Skip to main content

This focus group guide (see the methods, focus groups section of the linked article) was designed to assess interest in a research ethics consultation service. It includes a set of questions for biomedical researchers designed to assess their perceptions of ethical and social questions related to their research, ideas about the role of bioethicists, the kinds of research that is controversial, the role of scientists in dealing with controversy, and other topics.

Prenatal screening and testing technologies using genetic methods are rapidly expanding, offering increasing amounts of genetic information about the fetus. However, research shows that women from underserved populations are less likely to receive or accept prenatal genetic services, leading to discordant birth outcomes. We propose to explore the barriers to access and acceptance of prenatal genetic care among women from underserved populations.

This project is designed to improve our understanding of when to best communicate parental genetic risk information to minor children by assessing the minor?s readiness to receive such information from the perspective of the parent and the minor child themselves. We will interview parent-child pairs who have already communicated about parental genetic risk information to richly characterize experiences with, perspectives on, and implications of the communication event(s).