California 2020 State Bills (California 2020 AB 2222)

Requires a genealogy company, defined as a person that is not subject to HIPAA and obtains the DNA of a person through submission of a saliva sample or other methods, to display a notice in all advertising, it’s privacy policies, at the point of sale of the product, and on product packaging. The notice must contain information about the company's privacy policy. 2/27/2020 Referred to Committee on Privacy and Consumer Protection. Bill Status: Pending

Center for Integration of Research on Genetics and Ethics

Modern genetic research gives us unprecedented ability to understand and manipulate fundamental biological processes. Our growing potential to understand and shape the world in genetic terms also seriously challenges basic beliefs and ethical norms. At the same time, values and norms affect the way genetic research is designed and conducted. Despite the significant ethical and societal implications of emerging genetic research, there are few venues for geneticists to participate in interdisciplinary research and to discuss these issues.

Mapping the Intersection: Self-identification and Genetic Ancestry

Assignment of individuals to categories of race, ethnicity and ancestry impacts health and public policy, yet the practice remains both scientifically and culturally controversial. The established means of determining race and ethnicity, as commonly used for census and health questionnaires, is self-identification. However data is accumulating from social science research showing that an individual's reported ancestry is dependent on social and cultural context. At the same time, modern genetic studies have identified robust markers of ancestry.

Developing and Evaluating Patient Centered Tools for Clinical Classification of Variants of Uncertain Significance

Targeted gene sequencing using large panels has become an increasingly important strategy for evaluating disease risk for many inherited diseases. Expanded gene panels are more sensitive than single gene testing and often more cost effective than sequential testing, leading to additional diagnostic and prevention opportunities. However, these panels also identify rare variants of uncertain clinical significance (VUS) in many patients.

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