Paul Sanchez
Genetic testing can have a significant impact on an individual's ability to obtain insurance, particularly long-term care, life insurance, or disability insurance. While federal laws, such as the Genetic Information Nondiscrimination Act (GINA), prohibit health insurance providers from using genetic information to determine eligibility or premiums, this does not extend to other forms of insurance. Insurers may request and utilize genetic test results to evaluate applications for long-term care, life insurance, or disability policies, potentially affecting an individual's ability to obtain coverage or resulting in higher premiums. This has raised concerns about genetic discrimination and the potential hindrance to the uptake of genetic testing, with ongoing debates about the ethical use of genetic information in the insurance industry.
| Characteristics | Values |
|---|---|
| Impact on insurance | Genetic testing may impact an individual's ability to get long-term care insurance, life insurance, or disability insurance. |
| Federal laws and regulations | In the US, the Genetic Information Nondiscrimination Act (GINA) prohibits health insurance providers from using genetic information for eligibility or coverage decisions. However, GINA does not apply to small employers (15 employees) and certain insurance types. |
| State laws and regulations | Some US states have laws governing the use of genetic information by insurers for long-term care, disability, and life insurance. |
| Industry codes and practices | The Association of British Insurers adopted a voluntary moratorium on using genetic test information until at least 2019. The Canadian Health and Life Insurance Association implemented a similar code in 2018. |
| Impact on consumers | Genetic testing may affect insurance premiums and coverage, especially for individuals with a family history of genetic disorders. Consumers may be reluctant to undergo testing due to potential economic consequences and discrimination fears. |
| Impact on insurers | Genetic testing and advancements in genomic technologies may expose insurers to unexpected risks and impact their products, markets, and operations. |
| Data and reporting | Insurers are required to report data on genetic test results disclosed by applicants and complaints about breaches. Annual reports provide insights into the insurance market and genomic technology developments. |
| Compliance and monitoring | Compliance with codes and regulations is monitored through insurer data reporting and annual reports. |
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What You'll Learn
Genetic testing and life insurance
Genetic testing can have an impact on life insurance policies and their pricing. While federal laws such as the Genetic Information Nondiscrimination Act (GINA) in the US protect individuals from genetic discrimination when it comes to health insurance, these privacy protections do not extend to life insurance. This means that, in certain countries, insurance underwriters can use the results of genetic testing when evaluating applications for life insurance, long-term care policies, or disability insurance.
In the US, life insurance companies may obtain and use genetic test results from the clinical records of applicants. They may also learn about an applicant's genetic information from their health history in clinical records and from the family health history supplied by the applicant. However, it is important to note that there have been no reports of American life insurance companies requiring genetic testing as a condition of applying for life insurance coverage.
In the UK, the government and the Association of British Insurers (ABI) have agreed to publish annual reports on the state of the insurance market, developments in genomic technologies, and compliance with the Code on Genetic Testing and Insurance. This Code states that insurers can ask for and use diagnostic test results, but not predictive and unknown test results, in their risk assessments. Predictive results supplied voluntarily by customers may be used to improve underwriting decisions, typically by lowering premiums or removing restrictions on cover.
Some argue that public policy should demand an end to the use of genetic test results in life insurance underwriting. This would encourage individuals at genetic risk to undergo genetic testing without worrying about the impact on their insurance. However, others argue that such a fundamental change in underwriting would negatively affect life insurance pricing and affordability.
It is worth noting that, in both the US and the UK, if you obtain genetic testing after you have an insurance policy, the results cannot affect your coverage. Additionally, some US states provide extra consumer protections related to genetic testing and long-term care insurance.
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Genetic testing and long-term care insurance
In the US, the Genetic Information Nondiscrimination Act (GINA) was passed in 2008, making it illegal for health insurance providers to use genetic information when deciding on 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 require higher premiums. However, GINA does not apply to long-term care insurance, and only some states have laws that cover these forms of insurance. In the absence of state laws, companies offering long-term care insurance have the right to request medical information, including genetic test results, when making decisions about coverage and rates.
When applying for long-term care insurance, insurers are permitted to review medical records and ask about health history, including family health history. This is part of the underwriting process to determine whether to offer a policy and at what price. If asked, individuals must disclose whether they have undergone genetic testing, even if it was performed through a direct-to-consumer site. However, if genetic testing is done after a policy has been issued, the results cannot affect the existing coverage.
While GINA provides protections for health insurance, it does not extend to other forms of insurance, such as long-term care insurance. This means that genetic test results could impact an individual's ability to obtain long-term care insurance or influence the cost of the policy. As a result, individuals considering genetic testing may want to carefully weigh the potential benefits against the possible impact on their future insurance options.
It is worth noting that the insurance industry recognizes the public's concerns regarding the use of genomic information. Efforts are being made to balance the use of genetic test results with fairness and transparency. Additionally, some states are contemplating legislation to restrict the use of genetic information by long-term care insurers. As the field of genomic medicine advances, further comprehensive action may be necessary to protect individuals from potential discrimination in insurance coverage.
