179576 Family Stories: Privileging the "Backstories" of Genetic Screening

Monday, October 27, 2008: 9:06 AM

Caroline Lieber, MS, CGC , Joan H. Marks Graduate Program in Human Genetics, Sarah Lawrence College, Bronxville, NY
Marsha Hurst, PhD , Institute for Social and Economic Research and Policy (ISERP), Columbia University, New York, NY
Rachel N. Grob, MA, PhD , Graduate Studies, Sarah Lawrence College, Bronxville, NY
Linwood J. Lewis, PhD , Department of Psychology, Sarah Lawrence College, Bronxville, NY
As health professionals we increasingly frame pregnancy and the fetus in genetic terms. Prenatal screening becomes our marker, and the genetic information that results can become the way we think of heritability. For the pregnant woman, however, this privileging of genetic explanations may be far less prevalent. This study examines the “backstory” of heritability: how do pregnant women think about what is inherited—or passed on—in their families? Our research uses narrative understanding to elicit and “listen with” with the family stories of pregnant women. The goal is educate health professionals in clinical genetics to better understand what pregnant women believe is inherited, the importance she places on heritability, and how cultural and family values influence this understanding. Thirty semi-structured interviews were conducted with pregnant women recruited from community health programs. Two-thirds were Hispanic or African-American. Most were on Medicaid. Respondents beliefs about heritability can be understood in terms of three dimensions: (1) the environment—both the embodied environment and the external environment; (2) the attitudes and behaviors of the woman and her family; and (3) the amount and type of control she has over traits, diseases, characteristics of her child. This study complements the Surgeon General's “Family History Initiative” that focused on pre-set questions answered in a visual representation of the family tree model “pictogram.” Women's own stories of heritability weave health, family, culture, knowledge and belief into a narrative, one that behooves us as professionals to learn to hear, understand and value.

Learning Objectives:
1. Apply the principles of narrative competence when communicating with pregnant women about issues of what is inherited; 2. Understand pregnant women’s narratives of heritability along a control/no-control dimension; 3. Identify and discuss pregnant women’s concerns about the influences of environment, attitude and behavior on unborn children; 4. Recognize and articulate the role of family narratives in co-creating an understanding of heritability between providers and patients.

Keywords: Genetics, Pregnancy

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am one of the researchers of the study we will present at APHA. I have presented papers at approximately 20 conferences in the past 11 years.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.