Disclosing your genetic test result

Many people fear that taking a genetic test will lead to being discriminated against if the results are positive. Retina International has learnt through a survey of its members that this does not dissuade patients who live with IRDs and REDs from taking a test. However, many who do not have a history of these conditions in their families and have been newly diagnosed do have concerns. In this section we outline some of the frequently asked questions people have concerning discrimination, particularly on matters of insurance.

Patients living with IRDs and REDs do understand that undertaking a genetic tests is a prerequisite for participation in research studies and that these are necessary to drive innovation, expedite the development of new treatments and potential cures for their conditions.

It must also be understood that patients seek genetic testing to better understand thier conditions. To learn about how their particular condition is likely to progress and the inheritance patterns. This empowers families and individuals to make informed choices and so they want to access these tests without fear of discrimination or loading of insurance premiums. 

Many countries have published legislation to address this issue. One of the best known pieces of legislation is the Genetic Information Non-discrimination Act (GINA) in the United States which was passed into law in 2008. GINA prohibits discrimination by employers and health insurers against those with a positive genetic test result there are also other legal protections against genetic discrimination by employers, health insurers, and others.

Each country has its own legislation and we have supplied links in this section for you to review. 

It is fair to say that although the legislation may vary the concerns at accessing insurance cover following a genetic test are universal. In the European Union for example it is illegal to use this information to weight a policy however the question is asked in insurance forms. In many cases genetic discrimination is illegal but the situation varies from country to country and so Retina International advises that you contact your national organisation for further information but here is some general information from organisations that advocate for those who live with genetic conditions.

You will normally be asked how your health is at this time, if you have had health problems in the past and if there are any other health problems in your family.

Insurance companies need to understand your condition so they can assess your application. If your condition is not common, the insurance underwriter may want to find out more information from you or your doctors. An insurance company may also consult with their Chief Medical Officer or other qualified experts. Information from your GP or hospital doctor may also be requested to better understand the risk. The insurance company will always ask for your permission to contact your GP or hospital doctor.

Being a carrier of a genetic condition but showing no symptoms does not need to be disclosed to the insurance company. However you must disclose all relevant medical history

Explaining current treatment is essential as it shows that the condition is treatable; The insurance company may ask for a letter from your GP or a hospital doctor for further information of the treatment and its effectiveness.

Unless your insurance company specifically requests that you advise them about treatment, after you have taken insurance cover, you do not have to tell the insurance company about any treatment you are taking.

However, if you later start a new policy, you will have to disclose the treatment you have had to the insurance company. It may be that receiving treatment affects the price of the premium in a positive way; remember if treatment is effective, insurance companies may take this into account when calculating your premium.

Insurance companies may request medical information from your GP or hospital doctor to better understand your condition in order to accurately price the additional risk from any health problems you disclose.

With your fully informed consent, insurance companies will usually send your GP or hospital doctor a ‘General Practitioners Report’ (GPR) which they will be required to complete.

General questions typically involve:

  • Current health – are you receiving any medical care, medication, treatments.
  • Sickness record – have you taken days off work due to ill health.
  • Predictive genetic test results – must be disclosed only in the case of Huntington’s disease cases for life insurance policies over €500,000.

There is nothing to stop you from sending information to the insurance company from your medical geneticist. This may be helpful if you have a rare disease or condition which you feel the insurance company may not be familiar with.

If a GP or hospital doctor report is requested, you will be asked for your fully informed consent, and there may be a question asking if you want to see a copy of the report before the GP sends it to the insurance company.

The insurance company will tell the GP or hospital doctor if you do want to see a copy of the report first.
You are entitled to talk with your GP or hospital doctor before medical reports are sent to the insurance company you are entitled to know what information your GP or hospital doctor has provided to the insurance company 

Yes. The interpretation will be carried out by a nominated senior insurance company staff member. They will refer to qualified medical experts for guidance whenever it is needed.

If you have been refused insurance then you should contact your local member organisation.
Here is a link to member organisations that may be able to help you:

Here is a link to published legislation on insurance and genetic information:


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