Genetic Denials: Life Insurance's Dark Secret

The use of genetic test results by life insurance companies in underwriting is a long-standing issue of international concern. In the US, the Genetic Information Nondiscrimination Act (GINA) of 2008 prohibits health insurance companies from using genetic information to make coverage or rate decisions. However, GINA protections do not extend to life insurance, and there is no federal law limiting the use of genetic information by life insurers. This means that life insurance companies can use genetic test results to deny coverage or charge higher premiums. This has led to concerns about genetic discrimination, with some people avoiding genetic testing or struggling to access life insurance due to their genetic risk factors. While the impact of genetic test results on life insurance coverage varies depending on the country and company, it is a significant consideration for individuals seeking insurance and can deter them from pursuing potentially life-saving health information.

Genetic testing and life insurance in Australia

In Australia, life insurance is an umbrella term for death cover, total and permanent disability, income protection, and trauma insurance. In the past, it was a common condition for life insurance applicants to disclose the results of any genetic tests they had undertaken. This led to concerns that individuals may avoid genetic testing and miss out on crucial diagnoses and treatments for serious illnesses, such as cancer, due to the fear of being denied insurance coverage.

Recognizing these concerns, the Financial Services Council, which represents all life insurers in Australia, implemented a ban on requiring genetic test results for insurance applications in July 2019. This ban, which was set to last until June 30, 2024, with a review in 2022, prohibited life insurers from mandating applicants to disclose their genetic test results up to certain monetary limits of cover. The review was deemed necessary due to the rapid advancements in the field of genomics.

The Australian ban included specific monetary limits for different types of coverage. For instance, there was a limit of $500,000 for death cover, $500,000 for total permanent disability cover, $200,000 for trauma or critical illness cover, and $4,000 per month for any combination of income protection, salary continuance, or business expenses cover. It's important to note that the ban didn't prevent individuals from voluntarily disclosing favourable genetic test results to life insurers.

It's worth noting that protections for individuals with existing life insurance policies were already in place before the ban. These policies were "guaranteed renewable," meaning that once the coverage was obtained and premiums were paid, there was no requirement to disclose the results of any subsequent genetic testing. Additionally, most life insurance in Australia is accessed through superannuation funds provided by workplaces, offering "group" cover with automatic acceptance and no medical or health checks required, at least up to a certain default limit of cover.

While the ban addressed concerns about genetic discrimination in life insurance, it's important to note that it had limitations. For amounts above the specified monetary limits, insurers could still request and consider genetic test results in their decision-making process. This distinction is essential as it may still influence individuals' decisions about undergoing genetic testing and their access to insurance coverage.

Genetic testing and life insurance in the US

In the US, the Genetic Information Nondiscrimination Act (GINA), passed in 2008, prohibits health insurance providers from using genetic information to determine a person's health insurance eligibility or coverage. This means that health insurance companies cannot use the results of a direct-to-consumer genetic test to deny coverage or charge higher premiums.

However, GINA does not apply to other forms of insurance, including life insurance, long-term care insurance, and disability insurance. This means that insurance companies offering these policies have the right to request medical information, including the results of any genetic testing, when making decisions about coverage and rates. This has led to concerns about genetic discrimination, with reports of insurers denying coverage or increasing prices based on genetic test results.

Some US states have introduced laws to address these concerns, with Florida becoming the first state in 2020 to prohibit life, long-term care, and disability insurers from using genetic test results to set premiums or deny coverage. However, most states follow federal law, which does not provide protection from genetic discrimination in these areas.

The impact of genetic testing on insurance underwriting is a complex issue, and there are ongoing debates about whether insurers should have access to genetic test results. While insurers argue that they need this information to properly assess risk, opponents worry about unfair discrimination based on genetic makeup. The low awareness and understanding of GINA among the US population add to these concerns, with many people unsure about the extent of legal protections.

While GINA provides some protection against genetic discrimination in health insurance, gaps in the law leave individuals vulnerable to genetic discrimination in other types of insurance, including life insurance. This has led to concerns about the potential impact on individuals' access to insurance and their willingness to undergo genetic testing. As genetic testing becomes more common, addressing these concerns through legal and policy changes will be crucial to ensuring fair access to insurance and encouraging the use of potentially lifesaving health information.

Genetic testing and life insurance in the UK

In the UK, the Code on Genetic Testing and Insurance is a voluntary agreement between the government and the Association of British Insurers (ABI). The code was published in October 2018 and is reviewed every three years. It commits insurance companies to:

• Treat applicants fairly and not require or pressure any applicant to undertake a predictive or diagnostic genetic test
• Not ask for or take into account the result of a predictive genetic test, except when the life insurance is over £500,000 and the applicant has had a predictive genetic test for Huntington's Disease
• Not ask for or take into account the result of any predictive genetic test obtained through scientific research

The code also states that insurance companies cannot require or pressure any applicant to undertake a predictive or diagnostic genetic test to obtain insurance. This means that insurance companies cannot deny coverage or charge higher premiums based on genetic test results. However, there are some exceptions. For example, for life insurance cover over £500,000, insurers can request the disclosure of results of a predictive genetic test for Huntington's Disease.

