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The current structure of biobanks in the United States is missing substantial federal and state policies to address and resolve people’s privacy concerns as well as sufficient education for people about the laws that are there to protect their genetic privacy. Medical, research, and commercial DNA databases all generate privacy concerns largely because of the misunderstanding between what people anticipate from giving their genetic information to these biobanks and what actually occurs. Because of the various risks that are associated with non-forensic biobanks, it is necessary to have stringent regulations and federal oversight so that scientists may be able to use donated genetic data to research diseases without compromising the genetic privacy of donors as well as their close relatives.
The new CRG report: Do You Know Where Your DNA Is? Genetic Privacy and Non-Forensic Biobanks explores the various forms of biobanks in the US, their privacy limitations, the current state of regulation and the need for reform.
The report can be accessed at the following link and on the homepage of the CRG website: http://www.councilforresponsiblegenetics.org/pageDocuments/L0Z6I8MLM3.pdf