American Civil Liberties Union : Genetic Repositories

The Technology & Liberty Project monitors the interplay between cutting-edge technology and civil liberties, actively promoting responsible uses of technology that enhance privacy and freedom, while opposing those that undermine our freedoms and move us closer to a surveillance society.

Genetic Repositories

Recent advances in genomics, bioinformatics and data mining are encouraging a worldwide proliferation of "gene banks" – large collections of blood or tissue samples that usually include genetic information derived from those samples as well as linked medical, family history or lifestyle information. The use of these biological repositories for genetics research could lead to advances in public health, such as the identification of genetic factors in diseases, or the development of diagnostic tests. On the other hand, they also create yet another avenue for privacy infringements, stigmatization and discrimination. The ACLU is currently exploring the implications of this emerging arena of science and medicine.

In 2006, the National Institutes of Health proposed a rule for creating a centralized repository for storing, sharing and using genetic information from individuals. Read the ACLU's comments and concerns in regards to this proposed rule (PDF) >>

IN THIS SECTION

RELATED INFORMATION