by Stephanie A. Kraft, JD
The modern experience of pregnancy is distinctly “not your mother’s pregnancy”. Ever-expanding options for carrier, prenatal, and newborn screening offer today’s pregnant women countless choices when it comes to genetic testing—choices that were unheard of, even unfathomable, just a generation ago.
Prenatal screening and diagnosis have long challenged the tension between individual reproductive autonomy and society-wide respect for persons with disabilities. New genetic and genomic technologies have the potential to either heighten or relieve this tension, depending (in part) on how they are implemented. Shakespeare argues that the advent of prenatal whole genome sequencing can remind us that “everyone is potentially disabled” due to one genetic mutation or another, but at the same time he cautions that the widespread use of this technology may lead parents to focus on individual genetic imperfections rather than accepting their children as the “flawed, vulnerable, limited and mortal” people that they are. “No baby is perfect,” he writes as a reminder to the modern pregnant woman who might be considering how to navigate her prenatal genomic options.
As a modern pregnant woman myself, I read Chen and Wasserman’s target article with both academic and personal interest. Chen and Wasserman propose an unrestricted framework, bolstered by a robust informed consent process, for the eventual clinical implementation of noninvasive prenatal whole genome sequencing (NIPW). They argue that by not limiting testing by severity of conditions, their approach will neither devalue the lives of individuals with disabilities nor encroach on reproductive autonomy. Some commentators applaud their framework’s potential to minimize biases against people who have subjectively “bad” genetic conditions.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.