Research highlights financial hurdles to fair prenatal tests in Australia

New research from Monash University has found substantial variation in prenatal screening across Australia, with health care professionals reporting ongoing challenges in providing equitable access and pretest counseling.

The research is published in the journal BMC Pregnancy and Childbirth.

In Australia, pregnant people can choose to have a screening test to detect common genetic conditions, such as Down syndrome, in their unborn baby. Noninvasive prenatal testing, or NIPT, is recognized as the most accurate screening test for such conditions, but it currently has no Medicare rebate. While most health care practitioners recommend NIPT to their pregnant patients, this research study suggests that the $500 price tag is a major barrier to equitable care.

The study, "Disparities in integrating non-invasive prenatal testing into antenatal health care in Australia: A survey of health care professionals," surveyed several health care professional groups about their clinical experience of providing NIPT. While previous studies have focused on the views of obstetricians, this is the first study of its kind in Australia to survey a cross section of health care professionals, providing a more comprehensive overview.

The study's lead researcher, Dr. Molly Johnston from the Monash Bioethics Centre, said understanding disparities in care is crucial to improving the delivery of prenatal screening services in Australia.

"Lack of knowledge around the test, increasing time demands on health care professionals, and cost barriers are having an impact on the equitable provision of prenatal screening," Dr. Johnston said. "Improved education for health care professionals involved in NIPT is critical to ensuring patients are given the opportunity to access the information they want about their pregnancy and promoting informed decision-making."

Researchers conducted an anonymous survey with health care professionals involved in prenatal testing from September to October 2022. A total of 475 health care professionals responded to the survey, comprising obstetricians, GPs, midwives and genetic specialists. The survey covered topics including knowledge of NIPT, test delivery, pre- and post-test counseling, future applications of NIPT, and test data management.

The research found the greatest barriers to NIPT were cost (94.1%), patient awareness (31.6%) and health professionals not informing patients of the option of NIPT (26.7%).

The study also found differences in who the test is offered to, with providers in private practice or metropolitan areas more likely to offer the test to all pregnant patients, than providers in the public sector and those working in regional and remote areas.

Another key point of diversity in NIPT provision is whether patients are offered a range of options or tests from which to choose. Many test providers now offer expanded NIPT for a range of other conditions, including sex chromosome conditions and sub-chromosomal copy number variants. Just over one third (37.4%) of health care professionals stated they either do not offer or infrequently offer expanded NIPT due to limited time available to consult on options, or a lack of awareness or knowledge of what options are available.

Maternal fetal medicine specialist Professor Lisa Hui said ensuring patients are properly informed about their screening options promotes reproductive autonomy.

"When patients are not given the choice between expanded and basic NIPT, they are not given an opportunity to determine how much they want to know about their pregnancy," Dr. Hui said.

A key concern for health care professionals was around overall adequacy of pre- and post-test counseling, with many emphasizing the impact of time constraints on the quality of pre- and post-test counseling and the need for more funding.

"The provision of NIPT as well as genetic counseling often falls to a wide range of health care professionals, including those in general practice. Current Medicare structures encourage short appointments in general practice, which are not conducive to the comprehensive counseling needed, particularly following a high chance test result," Dr. Johnston said.

Researchers said increased education for health care professionals, more time and resources for counseling, reviewing and adapting current models for informed consent, standardizing offers of types of NIPT, and decreasing cost barriers for patients would ensure that Australians continue to receive a high standard of antenatal care.