PROJECT NARRATIVE The purpose of this R25 Diversity Action Plan grant proposal is to create a program that will equip students with disabilities with mentoring, research, and curricular resources that facilitate their advancement towards becoming members of the ELSI community of scholars.
PROJECT NARRATIVE Advancements in prenatal genetic screening have significantly improved the identification of chromosomal abnormalities and heritable conditions during pregnancy, yet current standards for patient education in this domain are largely ineffective. The most effective approach to education about prenatal screening, is one-on- one genetic counseling, but due to the limited number of counselors this is not feasible, especially in rural and frontier areas.
PROJECT NARRATIVE Consumer protections are of rising importance to the sustainability of personal genomics and mobile health industries and realization of precision health, yet the extent of consumer protections available from the Federal Trade Commission (the primary federal agency in the United States responsible for ensuring online privacy and data security beyond medical settings, for the prevention of unfair and deceptive trade practices of companies that might not be governed by HIPAA, and for promoting innovation) are poorly characterized and have received surprisingly little ELSI re
This survey, created by Pearlman and colleagues, measures the attitudes of staff towards ethical practices in multiple areas of a healthcare organizations.
Healthcare institutions are implementing artificial intelligence (AI) at a rapid pace. The hope is that AI will improve the quality of care and reduce costs in the long run. However, the deployment of AI in healthcare settings also presents new ethical and legal challenges. For example, AI can reproduce health disparities and pose a risk to patients if human factors, like implicit or explicit bias, are present in the training data set or it lacks representation from population subgroups. AI also raises challenges for regulators like the U.S. Food and Drug Administration (FDA).
PROJECT NARRATIVE Families with children who have identified deficits in speech and/or sensory or musculoskeletal impairments without a known cause may be referred for genetic testing to find out whether there is a genetic cause. However, there is little research into how parents and caregivers use this diagnosis to inform decisions about therapeutic services, access to school services, or how a genomic diagnosis informs the practice of the community professionals who provide these services.
PROJECT NARRATIVE: Genetic counseling and health education are essential components of any early diagnosis program for sickle cell disease to ensure that risk results are effectively communicated by healthcare workers to those at-risk couples and their families. These are also important within the context of culture and health literacy because health beliefs and attitudes of the general public have a significant impact on health seeking behaviors that substantially influence reproductive decisions made by individuals and families.
PROJECT NARRATIVE A number of US employers are offering their employees confidential workplace genomic testing (wGT), a service that could inform employees of their genetic risk for certain treatable diseases but may also raise concerns about genetic privacy and workplace discrimination.