Factors affecting couples' decision making about expanded prenatal cell-free DNA screening.

Purpose: To assess intended parents' preferences about expanded prenatal cell-free DNA screening.

Methods: A survey was administered to couples who were pregnant or trying to conceive. Partners within couples were independently asked about willingness to seek prenatal cell-free DNA screening for diseases and traits that varied by severity, treatability, age of onset, and reliability.

Renegotiation, uncertainty, imagination: Assemblage perspectives on reproductive and family planning with an Inborn Error of immunity.

Advances within the new genetics expand our understanding of the scope and presentation of inherited conditions, particularly to include incompletely penetrant and variably expressive conditions. These features can complicate patients' reproductive and family planning processes, in part because they expand the possibilities of life with an inherited condition. Despite many inquiries into reproductive planning with an inherited condition, accounts of experiential knowledge and reproductive planning fail to adequately describe the uncertainties experienced by people living with incompletely penetrant and variably expressive conditions.

Lived experience with sickle cell disease: Predictors of altruistic participation in clinical research.

Researchers have found that research altruism motivates research participation, but little is known about what aspects of lived experience motivate this socially focused altruistic participation when participation emerges at the intersection of illness, identity, and injustice. This study examines adults living with sickle cell disease (n = 235) in the United States enrolled in the INSIGHTS clinical research study to investigate what aspects of the sickle cell disease lived experience, understood here as pain and illness perception, are associated with reporting subsidiary and primary altruistic motivations for participating in clinical research. Results from two binary logistic regressions indicate that pain frequency is positively associated with greater odds of reporting subsidiary altruistic motivations, and pain frequency and pain severity are positively associated with greater odds of citing primary altruistic motivations.