In the UK, the use of genetic test results in insurance underwriting is regulated by the Code on Genetic Testing and Insurance. The code sets out the commitments of insurance companies regarding the use of genetic test results in underwriting policies. The code aims to provide reassurance to consumers about how genetic testing could affect their access to life, critical illness, and income protection insurance products. It also ensures that insurers have the minimum information needed to accurately price insurance premiums for all consumers.

The code is open-ended and has no expiry date. However, the government and the ABI agreed to publish triennial reviews to keep it up-to-date. The first triennial review was conducted in 2022 and identified some key areas for development, including improving the accessibility of the code for consumers and defining different types of genetic tests covered by the code.

In conclusion, while the Code on Genetic Testing and Insurance provides some protections for consumers in the UK, there are still some exceptions where genetic test results can be used by insurers. It is important for consumers to understand their rights and how their genetic information may be used by insurance companies.

Genetic testing and life insurance in Canada

Genetic testing is a medical technology that can determine what illnesses one may face in the future. This information is highly sought after by life insurers worldwide, as it aids in their assessment of risk. Access to this information is controversial, and laws vary from country to country. In Canada, the use of genetic test results by insurance companies is regulated by the Genetic Non-Discrimination Act (GNDA).

The Importance of Genetic Tests to Insurers

Life insurance providers base premiums, in part, on the daily risks that the insured faces. Thus, understanding whether an applicant may or may not develop a life-threatening disease is of great interest to insurers. This information could lead them to increase premiums or deny coverage to those more likely to develop certain illnesses. On the other hand, it could reduce the premiums of someone whose genetic test rules out particular diseases.

Canadian Laws Related to Using Genetic Information

Canada passed Bill S201, the Genetic Non-Discrimination Act (GNDA), in 2017. This law prevents employers, insurance companies, and anyone else providing goods or services from asking individuals to undergo genetic testing or disclose prior results. Insurers who violate this law can face a fine of up to $1 million or five years in prison.

The law still allows insurers and other parties to collect genetic test results with consent. The Privacy Commission of Canada stipulates that consent must be clear, in writing, fully informed, and freely given. Additionally, if the genetic test results become part of an individual's medical record, insurance companies will have access to them.

Pros and Cons of Genetic Testing Laws

The GNDA has several advantages and disadvantages. On the positive side, Canadians may feel more comfortable undergoing genetic testing to understand their potential illnesses, as they are not required to disclose the results. Without this protection, some individuals might resist testing out of fear that their insurance premiums could increase or that they could become ineligible for a policy. Such fear may prevent Canadians from taking a genetic test that could save their lives.

One of the main drawbacks of the GNDA is the potential impact on insurance premiums. The Canadian Institute of Actuaries claims that premiums might rise by 50% for women and 30% for men due to this law. Life insurers argue that individuals who test positive have an incentive to purchase life insurance, which could lead to higher premiums overall.

Should You Get Genetic Testing?

The decision to undergo genetic testing is ultimately a personal one. It is recommended to speak to a medical professional about how testing could impact your health. A specialist can provide information about what to expect from the process and the benefits and drawbacks in your specific situation.

While Canadian law prohibits insurance providers from using genetic testing results to influence underwriting or premiums, any medical procedures undertaken based on genetic testing information must be revealed to potential insurance providers. They are entitled to know about any surgeries or prescription medications resulting from genetic testing.

The impact of genetic testing on life insurance pricing and affordability

In the United States, the Genetic Information Nondiscrimination Act (GINA) was passed in 2008 to protect individuals from genetic discrimination in health insurance. GINA makes it illegal for health insurance providers to use genetic information when deciding a person's eligibility or coverage. This means that health insurance companies cannot use genetic test results to deny coverage or charge higher premiums.

However, GINA does not apply to other forms of insurance, including life insurance. This means that life insurance companies can request and use genetic test results when evaluating applications and setting prices. This can affect an individual's ability to obtain life insurance or influence the price they pay for it.

Some argue that life insurance companies should be prohibited from accessing and using genetic test results, as this would encourage more people to undergo genetic testing and potentially improve their health and life expectancy. Additionally, genetic test results may not significantly impact the calculation of mortality risk, as non-genetic information such as age, health status, and family history is already considered in the underwriting process.

On the other hand, life insurance companies argue that evaluating health and genetic information is necessary for accurate underwriting and to ensure fairness for current and future policyholders. They contend that knowing an individual's genetic risks helps them assess their life expectancy and set appropriate premiums and coverage.

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