This study focuses on the case of prenatal cell-free DNA (cfDNA) screening, popularly known as non-invasive prenatal testing (NIPT). The long-term goal is to learn how and when to intervene with guidance, critique, and/or collaboration in order to help produce technologies that are ethically and socially valuable.
Recent advances in prenatal genetic testing have renewed concerns from some quarters that prenatal diagnoses serve primarily to enable elective terminations. Yet many women say they choose prenatal testing for a very different reason, one that is largely unexamined in clinical literature: ‘preparation’.
Research participants are pivotal stakeholders in genomic medicine. However, research participants often see their role in broader terms than researchers do, and that role frequently includes bonds of teamwork and reciprocity. Honoring the priorities and values of these participants goes beyond assuring informed consent.
I teach and mentor in the Bioethics department at Case Western Reserve University, where I direct the Research Ethics concentration for the MA program.
At the core of research on reproductive genomic interventions is a fundamental question: whether and how to involve pregnancy-capable people in clinical trials. This project is creating robust guidance for research in reprogenomics and a broadened consensus on these technologies among key professional bodies.