Health Insurance FAQs and Genetic Discrimination

Despite the many benefits of taking a genetic test, many fear that a positive result will lead to genetic discrimination, particularly with regard to health insurance. It is important that individuals and families have access to genetic testing without fear of discrimination or increasing insurance premiums.

Genetic Information Non-Discrimination Legisation

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.


FAQs regarding health insurance and genetic testing

It is fair to say that although the legislation may vary the concerns at accessing insurance cover following a genetic test are universal, and below are some general FAQs from organisations that advocate for those who live with genetic conditions. Genetic discrimination is illegal in many countries; however, we implore you to contact your local national organisation for further information as necessary.


What if the insurance company has not heard of my condition?

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.


What if I am an unaffected carrier of a genetic condition?

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.


Should I tell my insurance company if I am receiving treatment for a condition?

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.


Should I tell the insurance company when I start to receive treatment?

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.


Why do insurance companies request information from your doctor or specialist?

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.


What questions will the insurance company ask my General Practitioner or Specialist?

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 include topics such as:

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.


Can I ask my medical geneticist to explain my IRD, or does the insurance company only ask my doctor or specialist?

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.


What are my rights when an insurer is requesting information from my Doctor or specialist?

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.


Can insurance companies interpret my genetic tests results?

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.


What if I have been refused insurance?

If you have been refused insurance, then you should contact your local Retina International member organisation.


Other links relevant to genetic discrimination and Insurance:

National Institute of Health: What is genetic discrimination? 

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