Stratified Reproduction and Prenatal Genetics in a Post-Roe United States
From the Series: After Roe
The American College of Obstetrics and Gynecology recommends that all pregnant individuals be offered fetal genetic tests, including ultrasound, serum screening, cell-free DNA (cfDNA) screening, and chorionic villus sampling or amniocentesis (Rose et al. 2020). However, previous research shows that this offer is often poorly understood and/or experienced as nonoptional. Unsurprisingly, the most marginalized are also those with the least access to informed decision-making for these tests and available actions based on their results. This unequal access—not only to prenatal care but to the information and support necessary to navigate it—is a classic example of stratified reproduction (Colen 2006).
The use and management of genetic testing in pregnancy takes on additional weight now that the Supreme Court’s Dobbs v. Jackson WHO has invalidated a Constitutional right to privacy previously codified in Roe v. Wade’s protection of abortion access. The decision sends the power to regulate or ban abortion back to individual states, with a wide range of repercussions. Many states had already enacted Targeted Regulation of Abortion Providers (TRAP) laws, keeping abortion technically legal but severely limiting access. The need to travel, sometimes long distances, to reach an abortion provider and pay for transportation, lodging, and childcare functionally places abortion care out of reach for many. Scholars and activists have shown that restrictions on abortion and other reproductive health care disproportionately and intersectionally impact those who are minoritized, have lower socioeconomic status, and/or have disabilities (Coates 2021). Yet these populations also face disproportionate risks if they continue a pregnancy: Black women, especially, experience pregnancy-associated morbidity and mortality three to four times more often than non-Hispanic Whites (Bryant et al. 2010). Disability-specific abortion bans also intersect with disproportionate risks to people of color via environmental toxins, an example of the “dysgenic state” (Bridges 2022).
Post-Dobbs, state laws will continue to shift unpredictably for the foreseeable future. Staying informed about financial and legal restrictions on abortion is onerous and nearly impossible for many who lack legal and medical resources. Uncertainty around legality causes patients and providers to self-censor or avoid seeking or offering services for fear of legal consequences. In this chaotic landscape where it is unclear what’s legal where, all abortion-related care is increasingly treated as illegal or at least high risk. The impact on prenatal genetics continues to unfold. Several states have passed so-called reason bans outlawing abortions motivated by fetal sex, Down syndrome, or other genetic conditions. Enforcement of these bans depends on the use of prenatal genetic tests, implicating testing decisions and results in potential criminal cases. Such laws criminalize abortion providers if they have reason to believe that an abortion is being chosen based on fetal characteristics or if an outside observer could argue that they reasonably should have known. Deliberately vague language places patients at risk of prosecution for pregnancy loss after a prenatal genetic finding, even though many genetic conditions have higher rates of miscarriage.
Even without “reason” bans, many parents will lack access to reproductive options when faced with a serious fetal condition. The earliest available prenatal tests—early ultrasounds, or cfDNA screening at nine to ten weeks postfertilization—will not allow time for posttest termination decisions in the growing number of states that ban abortion at fifteen or even six weeks gestation. While many parents will still use prenatal genetic information to prepare for the birth of a child, these bans prevent parents from making informed decisions about pregnancy continuation in cases of significant or life-limiting anomalies. Anthropologists have long tracked the complex social and cultural resources that parents use to make their decisions (Browner and Press 1995; Rapp 1999). Ambivalence about pregnancy continuation will deter patients from seeking early prenatal care—risking their own health, endangering the health of the pregnancy, and worsening entrenched healthcare insecurity in poorer communities. Health care insecurity includes not only the availability of medical services but also the ability and willingness to access them in a timely and secure manner. Lack of health care security is a major driving factor in the American epidemic of infant and pregnancy-associated morbidity and mortality.
Initially, reproductive health policy analysts hoped that the ease of offering cfDNA screening in communities with scarce local medical resources might help to alleviate health disparities. This optimism led to the rapid introduction of cfDNA into several safety-net prenatal care programs, including those in California and Florida. However, while reimbursement for cfDNA is increasing, investment in provider training, counseling, and patient information lags. In Northeastern Florida, for example, most pregnant women in the safety net system have access to cfDNA but not to pretest counseling (or true consent); very few can report what testing they had or the clinical implications of the results (Riggan, Condon, and Allyse 2022). Community clinics providing general prenatal care do not share medical records with hospital systems conducting deliveries; no one, including pregnant individuals themselves, has a complete picture of the state of the pregnancy. In settings where any pregnancy loss is treated as a potential abortion, such noncommunication may be weaponized against those of color, those with disabilities, and those without financial resources. Increasingly, prosecutors require pregnant individuals to prove that a miscarriage was not an abortion, rather than accepting that spontaneous miscarriage is the most likely event; inevitably, prenatal genetic tests then become part of surveillance mechanisms aimed at criminalizing pregnancy loss (Paltrow, Harris, and Marshall 2022).
For many Americans, therefore, the proliferation of abortion bans in the United States will heavily impact the provision and sequelae of prenatal genetic testing, whether or not pregnant individuals intend to consider termination. Many people who continue a pregnancy after discovering a genetic condition will be targets of surveillance and potential legal action for miscarriages and necessary postmiscarriage health care. And these consequences will continue to be heavily stratified, exacerbating health care insecurity for families experiencing medical and social marginalization. In a case of double jeopardy for families living with health care insecurity, prenatal genetic tests will not only provide fewer options but will add another form of pregnancy surveillance to the precarity in which their reproductive futures play out.
Bridges, Khiara M. 2022. “The Dysgenic State: Environmental Injustice and Disability-Selective Abortion Bans.” California Law Review 110:297.
Browner, Carole H., and Nancy Press. 1995. “The Normalization of Prenatal Diagnostic Screening.” In Conceiving the New World Order: The Global Politics of Reproduction, edited by Faye Ginsburg and Rayna Rapp, 307–22. Berkeley: University of California Press.
Bryant, Allison S., Ayaba Worjoloh, Aaron B. Caughey, and A. Eugene Washington. 2010. “Racial/Ethnic Disparities in Obstetric Outcomes and Care: Prevalence and Determinants.” American Journal of Obstetrics and Gynecology 202, no. 4: 335–43.
Coates, Audrey. 2021. “It’s a Trap! Low-Income and Rural Women Face Consequences of Medication Abortion Restriction.” Evidence-Based Practice 24, no. 11: 6–7.
Colen, Shellee. 2006. “Stratified Reproduction and West Indian Childcare Workers and Employers in New York.” In Feminist Anthropology: A Reader, edited by Ellen Lewin, 380–98. Malden, MA: Blackwell.
Paltrow, Lynn M., Lisa H. Harris, and Mary Faith Marshall. 2022. “Beyond Abortion: The Consequences of Overturning Roe.” American Journal of Bioethics, no. 8, 1–13.
Rapp, Rayna. 1999. Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. New York: Routledge.
Riggan, Kirsten, Niamh Condon, and Megan Allyse. 2022. “Ep466: The Use of Next Generation Prenatal Screening in a Low Resource Setting among Non-Hispanic Black and Hispanic Patients.” Genetics in Medicine 24, no. 3: S296–97.
Rose, Nancy, Anjali Kaimal, Lorraine Dugoff, and Mary Norton. 2020. “Screening for Fetal Chromosomal Abnormalities: ACOG Practice Bulletin, Number 226.” Obstetrics & Gynecology 136, no. 4: e48–69.