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The Concordat and Moratorium on genetics and insurance has been updated to reflect the agreement’s extension until 2019. Annex 2 has been added to clarify different types of genetic test.
Under the agreement the results of whole-genome sequencing carried out in major research projects, like the 100,000 Genomes Project run by Genomics England, do not need to be disclosed to insurers because they are part of a research project.
As before, the only test that people are currently required to disclose under the agreement is for Huntington’s disease for life insurance where the insured sum is over £500,000.
The next full review of the Concordat and Moratorium will take place in 2016.
The Department of Health, in discussion with the Association of British Insurers (ABI) believe the agreement continues to work well and guarantees that anyone who has had a predictive test to assess their susceptibility to genetic conditions, such as breast and ovarian cancer, can take out significant insurance cover without disclosing the results.