The Perceived Caregiving Interactions and Behaviors: Malfeasance, Nonfeasance, Uplift Scales are used to examine whether levels of nonfeasance, malfeasance, and uplift are associated with the perception that a member of a familial caregiving network is under-contributing. The scales include 19 questions about caregiving interactions and behaviors. Participants name each person in their familial caregiving network and indicate which members are engaged in the specified caregiving interactions and behaviors.
PROJECT NARRATIVE If healthy babies are sequenced near birth, when should genetic information relevant to later stages of their lives be revealed? There are different possible strategies for when this genomic information is revealed, and this research will determine their clinical feasibility, analyze their ethical, legal and social implications, understand diverse parents' preferences, and seek consensus on the necessary and desirable features of a strategy.
PROJECT NARRATIVE This study aims to investigate facilitators and barriers to long-term equitable partnerships in genomics research between communities and research institutions. We focus on legal and organizational infrastructures and practices that shape how decisions are made, by whom, and with what consequences, and changes that can support innovative and transformative approaches to equity, benefit and justice.
PROJECT NARRATIVE Genetic testing is increasingly used in ill neonates and holds promise to improve care, but the uncertainty of many genetic results complicates their application to clinical practice and poses an important hazard. Uncertainty can lead both clinicians and parents to misunderstand or misapply findings, resulting in biased treatment plans.
