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.

As genomic sequence data are being produced faster and at lower cost, the most significant challenge in clinical genetic testing today is variant classification. Currently, there are marked differences in variant classification among clinical laboratories, with clinically significant discrepancies in 29% of variants interpreted. Variants that were previously categorized as pathogenic are now known to be benign with the increasing availability of more ethnically diverse reference data, and this is issue is more common for individuals of non-European ancestry.

Candidate: Kayte Spector-Bagdady, JD, MBE, is an attorney and medical ethicist focused on the governance of secondary research use of human specimens and genetic data. Her long-term career goal is to become an independent investigator leading the development, conduct, and translation of mixed methods ethical, legal, and social implications research into improved genetic data-sharing governance. Research Context: “Precision medicine” and other advances in genetic research offer opportunities to improve diagnosis and therapy for millions of patients.

A large and highly heterogeneous group of individuals conducts genetic and genomic research outside of traditional corporate and academic settings. They can be an important source of innovation, but their activities largely take place beyond the purview of existing regulatory systems for promoting safe and ethical practices. Historically the gene-targeting technology available for non-traditional biology (NTB) experiments has been limited, and therefore they have attracted little regulatory attention.

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.

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.

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.

Through the combined study of individual variation in genes, environment, and lifestyle, precision medicine research offers the potential for discoveries that will improve human health. Spurred by the declining cost of next-generation sequencing, widespread use of electronic health records, proliferation of wearable devices, and other technological advances, the immense scale required for such research is now within reach. These same characteristics, however, escalate the challenge of protecting research participants.

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 Section Policies in the U.S. increasingly rely upon genomic information as a biometric to inform visa application processes, by verifying biological relationship claims or statehood claims, and broad DNA collection from non-criminals may help with missing persons, disaster victim, and terrorism investigations. The societal implications of these genomic applications are broad, with benefits and risks to the individuals undergoing testing, the communities in which they live, and the nation at large.