Breaking Barriers: Maternal Health and Genetics
A March of Dimes report in 2022 stated, unequivocally, that over 33% of counties in the US were considered maternity care deserts. Now, if you’re familiar with the public health version of ‘deserts’ it’s most commonly used in relation to food – food deserts where there remains an inexplicable lack of access to healthy and affordable produce. The idea of maternity care deserts is not all that different, though instead it demonstrates a critical lack of access to specialized maternity care in the United States, where our maternal mortality rate continues to worsen yearly. We are the worst country to give birth in the “industrialized” world! Our maternal mortality remains to be high, at a staggering 17 per 100,000 live births (which doesn’t even cover the increased three-fold risk for Black and Hispanic women), and this rate is more than double other high-income countries.
On International Women's Day, today, March 8, 2024, it is imperative to address these disparities and strive for equitable access to comprehensive maternity care, which includes genetic testing.
Maternity care deserts disproportionately affect marginalized communities, including low-income individuals, rural residents, and ethnic minorities. For example, in Iowa alone, 33 counties constitute maternity care deserts; of New Mexico’s 33 counties, 17 are. These deserts are not unique to just rural areas, however, as they can even be found in more densely populated and urban areas of the country. They often lack obstetricians, gynecologists, and other healthcare professionals specializing in maternal care, which directly impacts prenatal, labor and delivery, and postpartum care.
As such, in these particularly resource-deprived settings, access to specialized care, such as prenatal genetic testing, is low. Prenatal genetic testing plays a pivotal role in identifying genetic abnormalities and congenital disorders early in pregnancy, yet only 25-50% of people in the US take advantage of such testing. These tests enable healthcare providers to offer timely interventions, counseling, and support to expectant mothers and their families. But, the availability of such testing remains uneven, even without the complication of maternity care desert, with women facing significant barriers to accessing these essential services in general.
One study, which examined the risk associated with maternity care deserts in Louisiana, found an elevated risk of death due to obstetric causes during the pregnancy and up to one year postpartum. Though the impacts of maternity care deserts have long since been a significant concern, they have only been exacerbated in recent years. Among these concerns is the role of prenatal genetic testing, as an “add on” service that engenders accountability and decision making about a pregnancy’s viability and risk, including maternal risk, made moot in states with strict laws. This not only impacts those in these states, but disproportionately impacts those who are economically, socially, and medically marginalized.
Amidst this landscape, it is crucial then to consider that prenatal genetic testing can theoretically be an equalizer – it can potentially mitigate the disparities that impact the marginalized through earlier detection of risk stratification, ensuring earlier access to more specialized care. But access to genetic testing remains fraught with complications. According to the CDC, 66% of genetic counselors reside in major cities like New York, Boston, and Chicago, there remains a lack of certified training programs, long wait times, and minimal integration with direct clinical care. Rural areas, and regions like the Southern United States, face a great dearth of genetic counselors, with only 2.67 prenatal genetic counselors per 5000 high-risk births. We stand at an intersection of major reckoning, where policy, technology, and community must come together to move the needle forward, for there to be equitable and meaningful increased access to genetic testing in care deserts.
Policy interventions are crucial in addressing maternity care deserts and enhancing access to prenatal genetic testing. Governments and healthcare organizations must prioritize investments in maternal healthcare infrastructure, particularly in underserved areas. This includes incentivizing healthcare providers to practice in maternity care deserts, expanding telemedicine services for prenatal consultations, and implementing mobile clinics to reach remote communities.
“Access to care is paramount for mitigating risk and ensuring that individuals reap the benefits of early and informative genetic counseling.”
Access to care is paramount for mitigating risk and ensuring that individuals reap the benefits of early and informative genetic counseling. Thus, community engagement plays a vital role in raising awareness about the importance of prenatal genetic testing and combating stigma surrounding genetic conditions. Community health workers, patient advocates, and grassroots organizations can educate women about the benefits of genetic screening, address misconceptions, and empower them to make informed decisions about their pregnancies. Culturally sensitive outreach programs and support networks can ensure that women from diverse backgrounds feel supported and valued throughout their pregnancy journey, regardless of their genetic risk factors.
Most importantly, and perhaps most easily, technological innovations have the potential to revolutionize prenatal care delivery and expand access to genetic testing. Telemedicine platforms can bridge the gap between pregnant women and healthcare providers, particularly in rural and underserved areas. By leveraging these technologies, women can receive genetic counseling, schedule appointments, and access educational resources from the comfort of their homes, overcoming geographical barriers to care. Furthermore, advancements in non-invasive prenatal testing (NIPT) offer a less invasive and more accessible alternative to traditional diagnostic procedures, making genetic screening more accessible to a broader population of pregnant women – this is where My Precious Genes comes in.
This International Women's Day, let’s commit ourselves to changing the equation for women, and maternal care in our country. We are firm believers that today ought to be a reminder of the urgent need to address maternity care deserts and enhance access to prenatal genetic testing for all women. Together, we can create a future where every woman has access to comprehensive maternity care, regardless of her geographical location or socioeconomic status, ensuring the health and well-being of generations to come.
By: Sahana Narayan, MS, MSPH and Soujanya “Chinni” Pulluru, MD, co-founders of My Precious Genes
