Retention of Records
Retention of genetic family records and data – what are the issues?
What are genetic family records?
Genetic family records are health records that document and describe the inherited disease history within a family. They capture genetic and health information about the family members and include medical histories, relevant clinical findings, clinical decisions and actions, investigation results, treatments, and information provided to individual family members.
Why do we need to keep them for longer than other health records?
They contain transgenerational information, for example about the genetic causes of illnesses that occurred in a previous generation that may be relevant to the health of a younger generation. Arranging the right clinical screening or the right genetic test may depend on that family information.
How long should they be kept?
30 years is the usual generation time for people in recent centuries, so 30 years (since last contact with the family) is a reasonable current standard.
What about genetic and genomic data generated through mainstreaming?
The same principles apply to mainstream genetic information as to genetic family records. Precautions must be taken to protect family confidentiality.
How long should genomic data generated by a diagnostic laboratory be kept?
Genomic sequencing generates large volumes of data which have financial and environmental costs to store long term. They can be considered “working documents” and should be retained for a minimum of five years.
The final analysis and interpretation of diagnostic tests should be kept for 30 years, in the same way as other genetic records.
The rapid advances in knowledge about variant significance means that laboratories should consider contributing to and maintaining variant databases, accessible to all, local, national or international, to support future variant interpretation.
A more full discussion of these issues may be found in the BSGM Report: The Retention of Genetic Family Records.