Marsha Michie, PhD
I am an anthropologist and bioethicist.
I research ethical and social issues in biomedicine, ways that genetics
and genomics intersect with disability and identity,
and everyday religious practice.
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’.
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.
This commentary, on a proposal for unrestricted noninvasive prenatal whole genome sequencing, offers a critique based on the proposal’s disconnect from the practice of genomic medicine and prenatal care, and on its lack of recognition of the many regulatory and logistical barriers.
Prenatal cell-free DNA screening (also known as NIPT) has changed the landscape of prenatal care in just the past five years. It’s crucial to educate providers and patients about both the tests and the conditions they test for. The good news is that many efforts to do this are mobilizing – but there’s much more to be done.
Prenatal cfDNA screening has resulted in larger demands upon patient advocate groups from concerned patients. Challenges include funding limitations and a lack of consistently implemented standards of care and oversight.