Return of Research Results
Some of the research that may be carried out using samples donated to the Wales Cancer Bank may highlight findings that could be of importance to sample donors or their families. These results may be fed back to the donor's doctor. This is more likely to occur when projects are analysing DNA and changes in the DNA are noticed. This is unlikely to be a regular occurence and donors should not expect to receive individual results.
For results to be fed back they would need to fulfill three main (ACA) criteria:
This means the research that has generated the finding was either carried out in an accredited laboratory or has been confirmed in an accredited laboratory, so that we can be sure of what the laboratory has found.
Most research using samples from the Wales Cancer Bank will be done in research laboratories not diagnostic laboratories. Any potential findings would therefore have to be confirmed in a clinically accredited laboratory, which is any laboratory that meets certain standards and have been accredited by a professional body to perform tests for clinical/diagnostic requirements.
This means that the findings could have health or reproductive significance for the individual donor. An appropriately qualified expert would need to confirm that the finding would have relevance to the individual's health.
A huge amount of data can be generated in a research project and, although that information helps the research project, the majority of that information will not be known to have any relevance to discovering or predicting disease.
This means that something can be done with the knowledge of the finding, so the actions can be taken to prevent, delay, improve or treat a medical condition.
The Wales Cancer Bank is unable to perform either analytical or clinical validation tests on research results received back from research projects using samples from the biobank.