New mothers' awareness of newborn screening, and their attitudes to the retention and use of screening samples for research purposes

Abstract

Aim

To explore new mothers' knowledge of newborn screening, and their attitudes towards issues surrounding sample retention and the potential for blood screening samples to be used for research.

Methods

A self-administered mail survey was sent to women who gave birth in Perth, Western Australia during January 2005. A total of 600 women completed the survey.

Results

It was found that women were aware of newborn screening, however desired further information in order to acquire a more comprehensive knowledge of the test. Further, women reported discomfort with the long-term storage of cards, but they were supportive of using blood samples for medical research, contingent upon the samples being de-identified and parental consent provided.

Conclusions

New mothers need to be provided with comprehensive information about the newborn screening test at a time which is conducive for the assimilation of this information. In addition, whilst supporting health related research using newborn screening samples, new mothers are keen for ethical issues to be sufficiently addressed prior to samples being systematically stored for extended periods of time.