Life Insurance: Genetic Testing And Discrimination

Genetic testing can affect your ability to get life insurance. While the Genetic Information Nondiscrimination Act (GINA) of 2008 protects Americans from discrimination based on their genetic information in health insurance and employment, it does not apply to life insurance. This means that life insurance companies can use genetic test results when deciding whether to offer coverage. However, some states in the US have laws that offer additional protections against genetic discrimination in life insurance. Outside the US, countries such as Canada, Australia, and South Korea have restricted the use of predictive genetic test results by life insurers.

The Genetic Information Nondiscrimination Act (GINA)

Definition of "Genetic Information"

Genetic information includes an individual's genetic tests and the genetic tests of their family members, as well as information about the manifestation of a disease or disorder in an individual's family members (family medical history). Family medical history is included in the definition as it is often used to determine an individual's risk of developing a disease, disorder, or condition in the future. Genetic information also covers an individual's request for or receipt of genetic services or participation in clinical research that includes genetic services by the individual or their family member. It also includes the genetic information of a fetus carried by an individual or a pregnant woman who is a family member, as well as the genetic information of any embryo legally held by an individual or family member using assisted reproductive technology.

Harassment and Retaliation

GINA prohibits harassment of an employee or applicant because of their genetic information. Harassment can include making offensive or derogatory remarks about an individual's genetic information or that of their relative. It also prohibits retaliation against an employee or applicant for filing a charge of discrimination, participating in a discrimination proceeding, or opposing discrimination.

Rules Against Acquiring Genetic Information

It is generally unlawful for a covered entity to obtain genetic information. However, there are a few narrow exceptions to this prohibition:

• Inadvertent acquisitions of genetic information, such as overhearing a conversation about a family member's illness, do not violate GINA.
• Genetic information may be obtained as part of voluntary health or genetic services, including wellness programs, offered by the employer if certain specific requirements are met.
• Family medical history may be acquired as part of the certification process for FMLA leave or similar state or local laws when an employee requests leave to care for a family member with a serious health condition.
• Genetic information may be acquired through commercially and publicly available documents, such as newspapers, as long as the employer is not actively searching for genetic information or accessing sources likely to contain such information.
• Genetic information may be acquired through a genetic monitoring program that monitors the biological effects of toxic substances in the workplace, either when required by law or under specific conditions when the program is voluntary.
• Acquisition of genetic information by employers conducting DNA testing for law enforcement purposes or human remains identification is permitted, but the information may only be used for quality control to detect sample contamination.

Confidentiality of Genetic Information

Covered entities must keep genetic information confidential and in a separate medical file. There are limited exceptions to this non-disclosure rule, such as disclosure to government officials investigating compliance with GINA or pursuant to a court order.

GINA's Impact on Life Insurance

While GINA provides protections against genetic discrimination in health insurance and employment, it does not directly apply to life insurance. There is no federal law that prohibits life insurance companies from using genetic information to determine the health rating of an applicant. However, some states have laws that address the use of genetic information in life insurance, and companies offering these policies must comply with such state regulations.

GINA's limitations

GINA, the Genetic Information Nondiscrimination Act, was signed into law in 2008 to protect Americans from genetic discrimination in health insurance and employment. While GINA is a landmark legislation, it has certain limitations.

Firstly, GINA's protections are limited to health insurance and do not extend to life insurance, disability insurance, or long-term care insurance. This means that individuals seeking these types of insurance may be discriminated against based on their genetic information. This is a significant limitation as it leaves individuals vulnerable to potential discrimination in crucial areas of their lives.

Secondly, GINA does not apply to small businesses or employers with fewer than 15 employees. This means that employees of smaller companies may not be protected from genetic discrimination by their employers.

Thirdly, GINA does not apply to individuals receiving their insurance through the federal government or the military. This is an important exception, as it excludes a significant portion of the population from the protections offered by GINA.

Additionally, GINA does not prohibit the use of genetic information in other areas such as housing, education, or access to other services. While GINA is a step in the right direction, it does not provide comprehensive protection against genetic discrimination.

Lastly, GINA's effectiveness is limited by the lack of awareness among the public and healthcare professionals. Many people are unaware of their rights under GINA, which can hinder its ability to protect individuals from discrimination.

While GINA has played a crucial role in establishing baseline protections against genetic discrimination, it is important to recognize its limitations and continue working towards more comprehensive protections.

State-level protections

While the Genetic Information Nondiscrimination Act (GINA) of 2008 protects Americans from genetic discrimination in health insurance and employment, it does not cover long-term care insurance, life insurance, or disability insurance. However, some states have laws that offer additional protections against genetic discrimination in these lines of insurance.

