Disclosing Your Genetic Test Results

Many people fear that taking a genetic test will lead to them being discriminated against if the results are positive, particularly with their health insurance. However, people living with IRDs and REDs also understand the benefits associated with a genetic test and that it is a prerequisite for participation in research studies which are necessary to drive innovation and accelerate the development of new treatments and potential cures for their conditions. Genetic tests also empower people as they can learn about how their particular condition is likely to progress and its pattern of inheritance. Individuals and families want access to genetic testing without fear of discrimination or increasing 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, but there are also other legal protections against genetic discrimination by employers, health insurers, and others.

The laws with respect to right to privacy on genetic test results differ in many countries and regions. Retina International strongly recommends that you examine the position in your own country so that you establish how the results of a genetic test could affect your ability to access a mortgage or the impact it might have on an insurance policy.

It is fair to say that although the legislation may vary the concerns at accessing insurance cover following a genetic test are universal. 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.

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 General Practitioner or hospital doctor may also be requested to better understand the risk. The insurance company will always ask for your permission to contact your General Practitioner 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 General Practitioner 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 Retina International member organisation.

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