Returning Actionable Findings

Policy on Returning Actionable Results.

Viking Genes team talking with Prof Zosia Miedzybrodzka of the NHS Grampian Clinical Genetics Service
Viking Genes team talking with Prof Zosia Miedzybrodzka of the NHS Grampian Clinical Genetics Service

Currently, the consent options in most research studies do not include the return of results about “actionable” genetic variants. Recently, an international policy for returning genomic research results, and a practical checklist for return of results from genomic research in the European context, have been published. In line with these recommendations, Viking Genes offers all 10,000 cohort members the option of consent to return of selected clinically actionable results.

When conducting our research, we sometimes find genes with changes that aren’t normally found in healthy individuals. These changes may cause an increased risk of certain genetic diseases, including cancer or heart disease.

We’d like to let our volunteers know about gene changes they may have that are linked to a health condition. We’ll only send a letter if the condition can be prevented or improved by NHS treatment. These gene changes are uncommon - about one or two in every hundred people will have them. We’ll only let you know about these results if you agree for us to do so, and you can change your mind about this at any time.

Viking Genes verification sequence traces
Viking Genes verification sequence traces

We began to feedback results to participants in ORCADES and Viking Health Study - Shetland in spring 2023. Viking II and Viking III (Hebrides) will be in the next phase, starting in mid-2024. Potentially important research findings are discussed with the NHS Clinical Genetics Service in Aberdeen. If you have an ‘actionable’ result returned, the letter from Viking Genes will include contact details for the NHS clinical genetics team. If you get in touch with them, they’ll support, advise and answer any questions you may have. You’ll be asked to provide a sample to confirm the initial research result. An NHS genetics expert will then provide you with your clinically accredited results and they’ll discuss what it means for you.

Our Viking Genes analysis pipeline uses a list of 81 genes containing actionable variants that is compiled by the American College of Medical Genetics and Genomics, ACMG. Actionable variants in several of these genes increase the risk of heart diseases. Examples include KCNH2, predisposing to heart rhythm problems; TTN, increasing the risk of weakening of the heart muscle; and LDLR, causing inherited high cholesterol. We can also identify some hereditary bowel, breast and ovarian cancer predispositions. Examples of such genes include MSH6, BRCA1 and BRCA2. Data quality checks are done and each result is confirmed using a second method of DNA sequence analysis, at the University of Edinburgh.

New findings could continue to be made well into the future, as science gets better at predicting which gene changes cause health conditions. The ‘actionable’ gene changes will always be agreed with the NHS before we notify any Viking Genes volunteer. We will try to continue to return results for as long as possible.

You can find out further information on return of results in our information sheet:

Return of Genetic Results (329.3 KB PDF)

You may find the answer you're looking for in the Return of Results FAQ section:

Return of 'Actionable' Genetic Results FAQs

Alternatively, you can contact us. Details can be found in the link below:

Contact Us