The value of your sample for research will be greatly increased if it is accompanied by data. This may include, for example, your age, gender and details of any medical conditions you may have and how well you are in the time after your sample was taken. In most cases this is now held on computers, which can raise concerns about how securely it is kept.

 

Retention of records which provide your identity is very strictly controlled through the Data Protection Act (more details are given on the website of the Information Commissioners's Office). In addition researchers must comply with the Caldicott Guidelines which restrict information on a strict "need to-know" basis.

 

In almost all cases there is no need for the researcher to know your name or where you live. These details may be retained by someone independent of the researcher so that additional information can be provided at a future date by, for example, looking at your medical records. This arrangement is called linked anonymisation . 

 

Linked anonymisation is also essential if you want you sample to be destroyed if you decide to withdraw your consent.

What about my data?