Project Narrative Racial/ethnic disparities in genomic testing and research participation threaten to exacerbate inequities in health outcomes, particularly in pediatrics.3-7 Given that current genomic privacy mechanisms (e.g., de-identification, broad consent) do not adequately address the concerns of historically disadvantaged populations related to genomic testing and research,1-3 there is an urgent need to understand the range of perspectives on genomic data privacy held by parents from diverse sociodemographic backgrounds.
PROJECT NARRATIVE Investigative genetic genealogy, a technique used by law enforcement to generate leads in criminal cases through searches of genetic genealogy databases, raises important privacy concerns for database participants and their families. This project will measure public preferences related to law enforcement participation in genetic genealogy databases and develop best practices for investigative genetic genealogy that operationalize these preferences by engaging experts and relevant constituencies.
This 20-item survey by Guerrini and colleagues can be used to assess public opinion on police access to genetic genealogy databases. The survey assesses participant characteristics and views on the purposes that law enforcement should be allowed to search genealogical websites and social media accounts, whether law enforcement should be allowed to require direct-to-consumer testing companies to reveal information about their customers, and other topics.