Effectiveness of pre-counseling workshops in improving genetic literacy among at risk Asian American women

Asian immigrants face economic, cultural and linguistic barriers in accessing mainstream health care services. Among the most vulnerable are pregnant women and women of childbearing age who are at risk for conceiving children with birth defects and genetic disorders. For them, the barriers are compounded by the complexity of the science of genetics.

Using a community-based participatory approach, the Charles B. Wang Community Health Center, one of four centers collaborating with the March of Dimes on a multi-site project funded by the Health Resources and Services Administration (HRSA), has developed a culturally competent 1-on-1 pre-counseling workshop curriculum to increase genetic health literacy for Chinese immigrant women in New York City.

The workshop curriculum introduces the basics of genetics, its relevance to the health of mothers and babies, common genetic disorders and tests, and the purposes of genetic counseling. The workshop immediately precedes the genetic counseling session, and is conducted by a linguistically and culturally concordant health educator, who also translates for the patient and the counselor, and encourages the patient to ask questions and raise concerns.

We evaluated the efficacy of these workshops by administering brief pre/post-session questionnaires to patients and semi-structured assessment to the genetic counselor. Pilot data suggested that the workshops increased the patients' awareness of genetic disorders and genetic services. The genetic counselor observed that patients who participated in workshops exhibited better attitude and quality of communication than those who did not. We will present data on changes in genetic literacy as a result of the workshops.