|Note: This article is applicable to residents of the United Kingdom.
23andMe is a long-time supporter of efforts to prevent genetic discrimination and to safeguard individuals' genetic privacy. 23andMe will not provide any person’s data (genetic or non-genetic) to an insurance company without their explicit consent.
For our UK customers, below is a description of the legal protections against genetic discrimination, as well as their limitations.
What is the Code on Genetic Testing and Insurance?
The Code on Genetic Testing and Insurance is a voluntary agreement (the “Code”) between the UK Government and the Association of British Insurers (“ABI”) that prevents insurance companies from accessing or using genetic test results in making insurance coverage and rate decisions. Predictive genetic tests ordered directly by consumers from commercial providers, such as 23andMe, are covered by this agreement.
Under the agreement, individuals will not be required to reveal the results of any predictive genetic test unless the test is deemed approved and relevant under the Code. Currently, the Code only approves sharing of a predictive genetic test for Huntington’s disease with life insurers in applications for life insurance coverage worth in excess of £500,000. 23andMe does not provide a report on Huntington’s disease.
The Code is the sixth iteration of a long-standing agreement which was previously called the “Concordat and Moratorium on Genetics and Insurance” (the “Concordat & Moratorium”). The previous Concordat & Moratorium had to be renewed every three years, whereas the Code is open-ended without an expiration date.
- Full text of the The Concordat and Moratorium on Genetics and Insurance can be found here
- Consumer guide for people considering taking a genetic test and wondering how it could affect their insurance can be found at Genetic Tests and Insurance: What you need to know
- To learn more about the information you must disclose to insurance companies, what you do not need to disclose, and what your GP can give to an insurance company with your permission, check out the Genetic Alliance UK’s Insurance and genetic conditions guide