The incorporation of genetics and genomics into medical care and the public domain raises new challenges for how we understand privacy and identity, concepts that have long been closely linked in American discourse.
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 This proposal seeks to investigate the ethical, social, and policy implications of a new kind of genetic information currently available to the public: polygenic scores for educational attainment (EA-PGS).
PROJECT NARRATIVE The sickle cell trait (SCT) screening program of the National Collegiate Athletic Association (NCAA) is regarded as one of the largest mandated genetic screening programs in the United States (US). Estimates suggest that over 2,000 NCAA Division I student-athletes with SCT will be identified under the screening policy and that, without intervention, about seven NCAA Division I student-athletes would die suddenly from a complication of SCT over a 10-year period.
PROJECT NARRATIVE Little is known about how health care providers (HCPs) will react to, and use, genomic information in patient care. The goal of this study is to understand how genomic information impacts HCPs and to make recommendations that will enhance HCPs' ability to successful integrate this information into clinical medicine.
PROJECT NARRATIVE The sickle cell trait (SCT) screening program of the National Collegiate Athletic Association (NCAA) is regarded as one of the largest mandated genetic screening programs in the United States (US). Estimates suggest that over 2,000 NCAA Division I student-athletes with SCT will be identified under the screening policy and that, without intervention, about seven NCAA Division I student-athletes would die suddenly from a complication of SCT over a 10-year period.
PROJECT NARRATIVE The proposed study will use surveys and in-depth interviews from National Collegiate Athletic Association (NCAA) athletes and their parents to determine the extent and nature of parental involvement sickle cell trait (SCT) screening. This project will assess whether parental characteristics predict differences in athletes' decisions to receive or opt out of SCT screening.