The applicants will continue work on a consent form for a DNA bank at the University of Pennsylvania. Patients in the GCRC for other studies are invited to donate to the DNA bank; the investigators will use that population as test subjects for an improved consent process. They will use focus groups and then a """"""""think aloud"""""""" protocol (a modified focus group) and prospective jurors as test populations. They will then randomize 2500 subjects, half of whom will use a consent process using vignettes, to see if that technique elicits more informed consent. Subjects will complete a questionnaire about the consent process, assessing their understanding of key issues.
Merz, Jon F (2002) The ethics of research on informed consent. Control Clin Trials 23:172-7; discussion 178-81 |
Nelson, Robert M; Merz, Jon F (2002) Voluntariness of consent for research: an empirical and conceptual review. Med Care 40:V69-80 |
Merz, Jon F; Rebbeck, Timothy R; Sankar, Pamela et al. (2002) Pilot study: does the white coat influence research participation? IRB 24:6-8 |
Karlawish, J H; Klocinski, J L; Merz, J et al. (2000) Caregivers' preferences for the treatment of patients with Alzheimer's disease. Neurology 55:1008-14 |