This protocol seeks to survey individuals at risk for Alzheimer disease with respect to their (1) willingness to participate in clinical research should they develop Alzheimer disease, (2) willingness to utilize research advance directives, (3) attitudes toward research with stored tissues, (4) attitudes toward confidentiality of research results, and (5) experience with genetic counseling. The study was approved by the NIMH IRB. We surveyed 504 individuals and surveying is completed. Several papers are either in press or have been published.
| Wendler, Dave; Emanuel, Ezekiel (2002) The debate over research on stored biological samples: what do sources think? Arch Intern Med 162:1457-62 |
| Wendler, Dave; Martinez, Rick A; Fairclough, Diane et al. (2002) Views of potential subjects toward proposed regulations for clinical research with adults unable to consent. Am J Psychiatry 159:585-91 |
