Insurers use risk data to calculate the likelihood of the event you are insuring against happening. This information is used to work out the cost of your premium. The more likely the event you are insuring against is to occur, the higher the risk to the insurer and, as a result, the higher the cost of your premium.

An insurer will take two important factors into account when working out the premium they will charge:

1. How likely is it in general terms that someone will need to make a claim?
2. Is the person who wants to take out a policy a bigger or smaller risk than the ‘average’ policyholder. Your medical history can help to inform this.

To find out more about how insurance works in the UK, you can read the ABI’s guide here.

There are specialised insurance brokers who can help to identify different insurance companies or products for those with complex and pre-existing health conditions, and details of these are provided by some patient groups.

The majority of life, critical illness and income protection insurance is based upon the information obtained on the application form, without any referral to GPs. In some cases, insurance companies may seek your consent to obtain a medical report from your GP as part of your application. In these circumstances, the insurer needs certain information from your GP to assess your application properly so that they make an informed decision regarding accepting or declining the application and charging the correct premium.

In applications for life insurance, the insurer is only interested in the diagnosis, treatment, severity and prognosis of a condition that could reduce your life expectancy. For critical illness insurance, the insurer is generally only interested in information about any of the conditions covered, and other health factors that affect the likelihood of you developing the conditions covered. For income protection insurance, the insurer is concerned with medical conditions that cause long-term absence from work.

Your GP will be told not to include any predictive genetic test results in their report to the insurer. If it is included, it will be ignored by the insurer.

Your insurer will not ask your GP about your participation in research projects.

Your insurer may ask your GP about the medical history of your first degree relatives. However, this information will only include what you have disclosed to your GP as part of your own medical records, and will only be in relation to a specific set of conditions.

When applying for insurance, should an insurer require further information, the applicant will typically be asked to complete a form that provides their consent for the insurer to obtain relevant medical information from their GP. This is performed in accordance with the Access to Medical Reports Act 1988 (AMRA), which determines how insurers, and other third parties, should request medical information from GPs and must include the explicit consent of the applicant.

AMRA is applicable to Wales, Scotland and England. In Northern Ireland, a request is made under the Access to Personal Files and Medical Reports (Northern Ireland) Order 1991. These two acts give insurers the correct legal route to obtain medical information. More information can be found here.

Yes, you have a right to request to view your medical report before it is sent to the insurance company. Under the Access to Medical Reports Act 1988, you also have a right to:

• amend the report if it is factually incorrect or contains information that is not relevant to your application (including the results of predictive genetic tests);
• tell the GP not to send the report to the insurer (which may affect your application); and,
• view the report up to 6 months after it has been sent to the insurer.

There are a number of different types of health record, accessing them is free, and healthcare professionals have a legal requirement to allow you to see them. To find out how you can access your records, visit the NHS choices website.

No. However, you must answer all questions on the application form honestly and accurately. Regarding the health details of relatives, you only need to disclose what has been requested and that you know about. If you are unsure about your family history of a specific condition, you do not need to seek out this information.

No. Access to confidential patient information, including genetic data or genetic test results, will not be shared with an insurance company without your consent. You can read more information about how the NHS protects your information here.

A genetic test is a type of medical test that looks for possible changes in your DNA. If you are unwell, you may have a genetic test to help find out what is wrong. This is called a diagnostic genetic test. Some changes in your DNA can affect your risk of getting an illness in the future. You can have a predictive genetictest to find out about certain types of future risk, before you become unwell.

No. Insurers will not require or pressure any applicant to undertake a predictive or diagnostic genetic test in order to obtain insurance.

Yes. If you have a predictive genetic test that is in your favour, you can choose to tell the insurance company as this might help your application. An example is if you have had a test which shows that you haven’t inherited a condition that runs in your family. Individual insurance companies are required to publish information and make it very clear about the way they will use such test results to inform their underwriting decisions. The vast majority of insurers will take into account the results of a voluntarily disclosed genetic test result, provided it is from a reputable source. This often allows them to make a more accurate decision with a better outcome for the applicant.

When filling in an application form, it should usually be clear where you can tell an insurer about a genetic test that shows you have not inherited a risk identified in your family – this may just be a section for extra notes. If it is not clear, insurers will offer the ability ring and speak to an underwriter on the phone, so you can tell them about this information. 

