Governance of Genetic Information

Genetic science is advancing at an astounding pace: the cost of sequencing an individual genome has dropped dramatically in the last decade. These advances bring both the promise of benefits, as well as new threats to open society. A case in point is the explosive growth of forensic DNA databases across the world, which is taking place with little public debate or oversight. The Information Program is beginning a program of work to protect the basic rights of individuals and vulnerable populations affected by the proliferation of genetic technologies. Building on its experience in the intellectual property area, it will also promote a governance regime for genetic information that supports open society values.

Forensic DNA Databases

In 1995, Britain established the world’s first national DNA database. Initially, this database was set up to store the DNA of people convicted of serious crimes, but this database now contains the records of about five million people, around a million of whom have never been convicted of any crime. Similar databases are now being rolled out in many countries around the world. In some countries, a database of the entire population is proposed.

The Information Program will support capacity building and networking of civil society to enable more effective engagement with governments as they set out to develop DNA forensic databases and arrange for cross-border sharing of genetic data. We are interested in facilitating the development of a human rights compliant standard for forensic DNA databases. And we believe it is critical to explore better oversight mechanisms for forensic laboratories and best practice for handling the analysis of DNA.

Gene Patents

A study in 2005 revealed that around 20% of human genes are subject to patents in the United States. While the purpose of the patent system is to encourage innovation, it has become clear that gene patents often inhibit biomedical research and interfere with patients’ access to information and care. The Information Program, together with the Open Society Public Health Program, is exploring avenues for limiting gene patents.

Funding Information

If you are considering applying for funding under this initiative, please email the relevant program manager (see link, below) with a brief description of your project. They will be able to advise you if your proposal is suitable for funding from the Open Society Fuondations, and guide you through the application process from there.

View contact information for this initiative.