Attitudes of new mothers towards genetics and newborn screening.

Objective: To evaluate new mothers' opinions of genetics and newborn screening.

Setting: An Australian tertiary referral hospital.

Population: 232 women who delivered a liveborn infant and had received written and verbal information on newborn screening from midwifery staff during their antenatal care.

Methods: Participants were interviewed within 24 hours of blood being taken from their baby by heel prick for the newborn screen. Non-English speaking women were included using medical interpreters. The questionnaire evaluated opinions about newborn screening and parental consent. The opportunity was used to also question their views on the impact on lifestyle and discrimination of a theoretical diagnosis of genetic disease or carrier status in their baby.

Main Outcome: Descriptive data on mother's attitudes.

Results: 200 women consented to participate in the study (86.2% response). New mothers supported newborn screening programs where outcomes could be used to prevent or reduce the severity of a disease (85-86% support), but were less supportive if screening had been used to assist with future family planning (65%). The majority of women (86%) felt that parental consent was mandatory before newborn screening tests were performed. A similar number felt that consent would be required before blood samples could be used if a National DNA library were to be created. The majority of women expressed concern that a child with a genetic illness would face discrimination and difficulty obtaining insurance or employment. A third of women felt that even a carrier of a genetic illness would face similar discrimination.

Conclusion: Acceptance of newborn screening programs is high but mothers consider the need for consent to be mandatory. They have concerns about discrimination children with genetic illnesses may face.