The advent of clinical genome sequencing to identify patients at risk for serious diseases and to tailor treatments promises to greatly improve health outcomes and provide a foundation for the delivery of Precision Medicine. However, even as laboratory methods to perform sequencing become highly efficient, uncertainty around the optimal breadth and economic value of sequencing as well as ambiguity around which individuals should be tested presents a critical barrier to wider use.
Addictive disorders are increasingly conceptualized as biomedical diseases with genetic roots. While conventional wisdom has suggested that attributing addictions to genetics should have many benefits, there is reason to suspect that it could have some unintended, negative consequences. In particular, genetic explanations for addictive disorders could lead to the perception that people with addictions lack agency or self-efficacy to overcome their symptoms and to the belief that non-biomedical treatments, such as psychotherapy, are unlikely to be effective.
Background: There is great interest in the implementation of genomic medicine, i.e., using genomic information to inform patient care. As a result, patients with medically actionable (preventable and/or treatable) genetic conditions are being identified, often as an unsolicited secondary finding or a result of screening in the absence of a clinically known condition. The identification of a previously unsuspected medically actionable condition enhances the ability of health care providers' (HCPs) to intervene early to prevent disease.
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.
Great strides are being made in identifying early signs that put people in a 'high risk state' for illnesses, enabling identification during what has been called a 'high risk state'. Individuals in a 'high-risk state' are starting to show signs of a disorder, but do not yet have the full disorder. At the same time, advances are being made in identifying genes associated with 'high-risk states'.
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.
PUBLIC HEALTH RELEVANCE: Researchers engaged in conducting genetic and genomic science are significant players in advancing biomedical science and health care. Through their work, they are a vital part of the ethical, legal, and social outcomes of science, but there is a gp in knowledge concerning how genomic scientists navigate the complex ethical, legal, and social issues related to their research.
Project Narrative. Advances in psychiatric, neurologic and behavioral (PNB) genetics have brought the prospect of predictive and diagnostic genomic testing for many PNB conditions closer to clinical application. The potential for such findings to profoundly affect core elements of personhood?including identity, perceived responsibilities, and life trajectories?makes it essential to understand the impact of such information on individuals and families.