What Can I Do If I Suspect Discrimination Due to a BRCA Gene Mutation?

Written By BRCAinBC

 Disclaimer: The information provided here is for general informational purposes only and does not constitute legal advice. No lawyer-client relationship is formed by reading or relying on this information. For legal advice specific to your situation, please consult a qualified lawyer. 

“While science has moved forward, many insurance companies are still catching up. Genetic testing, like BRCA screening, empowers individuals to make informed health decisions, but outdated insurance practices can unfairly penalize them.  Making sure you understand your rights can mean the difference between obtaining coverage or receiving a denial from your insurer.” -David A. Goldberg, Barrister & Solicitor, Taylor & Blair, LLP

Article Summary 

If a person in Canada believes they’ve experienced discrimination from an insurer based on their BRCA status, they have several options to choose from: 

  1. First, review the insurance policy to confirm if genetic information was used improperly, as the Genetic Non-Discrimination Act prohibits insurers from requesting such data.  

  2. If discrimination is suspected, contact the insurer directly for clarification.  

  3. If the issue remains unresolved, file a complaint with the insurer's ombudsman or the relevant provincial insurance regulator.  

  4. If the insurer is federally regulated, file a complaint with the Canadian Human Rights Commission or if provincially regulated, file with the respective provincial human rights commission.

     

  5. Seek legal advice from a lawyer specializing in insurance or human rights law. In extreme cases, legal action can be taken, or public advocacy can raise awareness. 

It’s important to remember that the steps outlined below should be treated as an ‘escalating menu of options.’ It is unlikely that you will need to proceed through the whole menu. However, by exercising one or two of these options, you can often improve the outcome of a situation you are in. Many insurance companies and other organizations bank on people not knowing their rights or what to do in cases of discrimination. Or they hope you will be too intimidated to engage in a confrontation.

A little effort can often go a long way. 

Introduction 

“What am I supposed to say if they ask about my previous surgeries?” 

“What should I not say?” 

“Does that sound like discrimination?” 
 

These are some questions that came up when discussing insurance with my mom, a BRCA2 carrier who has known about her status for 20 years.   

Even as third and fourth generation carriers, we still don’t know how to navigate discussions around insurance. At times, the process of dealing with insurance can feel more painful than a breast MRI. For carriers, insurance is just one of the many stressful challenges we face, but it’s rarely talked about.

If you live in Canada, you may have heard about the introduction of the Genetic Non-Discrimination Act in 2017, but did you know that we are directly impacted by this legislation? The Act makes it illegal for anyone to require carriers to disclose their genetic testing results in exchange for goods or services. The purpose of the Act is to make it harder for insurance companies to discriminate against carriers using genetic testing. However, like with many other illegal activities, discrimination still happens. Insurance companies are still allowed to ask probing questions that can be difficult for carriers to navigate. While they cannot directly ask about your genetic status, they can often infer a “high-risk” condition from medical context clues, leading to consequences that may feel just as significant. 

Discrimination can take the form of being denied insurance because of your health history or being charged higher premiums than non-carriers. When this happens, what can we do as carriers? The answer may not be straightforward. You also don’t need to do anything if you don’t want to. However, if someone in Canada believes they have experienced discrimination from an insurer based on their BRCA status, there are several steps that they can take to address the situation.  

 

7 Steps to Take If You Suspect Insurance Discrimination

1. Review Your Insurance Policy 

Check the terms of the insurance policy: Determine if the insurer has used genetic information to adjust premiums, deny coverage, or otherwise treat the individual unfairly. Insurance companies are not allowed to request genetic test results as part of the application for life, critical illness, or disability insurance, per the Genetic Non-Discrimination Act (GNDA). 

If you suspect that the insurer has discriminated based on genetic information, that action may constitute a breach of the Genetic Non-Discrimination Act (GNDA) or other anti-discrimination protections. 

“But what if the insurer used loopholes to adjust my premium, deny my coverage, or treat me unfairly?” 

A: It depends. Just as not everyone who drives a car obeys the posted speed limit, not all insurance policies are necessarily compliant with the law. If a policy is illegal, any resulting discrimination would also be illegal-provided it can be proven (regardless of what the policy says). However, not all forms of what we might consider discrimination are unlawful. 

NOTE:  

1. The Genetic Non-Discrimination Act (GNDA) prohibits insurers from requiring genetic test results, but they may still use family history as a risk factor in their calculations.  

2. Human Rights Laws (federal and provincial) may prohibit discrimination based on disability, which may apply to discrimination based on BRCA+ status. 

3. Privacy Laws (PIPEDA & Provincial Laws) may prevent misuse of personal genetic information. 

2. Contact the Insurance Company 

Contact the insurer directly: If discrimination is suspected, the first step is often to discuss the issue directly with the insurer. Request clarification on the reasons for their decision, such as denial of coverage or higher premiums. 

