Direct to consumer genetic testing

What is direct to consumer genetic testing?

Genetic testing in the UK is available from specialist healthcare providers and clinical genetics services. The appropriate genetic test is performed in direct response to the person’s medical need and the results are provided by a healthcare professional with advice, support and onward referral as required.

Direct-to-consumer genetic testing is different: these genetic tests are marketed directly to customers via television, print advertisements, or the internet, and the tests can be bought online or in shops. Customers send the company a DNA sample and receive their results directly from a secure website or in a written report.

The most popular tests use genetic variations to make predictions about health, provide information about common traits, and offer clues about a person’s ancestry.

Direct to consumer genetic testing companies include: 23andMe, Ancestry and My Heritage. Similar services may be available from other providers.

What are the benefits of direct to consumer genetic testing?

• Increases awareness of genetic diseases.
• Provides personalised information about your health, disease risk, and other traits.
• It may help you be more proactive about your health.
• DNA sample collection is usually simple and non-invasive (usually a mouth swab/saliva sample), and results are available quickly.
• Your data is added to a large database that can be used to further medical research.

What are the risks/limitations of direct to consumer testing?

• Tests may not be available for the health conditions or traits that interest you.
• Tests cannot definitively predict whether you will or will not get a particular disease.
• Unexpected information that you receive about your health, family relationships, or ancestry may be stressful or upsetting.
• Test results may be complicated to understand and there is a risk of making important decisions about disease treatment or prevention based on inaccurate, incomplete, or misunderstood information.
• There may not be enough scientific evidence to link a particular genetic variation with a given disease or trait.
• Genetic privacy may be compromised if testing companies use your genetic information in an unauthorised way or if your data is stolen.
• The results of genetic testing may impact your ability to obtain life insurance.

What should I consider before using a direct to consumer genetic test?

• What exactly do you want to know?
• Is the company you are using reputable?
• Are you prepared to make any changes to your lifestyle to reduce any risks identified?
• What will you do with the information once you have received it?

What should I do if the test identifies something of concern?

Direct to consumer genetic testing provides only partial information about your health. Other genetic and environmental factors, lifestyle choices, and family medical history also affect the likelihood of developing many disorders. Direct to consumer genetic testing only identifies the presence of some common genetic changes and cannot tell how many copies of this genetic change are present. This means that direct-to consumer testing is not recommended for diagnostic purposes.

Where can I get more advice about this?

There are useful online resources that can help you to decide whether to proceed with this test:

• NHS genetic-and-genomic-testing (opens in a new tab)
• Direct-to-consumer genetic testing (opens in a new tab)

Direct-to-consumer genetic tests are not designed to diagnose a medical condition and should not be used as a substitute for visiting your doctor if you are at all concerned about your current health or the risk that you may develop a condition in the future.