Genetic Databases and Biobanks: Who Controls Our Genetic Privacy?


In the past several years a growing number of private biotech companies have been collecting and storing our genetic information and bodily tissues and linking it to life-long medical histories. Many of these commercial companies have close relationships with the public sector: they rely on public institutions to get access to certain medical data and tissue samples, while the public sector relies on those companies for commercial exploitation of the research. Despite the unique nature of the information collected and the sensitivity of genetic databases, these private bio-libraries are largely unregulated in the United States. This article examines who has control over the assembly, use, and dissemination of genetic information in various types of genetic databases (e.g., public and private databases), and how this power should be managed based on its effects on the privacy and autonomy interests of individuals. The article analyzes three examples: the Icelandic Health Sector Database, the U.K. Biobank, and the operation of private, commercial bio-repositories in the United States. It further examines, via these three examples, the increased involvement of the private sector that collects and stores medical and genetic information and the growing partnerships between the private and public sectors in the genetic realm. This analysis reveals the potential abuses of our personal genetic information by those who have control over it, and the need to place limitations on the uses of this information. This article calls for the adoption of industry-wide fair information practices and proposes a set of fair information principles tailored to meet the specific privacy needs in the genetic realm.


Health Law and Policy | Internet Law | Science and Technology Law

Date of this Version

February 2006