In the state of Florida, life insurance companies are banned from using genetic information, defined as the results of predictive genetic tests, in underwriting unless the information is accompanied by a diagnosis of a medical condition. This means that carriers of autosomal recessive or X-linked disorders are protected.

In Vermont, there is a ban on genetic testing as a condition of applying for any type of insurance, as well as the use of the results of genetic tests of family members. However, life insurance companies may still exclude from coverage or charge higher rates to individuals at genetically increased risks based on the results of genetic tests performed in the clinical setting and documented in an applicant's health record.

Some states have passed laws that go beyond the scope of GINA to prohibit genetic discrimination for "other insurances", including life insurance, disability insurance, and long-term care insurance. For example, in 2011, California passed the "California Genetic Information Nondiscrimination Act" (CalGINA), which extended protections to prohibit genetic discrimination in emergency medical services, housing, mortgage lending, education, and other state-funded programs.

Industry self-regulation

In the United Kingdom, the Association of British Insurers (ABI) initially adopted a voluntary moratorium on the use of genetic test information in 2001, which was later extended through at least 2019. This moratorium prohibits life insurers from requiring applicants to disclose the results of predictive genetic tests up to certain limits: life insurance of £500,000, critical illness insurance of £300,000, and income protection insurance of £30,000 per year. For policies exceeding these limits, insurers can collect and use genetic test results only if approved by the Genetics and Insurance Committee (GAIC), a government agency. So far, GAIC has only approved genetic testing for Huntington's disease for life insurance applications.

In Canada, the Canadian Health and Life Insurance Association adopted a code of conduct on genetic testing in 2017, stating that applicants need not disclose genetic test results when applying for new coverage worth up to C$250,000. This move was seen as an attempt to preempt federal legislation, but it was ultimately unsuccessful as new legislation, Law S-201, was approved in 2017, prohibiting the use of genetic information in any contract for goods and services, including insurance.

In the United States, there has been little meaningful legislation enacted to restrict the use of genetic information by life insurance companies due to inadequate public demand and entrenched industry opposition. However, some states have implemented their own regulations. For example, Vermont prohibits genetic testing as a condition of applying for any type of insurance and using the results of genetic tests of family members. Additionally, some states require insurers to obtain informed consent before performing genetic tests or prohibit the use of genetic information in underwriting unless there is a sound actuarial justification.

While industry self-regulation has provided some protection for consumers, there are concerns about the lack of standardized practices across different states and countries. The future of genetic testing and its impact on life insurance remains uncertain, but ongoing dialogue and collaboration between stakeholders are crucial to address privacy and discrimination concerns and develop ethical guidelines for the use of genetic information in the insurance industry.

International comparisons

Australia

In Australia, the use of genetic test results by life insurers is permitted under the Disability Discrimination Act 1992 (DDA) if supported by actuarial data or other relevant factors. However, the Federal Court of Australia has held that "other relevant factors" can only be relied upon to justify discrimination if actuarial or statistical data is not available. In July 2019, the life insurance industry introduced a partial, self-regulated moratorium restricting the use of genetic results in underwriting, applicable to policies up to certain limits (e.g., AUD$500,000 for death cover). Despite this, fears of genetic discrimination persist, and some Australians are deterred from undergoing genetic testing.

United States

In the United States, the Genetic Information Nondiscrimination Act (GINA) of 2008 prohibits discrimination based on genetic information in health insurance and employment. However, GINA does not cover other types of insurance, including life insurance, disability insurance, and long-term care insurance. As a result, life insurers in the US can use genetic test results when deciding whether to offer coverage and how much to charge. This has led to concerns about genetic discrimination, with some individuals choosing not to undergo genetic testing due to fears of insurance discrimination.

United Kingdom

In the United Kingdom, the Association of British Insurers (ABI) and the British government agreed on a Concordat and Moratorium on Genetics and Insurance, which restricts the ability of British insurers to request and use genetic information from insurance applicants. Under this agreement, insurers can only consider genetic test results that are approved by a committee for high-value insurance policies. The only genetic test that insurers can take into account is a predictive test for Huntington's Disease when applying for a life insurance policy of over £500,000.

Canada

In Canada, the Genetic Nondiscrimination Act (GNA) of 2017 makes it a criminal act to consider a person's genetic test results during contract formation, including insurance contracts. The GNA was passed unanimously in the House of Commons and with wide support in the Senate, despite strong opposition from the insurance industry. The GNA was challenged as unconstitutional but was upheld by the Canadian Supreme Court in 2020.

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