Implementation and Implications of Sickle Cell Trait Screening in the NCAA

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.

Implementation and Implications of Sickle Cell Trait Screening in the NCAA

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.

Implementation and Implications of Sickle Cell Trait Screening in the NCAA

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.

Disability, diversity and trust in precision medicine research: stakeholders engagement

Project Narrative Studies suggest that distrust is a major barrier for participation of minorities in Precision Medicine Research (PMR), though no study has examined the sources of (dis)trust and factors affecting views on trustworthiness of PMR among people with disabilities. This study proposes to engage with people with mobility, visual and hearing disabilities?the most common conditions in the U.S.?across racial/ethnic communities and with translational genomic researchers, the leaders in PMR, to close this gap.

The Ethics of Inclusion: Diversity in Precision Medicine Research

PROJECT NARRATIVE This study aims to analyze how diversity and inclusionary practices are conceptualized and operationalized by a range of stakeholders in precision medicine research in order to support the creation of policies and approaches that will achieve goals for greater inclusion of historically marginalized populations in biomedical research.