Immaculate Re-Conception: Redefining Health and Reproductive Risk Using Prenatal Genetic Testing
Since its inception in the 1970s, prenatal genetic technology has been reshaping reproductive decision-making and health in the United States. However, the field remains loosely regulated, and providers and patients are ill-equipped and uncertain about how best to use prenatal genetic testing for reproductive decisions. Additionally, professional training and policies do not yet engage diversifying patient populations who have varying family desires. These gaps have implications for the future of reproductive and disability justice.
Accordingly, this dissertation asks how patients and providers (reproductive physicians and genetic counselors) involved in prenatal genetic testing are negotiating genetic knowledge, framing diagnoses, and contending with tensions about health identities. Further, I question how these negotiations are patterned unequally and how this affects varied patient populations. Using mixed qualitative methods, I harness provider and patient-centered experiences and perspectives to (i) unravel the co-production of socio-medical knowledge, (ii) inform policy interventions, and (iii) develop a reproductive justice-grounded theory about the reconceptualization of health and bio-citizenship. As individuals navigate prenatal genetic testing, their decision-making calls into question definitions of healthiness, ability, and existence. By illuminating how health is reconceived in the era of routinized technology, this research will advance protections for diverse families and solutions for critical reproductive and disability issues.