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Knowledge and attitudes about privacy and secondary data use among African-Americans using direct-to-consumer genetic testing
Participants in this study by Ziegler and colleagues found secondary research use of their data acceptable depending on the type of research being pursued. However, about half stated that use by law enforcement was not acceptable.
Diverse parental perspectives of the social and educational needs for expanding newborn screening through genomic sequencing
Timmins and colleagues find that mothers are supportive of expanding newborn screening for both medical and personal utility and express a desire for more education and control of the process.
Sabatello and colleagues discuss areas of tension between the community-engaged research and data sharing movements including incentives and benefit sharing; group harm and power structures; and researcher engagement and responsibility sharing.