How 23Andme Impacts Life Insurance Policies And Premiums

The use of 23andMe and other at-home genetic testing kits has raised concerns about the potential impact on life insurance policies and premiums. While federal laws like the Genetic Information Nondiscrimination Act (GINA) in the US and similar legislation in the UK protect genetic information from being used by health insurers, these laws do not extend to life insurance. This means that life insurance companies can request and use genetic information when making decisions about coverage and rates, unless prohibited by state or local laws. However, life insurance companies have stated that they do not consider at-home tests to be reliable and are more interested in doctor-ordered genetic tests. The impact of genetic testing on life insurance is a complex issue that involves privacy, ethics, and the interpretation of legal frameworks.

Federal laws and state laws

In 2008, the US federal government passed the Genetic Information Nondiscrimination Act (GINA), which protects Americans from genetic discrimination in health insurance and employment decisions. Under GINA, insurance companies and health plans are prohibited from:

• Using your predictive genetic information or genetic services before you enroll.
• "Requesting or requiring" that you or your family members take a genetic test.
• Restricting enrollment based on genetic information.
• Changing your premiums based on genetic information.

However, GINA does not extend to life insurance, long-term care insurance, or disability insurance providers. Federal law does not prohibit these insurers from using genetic test results when evaluating applications, setting premiums, or issuing policies.

At the state level, the protection of genetic information varies. While most states have their own statutes prohibiting or limiting genetic discrimination, the specific laws differ. For example, in California, individual and group insurers are prohibited from requiring an individual to provide genetic information, using genetic information to determine eligibility or risk status, and disclosing such information without consent. In contrast, other states may have less stringent protections, and some states may not have any specific laws addressing genetic discrimination.

According to Moody's, 17 states have laws that restrict life insurers from using genetic information in the underwriting process. Even in states without such laws, life insurers do not explicitly ask for genetic information. However, life insurers can still request genetic information and retract an individual's contract if they hide test results, which has led to debates over the interpretation and enforcement of state laws.

Privacy and discrimination

Privacy and data protection are paramount to 23andMe, which has committed to protecting its users' privacy since its inception. The company ensures that users' genetic data will not be shared with insurance companies without their explicit consent. 23andMe also supports legislative efforts to prevent genetic discrimination and protect individuals' genetic privacy. This includes the Genetic Information Nondiscrimination Act (GINA) enacted in 2008, which prevents genetic discrimination in the health insurance sector.

Despite these protections, concerns about the privacy and security of genetic data remain. There are limited federal protections for sensitive DNA information, and while some states, like California and Florida, grant consumers rights over their genetic information, the overall lack of comprehensive federal privacy laws leaves genetic data vulnerable.

The privacy of personal genetic information is always at some level of risk, and data breaches are a serious concern. 23andMe experienced a significant data breach in 2023, exposing the personal information of nearly half of its customers. While 23andMe requires a warrant before releasing information to law enforcement, other companies may not have such stringent policies.

Additionally, there is a potential for the private sector to use genetic information to discriminate. However, existing laws, like GINA, prevent genetic discrimination in health insurance and employment. In the case of life insurance, while there is no federal law limiting the use of genetic information, some states have enacted genetic privacy laws. For example, Florida prohibits life insurance companies from using genetic information to cancel, limit, or deny coverage or set different premium rates. Similarly, California's Genetic Information Privacy Act (GIPA) prohibits direct-to-consumer companies from disclosing genetic information to insurance companies.

While 23andMe prioritizes privacy and supports anti-discrimination legislation, the broader landscape of data privacy and genetic discrimination highlights the need for stronger federal protections to safeguard individuals' sensitive genetic data.

The Genetic Information Nondiscrimination Act (GINA)

GINA makes it illegal for employers to discriminate against employees or applicants based on their genetic information. This includes hiring, firing, pay, promotions, and other terms or conditions of employment. Additionally, GINA prohibits employers from intentionally requesting or obtaining genetic information from employees or applicants, with a few narrow exceptions. These exceptions include inadvertent acquisitions of genetic information, genetic information obtained as part of voluntary health or genetic services offered by the employer, and genetic information acquired through publicly available documents like newspapers.

While GINA provides important protections against genetic discrimination in health insurance and employment, it is important to note that it does not extend to life insurance, disability insurance, or long-term care insurance. In the context of life insurance, consumers who have access to genetic testing may have an advantage over insurers in the short term as they can learn about their genetic risks. However, life insurance companies argue that they rely on the honesty of applicants and full disclosure of all material information, and some state laws support their ability to use genetic information in the underwriting process.

Overall, while GINA provides a framework for protecting individuals from genetic discrimination in certain areas, there are still concerns about the potential influence of genetic information on the life insurance market and calls for more comprehensive regulations to address these issues.

Impact on insurance eligibility and coverage

In the United States, 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, disability insurance, or long-term care insurance. Therefore, life insurance companies are not legally prohibited from using genetic information when making decisions about eligibility or coverage.

Despite this, life insurance companies do not consider at-home DNA tests to be reliable, including ancestry tests. According to the American Council of Life Insurers (ACLI), life insurers are only interested in at-home genetic tests if the results include a recommendation to contact a doctor about a particular result. Even then, they would want the result confirmed through a doctor-ordered genetic test.

In some instances, genetic results can actually work in your favor when applying for life insurance. For example, if your mother had breast cancer before the age of 50, your "mortality risk" would typically be considered higher. However, if you took a genetic test and the markers for breast cancer were negative, your family history would be "forgiven," and your risk would be reassessed.

While life insurance companies can request genetic information, they cannot require you to take a genetic test. Only two states prohibit requiring an applicant to take a genetic test for life insurance. If you do not provide your genetic information, the life insurer may void your policy, as they consider full disclosure of all material information to be necessary for the validity of a policy.

It is important to note that state laws protecting genetic information vary. Currently, 17 states have laws that restrict life insurers from using genetic information in the underwriting process. In addition, some states have enacted genetic privacy laws that provide additional protections. For example, Florida prohibits life insurance companies from canceling, limiting, or denying coverage based on genetic information. California's Genetic Information Privacy Act (GIPA) prohibits direct-to-consumer companies from disclosing genetic information to any company responsible for administering life insurance.

In the United Kingdom, the Concordat and Moratorium on Genetics and Insurance is a voluntary agreement between the UK Government and the ABI (Association of British Insurers) that prevents insurance companies from accessing or using genetic test results in making coverage and rate decisions. This agreement covers predictive genetic tests ordered directly by consumers from commercial providers, such as 23andMe. Under this agreement, individuals are not required to reveal the results of any predictive genetic test unless it is first approved by the Genetics and Insurance Committee (GAIC). Currently, the GAIC has only approved the use of genetic tests for Huntington's disease by life insurance companies for policies worth more than £500,000.

The Concordat and Moratorium on Genetics and Insurance

• 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.

Frequently asked questions