young Adult
• ISSN: 0022-1309; 1940-0888
• DOI: 10.3200/GENP.136.1.91-108

In the present simulation research, the authors examined the relations between the type of information that low-income parents (N = 116) recalled from informed-consent materials and their hypothetical decision to enroll a child in a clinical study. The authors gave parents or guardians of Head Start children information about a medical protocol involving high risk and significant potential benefit to child participants. Differential recall of the various categories of information (procedures, benefits, risks and costs, rights, and other) showed that relative to all consent information conveyed to them, participants recalled most about procedures and least about their child's rights as a study participant. Relative to their own recall, they also recounted most about procedures, slightly more about benefits than risks, and least about research rights. The pattern of recall differed among those who agreed to enroll and those who declined. The ratio of recalled risks to benefits predicted enrollment decisions.