Motivations of women with sickle cell disease for asking their partners to undergo genetic testing

Women with sickle cell disease (SCD) now survive well into adulthood, thus knowledge about their reproductive decision-making is becoming increasingly important to both social and medical audiences. Through in-depth interviews with 28 adult women with SCD, I explored their motivations for asking their partners to undergo prospective genetic testing. The analysis revealed several sources of motivation including participants' concerns about the potential physical suffering of future children; potential feelings of guilt and stigma; determining whether to enter or remain in an intimate relationship; and finally, their mother's lack of insisting on their father's undergo testing. These findings offer insight into the pre-conception reproductive decision-making behavior of women with SCD.