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Genetic testing and disability insurance
In the United States, the Genetic Information Nondiscrimination Act (GINA) was passed in 2008 to protect individuals from discrimination based on their genetic information. This federal law prohibits health insurance providers from using genetic test results to determine a person's health insurance eligibility or coverage. This means that health insurance companies cannot deny coverage or charge higher premiums based on the results of direct-to-consumer genetic tests or any other genetic tests.
However, GINA does not apply to other forms of insurance, including disability insurance, long-term care insurance, and life insurance. In the context of disability insurance, individuals may be required to disclose medically relevant information, including the results of genetic testing, during the underwriting process. This information can influence the insurer's decision on whether to offer a policy and the associated rates.
The impact of genetic testing on disability insurance varies across different states. While some states have enacted laws to protect consumers regarding genetic testing and disability insurance, most states follow federal law, which does not explicitly prohibit the use of genetic information in disability insurance underwriting. This means that insurance companies offering disability insurance may request medical information, including genetic test results, when evaluating applications and setting rates.
It is worth noting that some insurers support the evolution of genomic medicine and technologies, recognizing the potential benefits for diagnosis and treatment improvements. They aim to balance the use of genetic test results with fair and transparent practices, ensuring that concerns about insurance do not hinder individuals from undergoing genetic testing. Additionally, predictive test results disclosed during the insurance application process are typically ignored by insurers and do not impact the offered premium.
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Genetic testing and health insurance
In the United States, the Genetic Information Nondiscrimination Act (GINA), passed in 2008, prohibits health insurance companies 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 or any other genetic test to deny coverage or charge higher premiums. However, GINA does not apply to smaller employers with fewer than 15 employees, and it also does not apply to other forms of insurance, such as disability insurance, long-term care insurance, or life insurance.
In the case of long-term care insurance, life insurance, or disability insurance, insurers can request and use diagnostic test results and may ask applicants about their genetic testing history. This information is used in the underwriting process to determine eligibility and pricing. Some states have laws that provide additional consumer protections in these cases, but most follow federal law. It is worth noting that if you obtain genetic testing after you already have an insurance policy, the results cannot affect your coverage.
In the United Kingdom, there is a Code on Genetic Testing and Insurance that is reviewed every three years. This code aims to address concerns about the use of genomic information by insurance companies and ensure fair and transparent use of genetic test results. Insurers can request and use diagnostic test results, but they do not request or use predictive or unknown test results in their risk assessments. Predictive results supplied voluntarily by customers may be used to improve underwriting decisions, potentially resulting in lower premiums or the removal of cover restrictions.
While genetic testing can impact certain types of insurance, it is important to note that health insurance plans often cover the costs of genetic testing when recommended by a doctor. However, different insurance providers have varying policies regarding which tests are covered, so individuals should contact their insurance company to understand their specific coverage.
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Genetic testing and insurance in the UK
The Association of British Insurers (ABI) and the UK government have agreed on a Code on Genetic Testing and Insurance, which was reviewed in 2022 and again in 2023. The Code outlines what insurance companies can and cannot request in terms of genetic test results when assessing insurance applications. It is reviewed every three years to ensure it remains relevant and fit for purpose, given the rapid advances in genomics and genetic testing.
The Code states that insurance companies cannot require or pressure applicants to undertake a predictive or diagnostic genetic test. Insurers can, however, request and use diagnostic test results that are reported to them. They will not request predictive test results and will not include these in their risk assessments. If an applicant voluntarily provides predictive test results, the insurer may use this information to improve the underwriting decision, potentially lowering premiums or removing restrictions on cover.
In the context of scientific research, any predictive genetic test results obtained do not need to be disclosed to insurers under any circumstances. If a relative is referred for predictive genetic testing as part of a research study, they will not be asked by insurers to disclose these results when applying for insurance. However, if a relative is referred for genetic testing outside of a research project, they may need to disclose the result when applying for insurance.
The Code also gives applicants the right to view their medical report before it is sent to the insurance company and to request amendments if it is factually incorrect or contains irrelevant information, including predictive genetic test results. Applicants can also choose to withhold the report from the insurer, but this may affect their application.
The ABI recognises that the public has concerns about the use of genomic information by insurance companies and is working with the government, patient groups, and health professionals to ensure a fair and transparent use of genetic test results in insurance.
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Frequently asked questions
Yes, genetic testing can impact your ability to get insurance. In the US, the Genetic Information Nondiscrimination Act (GINA) prevents health insurance providers from using genetic information to determine eligibility or coverage. However, GINA does not apply to disability, long-term care, or life insurance. Similarly, in the UK, the Association of British Insurers adopted a voluntary moratorium on the use of genetic test information.
No, health insurance companies cannot use the results of at-home genetic testing to deny coverage or charge higher premiums. This is true in the US and the UK.
Yes, you can be denied life insurance based on your genetic test results. Life insurance companies can use genetic test results to determine eligibility or coverage.
Yes, you can switch insurance companies if you find a less expensive policy. However, the new insurance company may have access to your genetic test results and may use them to determine your coverage and rates.
