In the emerging era of precision medicine, there have been increasing calls for diversity and the inclusion of historically under-represented racial and ethnic populations in biobanking and precision medicine research. Recent findings suggest that the lack of diversity in genetic repositories may pose serious challenges to identify genetic variants that are clinically significant in certain populations. These concerns have been linked to ethical concerns over disparities in health and disease among racial and ethnic groups.
The North Coast Conference on Precision Medicine is a national annual mid-sized conference series held in Cleveland, Ohio. The conference series aims to serve as a venue for the continuing education and exchange of scientific ideas related to the rapidly evolving and highly interdisciplinary landscape that is precision medicine research. The topics for each conference coincide with the national conversation and research agenda set by national research programs focused on precision medicine.
This project will analyze how US white nationalists are appropriating, adapting, politically mobilizing and changing themselves in response to contemporary genomics research. White nationalists have gained public prominence since 2015 trying to bring greater visibility to their movement and policy ideas. Ideas from genetics have been prominent in their public pronouncements and in online discussions among white nationalists.
A major challenge for precision medicine research is including historically under-represented groups in numbers sufficient to ensure statistically valid inferences of the influence of relevant risk factors, including genetic contributions to disease risk. Precision medicine researchers have recognized the critical need to enhance diversity and have implemented a wide variety of approaches to achieve this.
From the passage of the country's first sterilization law in Indiana in 1907 until the 1960s approximately 60,000 people were sterilized based on eugenic criteria that sought to regulate the reproduction of the "unfit" and mentally deficient. California performed about 20,000, or one-third, of all documented sterilizations nationwide. Few empirical historical analyses of this practice are available. In 2007, while conducting historical research at the Department of Mental Health (now Department of State Hospitals) in Sacramento, Dr.
In 2010 the National Collegiate Athletic Association (NCAA) adopted a mandatory sickle cell trait (SCT) screening policy for student-athletes in its Division I (DI) colleges and universities. Currently, schools in all three divisions of the NCAA are implementing the policy. To date, very little published research is available on SCT in student-athletes or on the actual implementation of the NCAA screening policy. Many important questions remain regarding this controversial mandated genetic screening program.
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 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.
PROJECT NARRATIVE We will undertake epidemiological, historical and mixed-methods analysis of nearly 30,000 eugenic sterilization requests processed by three U.S. states: California, North Carolina, and Iowa, between 1919 and 1974. Working with de-identified datasets and using methods we developed during the R21 phase of this project, we will estimate and compare population-based rates of sterilization according to gender, age, ethnicity, nationality, diagnosis, state, and time period.