If you are applying for life insurance over £500,000, you may need to disclose to an insurer if you have a predictive genetic test result for Huntington’s disease. If you intentionally do not disclose the test result, you may invalidate your insurance. However, you do not need to disclose the test result if you are applying for less than £500,000 of life insurance and if you do disclose it the insurer will ignore the result.

Just because you may have to disclose a test result for Huntington’s disease does not mean you will necessarily be refused insurance.

Anti-selection is a risk that insurance companies face. Anti-selection occurs when someone who is buying insurance has access to more information than the insurer and, as a result, the insurer underestimates the risk of insuring that person. The Code on Genetic Testing and Insurance ensures that the insurance industry has protection against levels of anti-selection, which can threaten the insurers business models and make insurance more expensive for all consumers by allowing some limited access to predictive genetic test results for the most expensive policies.

Unless you are buying a type of protection insurance (life, critical illness or income protection), the results of a predictive genetic test are not relevant to your application and so you do not need to disclose any predictive genetic test. This includes travel, motor insurance or health insurance.

There are specialised insurance brokers who can help to identify different insurance companies or products for those with complex health conditions. Details of these are provided by some patient groups.

Yes, if this information is requested on the application form. The application form will typically ask you for information relating to any physical symptoms you have experienced or diagnoses you have received. These questions must be answered honestly and accurately, even if these relate to a condition that is discovered through a research study.

No. You will not need to disclose any predictive genetic test results that have been acquired as part of a research study, and an insurer will not ask you to disclose these results.  

Even if you do (unintentionally) disclose this information to an insurer, the test result would be ignored by insurance companies and your application would be assessed as if this had not been disclosed. The insurer will not use it to refuse you insurance, charge you a higher premium, or impose conditions on your insurance.

No. You only need to answer the questions in the application form. If the form asks you if you have suffered from a specific medical condition, then you need to disclose this regardless of whether there is any genetic component or not. However, you do not need to disclose the genetic test result even though this may be associated with your diagnosis.

For example, if you had previously been diagnosed with breast cancer, and through a research study you discover you have a mutation in the BRCA1/2 genes, you do not need to mention the genetic test result when disclosing your previous diagnosis.

Even if you do (unintentionally) disclose this information to an insurer, the genetic test result would be disregarded by insurance companies and your application would be assessed as if this had not been disclosed. The insurer will not use it to refuse you insurance, charge you a higher premium, or impose conditions on your insurance.

Yes, if this information is requested on the application form. The application form will typically ask you for information relating to any screening or preventative treatments (including risk reduction surgery) you have received. These questions must be answered honestly and accurately, even if these relate to a condition or predisposition that is discovered through a research project.

It is unlikely that disclosures about additional screening or preventative treatments alone will result in increased premiums or refusal of cover. However, it may alert the insurer to closely examine your personal medical and family history in order to be able to fully assess your application. Some insurers may also ask additional questions beyond those on the application form to gain as much detail as possible.

Any additional screening or preventative treatment that you undergo which is known to reduce the risk of a particular condition will be taken into account by the insurer in assessing your application and setting your premiums, which could result in a better outcome for you.
The insurer is obliged to justify any increased premiums or refusal of cover by demonstrating that there is an increased risk of you making a claim based on the facts collected at application.

Insurance companies must provide you, if asked, with written reasons for:

• any extra premiums they charge;
• reducing the insurance cover that is provided;
• refusing an insurance application;
• rejecting a claim; or
• cancelling a policy.

If you have been diagnosed with a genetic condition or you have a family history of a particular condition, all of these factors may already affect any insurance applications you make. In this context, any additional screening or testing you receive because of a genetic finding may not have any (further) negative impact and could even be used by insurers to reduce any surcharge you would otherwise pay.

No, your family members will not be asked or required to disclose this information on any applications for insurance. Insurers will usually ask about the medical history of your first degree family members (your parents and siblings). However, this will usually be limited to whether any of these family members have had a particular condition or diagnosis. In no case will an insurance company ask an applicant to disclose the predictive genetic test results of a family member.

Yes, but only in the limited circumstances as set out in the Code (applying for life insurance over £500,000). If, as a result of genetic testing through scientific research, a relative who is not part of the research project is referred for genetic testing (called cascade testing), that relative’s genetic test result would not fall under the exemption of scientific research and they may need to disclose the result, if they apply for insurance. However, if your relative was referred for predictive genetic testing as part of a research study, they will not be asked by insurers to disclose any predictive genetic test result acquired.