Recent advances in genetics and related technologies have made it increasingly important for individuals, families and communities to be more knowledgeable about these areas of interest. In June 2000, the Health Resources and Services Administration (HRSA), DHHS, awarded the March of Dimes Foundation a five-year cooperative agreement to create a network for the development and dissemination of culturally appropriate genetic information that will assist individuals and groups in making inquires and informed choices about health and health care. Working with the Genetic Alliance, Family Voices and other consumer organizations and a research group, LTG Associates, a careful approach is being taken to ensure that knowledge of and attitudes toward genetics in various and diverse communities will be integrated into the development of future educational materials. In this session, we will describe the initial aspects of our two-pronged approach of research and network development including: 1) the findings of a comprehensive literature review, 2) the preliminary results of interviews of selected consumer groups, and 3) the steps we have taken to create a forum or network capable of providing, among other things, technical assistance to support and advocate groups and facilitating consumer input in public policy discussions and decision-making regarding human genetics.
Learning Objectives: Following this session participants should be able to: 1) Articulate trends in current consumer information pertaining to human genetics. 2) Describe sensitive issues regarding human genetics in selected communities. 3) Determine various approaches used to create a heterogeneous, human genetics network.
Keywords: Community Participation, Genetics
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
Disclosure not received
Relationship: Not Received.