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.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Research Project (R01)
Project #
1R01HG001765-01
Application #
2546136
Study Section
Special Emphasis Panel (ZRG2-SSS-F (04))
Project Start
1997-09-30
Project End
2000-08-31
Budget Start
1997-09-30
Budget End
1998-08-31
Support Year
1
Fiscal Year
1997
Total Cost
Indirect Cost
Name
University of Pennsylvania
Department
Internal Medicine/Medicine
Type
Schools of Medicine
DUNS #
042250712
City
Philadelphia
State
PA
Country
United States
Zip Code
19104
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