Family Stories: Privileging the "Backstories" of Genetic Screening

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.