Massad J, Oles B, Roeber C, Tashima N, Crain C. 2001. Genetics literacy project: Consumer organization study report. Takoma Park, MD: LTG Associates, 1 v.
Annotation: This report presents research examining the efforts of organizations serving the needs of families and individuals affected by genetic conditions. This research is one phase in the development of a toolkit to guide efforts to conduct education and outreach on genetics and health care to promote informed health care decisions, particularly for the underserved. This current phase of research is focused specifically on efforts of organizations to meet the needs of individuals and families affected by known genetic conditions.The report is organized into three main sections. Section 1 discusses issues related to the content of outreach materials produced, the development of these materials, modes of dissemation to consumers, and the gneral health outreach context in which they operate. Section 2 discusses lessons learned by consumer organizations that have direct bearing on outreach efforts. Section 3 discusses specific next steps to be carried out as the research project moves forward. [Funded by the Maternal and Child Health Bureau]
Contact: National Newborn Screening and Genetics Resource Center, University of Texas Health Science Center at San Antonio, 1912 West Anderson Lane, Suite 210, Austin, TX 78757, Telephone: (512) 454-6419 Fax: (512) 454-6509 E-mail: email@example.com Web Site: http://genes-r-us.uthscsa.edu Available from the website.
Keywords: Development, Education, Educational materials, Families, Genetic disorders, Genetics, Health care, Outreach, Research, Underserved communities, Writing