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’.
Genetic screening and testing increasingly offers opportunities to predict, prepare for, and sometimes avoid disabling conditions. As patients, parents, caregivers, and genetic relatives, genetic information alters our understandings of disability and normalcy, and our sense of responsibility.
Advancements in prenatal genomics research and medicine have brought renewed ethical worries about eugenics and its philosophy of producing “good stock” or “well born.” Today our concerns are not only the import of valuing the “well born,” but the many meanings and values implicit in being “born well.”
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 am the director of the Responsible Conduct of Research course for clinical fellows at UCSF. I have taught multiple courses in anthropology and bioethics, and I have mentored students in both of these fields, as well as in qualitative research, analysis, and writing.