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APHA Scientific Session and Event Listing

Recorded presentation

Aimee Anido¹, Lisa M. Carlson, MPH, CHES², Lisa Taft¹, and Stephanie L. Sherman, PhD¹. (1) Department of Genetics, Emory University, 615 Michael Street, Whitehead Bldg, Suite 301, Atlanta, GA 30322, (2) Emory Transplant Center, 1364 Clifton Road NE, Box 7, Atlanta, GA 30322, 404.712.4807, lisa.carlson@emoryhealthcare.org

We have conducted a qualitative analysis of responses from women concerning their attitudes toward testing for carrier status of the fragile X syndrome (FXS) genetic mutation among reproductive-age women. We obtained responses from focus groups including women with and without FXS in their families. We found the following themes: (1) mothers of children with FXS have difficulty formulating their opinions on population screening because of their unique experiences surrounding their carrier diagnosis and their relationship with their children with FXS, (2) the motivation for carrier testing and need for information differ by family history of FXS and prenatal status, and (3) the timing of carrier status with respect to a woman's life stage dictates whether carrier information will be viewed as beneficial or detrimental. There was evidence that non-carrier women from the general population would be wholly unprepared for positive carrier results. These findings have significant implications for genetic counseling, population screening, and related health education.

Learning Objectives: At the conclusion of this presentation, participants will be able to

• Describe women's attitudes towards carrier testing for specific genetic disorders
• Apply these findings to health education programs and genetics

Keywords: Genetics, Health Education

Presenting author's disclosure statement:

Any relevant financial relationships? No

Recorded presentation