 | The 131st Annual Meeting (November 15-19, 2003) of APHA |
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| The 131st Annual Meeting (November 15-19, 2003) of APHA |
Diana S. Catz, PhD, MPH1, Jonathan N. Tobin, PhD1, Michele Puryear, MD, PhD2, Penny Kyler3, Nancy Green, MD4, Ann Umemoto4, Jennifer Cernoch, PhD5, Nancye Buelow6, and Fredericka Wolman, MD, MPH4. (1) Clinical Directors Network, Inc., 54 West 39th Street 11th Floor, New York, NY 10018, 212-382-0699 Ext 230, dcatz@CDNetwork.org, (2) Genetics Services Branch, Children with Special Health Care Needs, Maternal Child Health Bureau, Health Resources and Services Administration, Department of Health and Human Services, 5600 Fishers Lane, Room 18-05, Rockville, MD 20857, (3) Health Resources and Services Administration (HRSA), Maternal Child Health Bureau, Genetic Services Branch, 5600 Fishers Lane, Parklawn Bldg. Room 18A-19, Rockville, MD 20857, (4) March of Dimes, 1275 Mamaroneck Avenue, White Plains, NY 10605, (5) Family Voices, 3411 Candelaria NE, Suite M, Albuquerque, NM 87107, (6) Genetic Alliance, 154 Magnolia Lane, Clyde, NC 28721
Goals: To identify attitudes and beliefs about genetics among diverse cultural and ethnic groups and to use this information to help design community-based genetic education. Methods: Five discussion groups were conducted in English, two in Spanish and one in Chinese. Participants were 36 % Hispanics, 27% African Americans, 22% Caucasian and 15% Chinese. 84% of the participants were women. Results: To develop a community-based genetic education program, discussion groups were conducted in selected communities. This presentation discusses the discussion groups. A future presentation will examine the development of an intervention. Participants' knowledge of genetics, genetic testing and newborn screening was very limited. Minority participants reported that their main source of health information came from pamphlets/booklets, the media and through professional training. In contrast white participants looked for health information from journals, the Internet and the media. Most participants indicated they need more information about genetics in general, and about genetic testing and newborn screening specifically. Participants with only positive feelings about genetics and genetic testing were in general less educated than people who had concerns. To participants, the major advantage of testing was the possibility of preventing diseases. Concerns were: 1) Anxiety; 2) Insurance restrictions; 3) Financial burden; 4) Privacy; 5) Racial discrimination 6) Direction of the genetic technology. . Conclusions: Although information garnered from discussion groups have some limitations, these discussions revealed that despite reservations about the topic genetics, most people are interested in learning more about genetics and thus a need for community-based genetic education programs. Supported by # 5U93MCO0157-02-HRSA (MCHB)
Learning Objectives:
Keywords: Genetics, Community Health
Related Web page: www.CDNetwork.org
Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.