This project is an empirical evaluation of attitudes of patients and the public towards research involving human biological specimens. Over the last few years there have been a number of recommendations about what information should be provided to subject who are considering providing consent for the research and storage of human biological specimens. This is based primarily on theoretical assessments of what information should be important to subjects as well as speculations on what information they would want to know. However there is little data about what information patients are actually interested in hearing, why they are interested in it, and how they think that this informationmight influence decision to participate in research. During this past year, we have begun to survey 1200 patients about thier attitudes towards genetics research at 5 medical centers in the US.
| Hull, Sara Chandros; Gooding, Holly; Klein, Alison P et al. (2004) Genetic research involving human biological materials: a need to tailor current consent forms. IRB 26:1-7 |
