-
NIH Sep 30, 1997 | R01
Informed Consent to DNA Banking for Research
Institution: University of Pennsylvania Center for Bioethics
FOA Number: RFA-OD-97-001
Abstract
The project focuses on the applied development of an effective informed consent form and process for donation of blood to a DNA Bank solely for research purposes. This form will be used for securing consent from patients in the General Clinical Research Center at the Hospital of the University of Pennsylvania, from whom a blood sample will be solicited. A short series of vignettes will also be developed to prompt cognitive processing of the information in the consent form. The effectiveness of these vignettes will be tested in actual clinical use as an informed consent intervention, randomly assigning patients from whom a blood donation is solicited to receive either just the consent form or the form and vignettes. Donors will also be asked to participate in a brief survey about the consent process. The questionnaire will examine understanding and perceptions of risks and benefits. The analyses of these questionnaires will help inform researchers about information needs and desires and how to facilitate meaningful choices of those asked to donate blood or other tissues for banking and research purposes. (Informed Consent RFA. Co-funded with DOE)
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
R01Project Number:
R01HG001765Start Date:
Sep 30, 1997End Date:
Aug 31, 2000PROJECT TERMS:
behavioral /social science research tag, DNA, genetic registry /resource /referral center, health care policy, health related legal, health science research, health services research tag, human genetic material tag, human subject, Informed Consent, Interview, Questionnaires, tissue resource /registry