U.K. Launching Genetic Sequencing Database for Medical Research

The United Kingdom’s National Health Service is launching a large-scale database that will include the genetic sequences of as many as 100,000 U.K. residents with cancer and rare diseases, Reuters reports.

Project Details

Participation in the database project will be voluntary, and patients will be able to opt out without affecting their care.

The U.K. government has allocated $160 million over the next three to five years to fund the project (Kelland, Reuters, 12/10).

Certain aspects of the project have yet to be decided, such as:

• When the sequencing will start;
• Who will perform the sequencing and analysis; and
• Which patients are eligible for the genetic testing.

Project Goals

The database project aims to improve physicians’ understanding of patients’:

• Genetic make-up;
• Condition; and
• Treatment needs.

The database also would allow researchers to compare the genetic profiles of large numbers of patients, which could lead to the development of new targeted cancer treatments.

Sally Davies — chief medical officer for England — said the project “opens up the possibility of being able to look at the three billion DNA pieces in each of us so we can get a greater understanding of the complex relationship between our genes and lifestyle” (Walsh, BBC News, 12/10).

Privacy Concerns

Despite the potential benefits of the database, privacy advocates are raising concerns that patients’ genetic information could be shared with third parties, such as drug companies. Some advocates say that organizations with access to the database potentially could use the genetic codes to identify and track individual patients (Reuters, 12/10).

However, U.K. officials say that the database only will be used for medical research (BBC News, 12/10).

In addition, Prime Minister David Cameron’s office has stated that the genetic data would be made anonymous before it is stored (Reuters, 12/10).