How will Generation Scotland ensure that participant information is kept anonymous?
Generation Scotland has put in place security mechanisms to ensure the absolute confidentiality of participants and to protect the genetic information that is collected. The institutions and research groups involved in Generation Scotland have a proven track record in maintaining the confidentiality of personal data. These groups have developed computer systems in partnership with the NHS to ensure that information that could identify a participant (eg name, address, date of birth, GP name) is kept separate from all other data about genetic makeup, health and lifestyle. Researchers who analyse the data will not be able to identify individual participants. One of the ways this is achieved is by assigning each participant a code which links that person’s samples and data but allows identifying information to be kept separately and securely. The code allows researchers to access an anonymous copy of information from health records by communication with NHS systems (record linkage).
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