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The state of knowledge regarding the human microbiome is advancing rapidly and a burgeoning new area of research and development is microbiome-based diagnostics. There is much that is not yet known about the implications of microbiome-based diagnostic or screening test results and it is possible that existing laws and regulations that did not contemplate these technological advancements are not adequate to address legal, regulatory, ethical and social concerns they raise.

Human genome editing is a powerful tool for creating precise changes to the genome, an organism+D6s complete set of genetic material. With these advances has come an explosion of interest in the possible applications of genome editing, both in conducting basic research and the potential to prevent, treat, and cure disease and disability. Genome editing could provide insights into reproductive failures and improve contraception and fertility treatments.

The purpose of this study is to assess assenting and consenting adolescents choices about learning genomic research results. We will refine existing decision tools and processes to promote informed genomic decision-making through the use of focus groups with adolescents and parents recruited from an existing genomic research study and a diverse, medically-underserved community to assess whether and how recruitment pathways impact perceived value, risks, and benefits of participation in genomic research and return of personal genomic information.

This K99/R00 Award is designed to generate scholarship and interventions to guide genomics companies towards more just practices. It does so through a five-year training and research project, which investigates perspectives from members of the genomics industry, and leverages them to inform normative analyses and identify feasible paths towards concrete change. The project addresses issues of price, access and industrial control, with a focus on the ethics of profit and social responsibility.

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.