Genetics Literacy and Informed Consent

Year Awarded: 2004
Project Leaders:
Jill Elfenbein, MSU Department of Audiology and Speech Sciences, Rachel Fisher, MSU Department of Pediatrics and Human Development, Eric Buhr, Fowler High School, Lori Kindsvatter, Pewamo Westphalia High School, Rose Smith, Community Advisory Committee, Suzanne Thelen, Community Ethics Committee

Project Description:
With the mapping and sequencing of the human genome essentially complete, we now know the order of the letters in the instruction book for human beings. The stage is set for rapid expansion of research that will help us to understand, predict, prevent, and treat health problems that are in part or whole the result of an individual's genetic make-up. However, the leaders of this project say that enthusiasm for such efforts must be tempered by the realization that the information gained from genetic research carries potential risks, as well as benefits.

This MSU and mid-Michigan partnership brings together expertise in audiology, genetics, communication, education, and community culture. Their research goals are to improve our understanding of ways to increase genetics literacy in large families and populations that serve as genetics research subjects, and to increase the genetics literacy of high school students who face a lifetime of making decisions about health care based on the ever-increasing body of information available about genetic contributions to disease. Project leaders expect that their efforts will be immediately beneficial for the community and lay groundwork for future research.

Recent Developments: (Article from Forum, June-August 2004)