Genetic research and DNA sample storage
The main function of the NDNAD has been to provide matches of DNA profiles from crime scene samples with the DNA of known individuals. This kind of analysis does not require any interpretation of the genes found in a person's DNA and is in that way similar to fingerprint matching.
However, DNA has the potential to be much more powerful. It can, for example, identify a person's relatives, or can tell if someone has certain genetic conditions such as Sickle Cell Anaemia or Huntington's disease. Research is also being undertaken to try and use DNA to identify someone's racial origin or appearance.
What are the concerns?
Because DNA samples contain unlimited genetic information, including health-related information, and information about who may be related to whom, there is particular sensitivity about who has access to them.
One major concern is that people's names and other personal information collected by the police are being sent to the commercial laboratories which analyse the DNA, along with the biological samples. This risks private information being revealed to people working in the labs. The companies themselves are concerned about this practice, as shown in LGC Ltd's evidence to the Home Affairs Committee.
Another concern is that research that attempts to link differences in a person's genetic information with traits such as ethnic appearance is very controversial because it is often based on misleading assumptions about race.
Research on most collections of DNA - known as biobanks - is governed by the Human Tissue Act but the Act does not cover the collection or use of DNA for "purposes related to the prevention or detection of crime". There is a similar exemption in the Data Protection Act to the requirement for consent to collect and process genetic data.
Researchers have been allowed to use both the DNA profiles on the National DNA Database and the linked DNA samples for genetic research. Unlike other genetic databases, the people on it have not been asked to give their consent to this research.
Freedom of Information requests
In 2006, GeneWatch undertook a series of requests under the Freedom of Information Act to find out what research is being undertaken and how the decisions on access are made. The following summarises the main findings.
The requests revealed:
- lack of transparency about what research is being done and how decisions are made, and failure to keep complete records;
- approval of controversial genetic research on ethnicity, using both the Database and DNA samples, including analysis of the male Y-chromosome without consent;
- continued lack of any ethical oversight;
- failure to distinguish between projects to assess and/or improve the Database and research to generate new commercial products;
- retention of a "mini-database" by at least one commercial supplier of DNA profiles to the Database and failure to properly oversee research by such suppliers;
- lack of democratic oversight for new operational uses, such as familial searching (searching for relatives of a suspect), or searching for named individuals or specific DNA profile information;
- lack of transparency about who can receive specific or named DNA profile information (including foreign countries), or why such requests are being made and granted.
Use of the DNA database and samples for research is currently suspended while the NDNAD Ethics Board develops guidlelines on its use.
Police DNA database 'is spiralling out of control'- The Observer (16 July 2006)
Using the police National DNA Database - under adequate control?
18th July 2006
This briefing describes research and non-operational uses of the National DNA Database (NDNAD). It is based on a series of Freedom of Information requests made by GeneWatch to the NDNAD's Board. It reveals that DNA samples are being used for controversial genetic research without consent and that a commercial company has kept a "mini-database", which includes its own copies of DNA profiles and other information.
Reply to freedom of information request - 8th May 2006
16th July 2004
Reply to freedom of information request - 19th May 2006
16th July 2004
Reply to freedom of information request - 17th February 2006
16th July 2004