Select Committee on Science and Technology Written Evidence


APPENDIX 2

Proposed Terminology for Categories of DNA samples/data

NameDescription Use (example)
i.  IdentifiedLabelled with personal identifiers such as Name or National Insurance Number. Clinical genetic tests for disease.
ii.  CodedLabelled with a clinical trial subject number that can be traced or linked back to the subject by the investigator. Samples do not carry any personal identifiers. Research into specific diseases and responses to medicines.
iii.  De-identifiedLabelled with a unique second number. There is a link between the first and second number. The second number is unknown to investigators and patients. Samples do not carry any personal identifiers. Research into specific diseases and responses to medicines when it may be necessary to return results or go back to coded samples for re-testing.
iv.  AnonymisedLabelled with a unique second number. The link between the clinical study number and the unique second number is deleted. Samples do not carry any personal identifiers. Research into non-specific diseases, responses to a range of medicines.
v.  AnonymousNo personal identifiers. Identification of the subject is unknown. Anonymous samples may have population information (eg the samples come from patients with diabetes, but no additional individual clinical data). Source of DNA material for sequencing and identifying DNA markers. General research into the disease area (eg Differential gene expression studies).




 
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