Request a written explanation: If you believe the decision you find discriminatory is based on your BRCA status or genetic information, ask the insurer for a written explanation of how your genetic status was used in making the decision. 

3. File a Complaint with an Insurance Ombudsman 

Ombudsman: Many insurers have an ombudsman or an internal complaints process. This can be the next step if you're not satisfied with the response from the insurer. The ombudsman can review your case independently. 

Provincial Insurance Regulator: Each province has a body that regulates insurance practices, such as: 

British Columbia 

Alberta 

  • Insurance Regulator: Alberta Superintendent of Insurance 

Saskatchewan 

  • Insurance Regulator: Financial and Consumer Affairs Authority (FCAA) 

Manitoba 

  • Insurance Regulator: Insurance Council of Manitoba (ICM) 

Ontario 

  • Insurance Regulator: Financial Services Regulatory Authority of Ontario (FSRA) 

Quebec 

  • Insurance Regulator: Autorité des marchés financiers (AMF) 

New Brunswick 

  • Insurance Regulator: Financial and Consumer Services Commission (FCNB) 

Nova Scotia 

  • Insurance Regulator: Nova Scotia Utility and Review Board (NSUARB) 

Prince Edward Island 

  • Insurance Regulator: Office of the Superintendent of Insurance 

Newfoundland & Labrador 

  • Insurance Regulator: Department of Finance – Insurance Division 

You can file a formal complaint with the provincial regulator detailing the discriminatory actions taken by the insurer. The regulator can then investigate whether the insurer has acted improperly or against the law. 

4. File a Human Rights Complaint 

Canadian Human Rights Commission (CHRC): If the discrimination involves federal jurisdiction (e.g., if it's a federally regulated insurance company), you can file a complaint with the Canadian Human Rights Commission (CHRC) under the Canadian Human Rights Act. Genetic discrimination could fall under the category of discrimination based on disability. 

Provincial Human Rights Commissions: If the insurer is provincially regulated, you may file a complaint with the provincial human rights commission: 

These commissions can investigate whether the insurer has discriminated based on disability or genetic information. 

5. Consult a Lawyer 

Seeking legal advice: If the issue is complex or remains unresolved, consulting a lawyer specializing in insurance law, human rights law, or disability rights can be helpful.  

A lawyer can also help with any legal action or represent you in filing a complaint with the relevant regulatory bodies or courts. 

Legal Assistance Options

Low-Cost Legal Assistance

*may have income eligibility requirements 

  • Access Pro Bono 

BC: https://www.accessprobono.ca/get-legal-help 

AB, SK, ON, QC: https://www.accessprobono.ca/get-legal-help/pro-bono-other-provinces 

  • Human Rights Clinics 

BC: https://clasbc.net/get-legal-help/human-rights-complaints/?utm_source=chatgpt.com 

AB: https://www.albertahumanrights.ab.ca  

SK: https://saskatchewanhumanrights.ca  

MB: https://www.manitobahumanrights.ca  

ON: https://hrlsc.on.ca 

NB: https://www2.gnb.ca/content/gnb/en/departments/nbhrc.html 

NS: https://humanrights.novascotia.ca 

PEI: https://www.peihumanrights.ca 

NL: https://thinkhumanrights.ca 

YT: https://www.yukonhumanrights.ca 

NT: https://nwthumanrights.ca 

NU: https://nwthumanrights.ca 

  • Law School Clinics  

BC: University of British Columbia: https://www.lslap.bc.ca/ 

ON: 

QC:  Université du Québec à Montréal: https://droit.umontreal.ca/en/programs-clinic-and-intership/legal-clinic/ 

General Referral Services  

 

6. Pursue Legal Action (if necessary) 

If all other steps fail and the discrimination is severe or ongoing, you may consider filing a lawsuit against the insurer. This could be based on a breach of the Genetic Non-Discrimination Act, disability discrimination laws, or contract law. 

Legal action could involve seeking damages for financial losses, emotional distress, or other harm caused by the insurer’s discriminatory practices. 

7. Engage in Public Awareness or Advocacy 

If you're comfortable doing so, you can raise awareness of the situation through public campaigns, media, or advocacy organizations focused on genetic discrimination. This can draw attention to the issue and potentially help others in similar situations. 

 

Conclusion

You Deserve Equal Treatment—And You’re Not Alone

Discrimination based on BRCA status is not just unfair—it may be illegal. Knowing your rights is the first step toward protecting yourself and others in the BRCA community.

If you're facing obstacles with insurance, don't be discouraged. Most cases are resolved before needing legal action, especially when you're informed and assertive.

BRCAinBC
Next

Current and Future Directions for Research in BRCA