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.
Parents of people with Down syndrome responded to an anonymous online survey on potential genome-based interventions. Their responses were significantly affected by their assessments of the impact of DS on their children’s and their families’ lives.
Western moral assumptions permeate the debate over how to use cell-free DNA screening to identify genetic conditions in a developing fetus. Here we highlight 8 key insights from an international, interdisciplinary workshop on cell-free DNA screening in different cultures and contexts.
Implying that genetic counselors may have conflicts of interest (COI) seems to strike at the heart of the profession’s integrity and identity. Yet it is crucial that genetic counselors acknowledge that they, like all medical professionals, can and do have COI, and work to manage them.