Biplab Kumar Halder shares how a relational autonomy framework informed his research regarding public funding of Noninvasive Prenatal Testing (NIPT).

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Born in the 1980s into a rural Bangladeshi family, I encountered sensitive issues surrounding childbirth and maternal mortality. I witnessed and heard personal stories of women giving birth in AturGhar—a separate labour room in the house —under unhealthy and unhygienic conditions. Those giving birth and sequestered in the AturGhar were considered impure and polluted because of postpartum bleeding. Communities internalized these birthing rituals as normal even though they were inhumane. I know a woman whose newborn died in AturGhar after catching a cold leading to pneumonia. While conditions have improved, with most births now occurring in maternity clinics, new norms have emerged, heavily medicalizing childbirth. In Bangladesh, many pregnant people now have to accept medically unnecessary C-sections, since this has become one of the new norms of childbirth.

During my doctoral studies in Canada, which began in 2017, I observed the rise of reproductive genetic technologies that are changing the prenatal care landscape. For instance, non-invasive prenatal testing (NIPT) is now routinely used to screen for chromosomal conditions like trisomy 21 in a fetus by analyzing cell-free fetal DNA in maternal blood. Several Canadian provinces and territories currently fund this test for eligible pregnant individuals, which has sparked debates over whether public funding should be allocated for this test. Disability rights advocates, such as Don’t Screen Us Out, argue that systematic screening of fetuses with Down syndrome reinforces the notion that disabled lives are less valuable—a concern known as the expressivist objection. Conversely, proponents of funded NIPT argue that this screening provides a fetus’s genetic information that can provide parents with information to help them decide whether to continue or terminate the pregnancy.

Photo Credit: flickr/NIH Image Gallery. Image Description: A conceptual image of a cell karyotype exhibiting trisomy, three copies of one chromosome.

My research examines these perspectives through the lens of relational autonomy, a conceptual framework in the feminist bioethics tradition that explores the influence of internal and external factors on women’s choices. I argue against public funding of NIPT, as public funding routinizes its use in prenatal care and perpetuates the geneticization of pregnancy and reproduction, ultimately creating adverse social and structural conditions for pregnant people’s reproductive autonomy.

Feminist scholars advocating the relational autonomy framework examine how systemic oppression undermines women’s autonomy. This perspective informed my research to examine how pregnant individuals are often conditioned to undergo NIPT and selective abortion. Many scholars raise concerns that the routinization of NIPT in prenatal care systems is problematic because it can systematically diminish the opportunity for a pregnant person to provide meaningful informed consent. Several empirical studies on prenatal screening suggest that pregnant individuals are more likely to make informed decisions when prenatal tests are viewed as optional rather than routine.

The North American prenatal care landscape has already been heavily geneticized, and public funding for NIPT reinforces societal expectations that knowing a fetus’ genetic information constitutes a significant part of pregnancy, and that every pregnancy deserves this test. Public perceptions that NIPT is easy, risk-free, and just another blood test, could cause pregnant people to feel that they are expected to agree to NIPT as it becomes increasingly normalized.

My research advocates for strengthening pregnant individuals’ autonomy competency — essential skills for realizing their authentic self and pursuing what they really want. Pregnant people should be empowered to identify oppressive norms and misleading information that can hinder their reproductive autonomy. We should aim for this goal in Canada as much as in Bangladesh. A recent study examined the English-language NIPT brochures of for-profit and not-for-profit NIPT companies worldwide and found that fifty-two percent of the for-profit companies misrepresent NIPT as a diagnostic test, whereas it is actually a screening test.

Instead of relying solely on information from NIPT manufacturers, insights from parents and individuals with disabilities are essential for a balanced understanding of genetic conditions and the realities of raising a child with a disability. By critically examining the current model of funded NIPT, my research suggests ways to enhance the relational support for reproductive autonomy and opportunities to think critically about evolving social norms around reproduction.

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Biplab Kumar Halder is a doctoral candidate in the Division of Population Health and Applied Health Sciences in the Faculty of Medicine at Memorial University, and an Associate Professor of Philosophy at Jahangirnagar University (JU), Bangladesh.